Meet Jessica Hooten, she is a fibromyalgia warrior who chooses to find the silver lining about her diagnosis. In this video, she tells us all about how she was diagnosed with fibromyalgia, treatments she has tried, and how she handles getting through each day. Secret: She does it by finding the humor in fibromyalgia.
Jessica, like many of us, has had sleep issues. She has been to a rheumatologist and a sleep doctor to try to ease her symptoms. Finding treatment and answers can be difficult and Jessica shares her journey with us.
“You don’t want to have something….but can they just find something, so we know what to do.”
Finding a good primary care doctor has been what helps Jessica. She is lucky to have a doctor that is trying to understand her condition.
Jessica works and tells us how hard it can be sometimes. Some days she struggles to get to work. Many of us can understand this feeling. How does she get through it? She just goes, because once she gets there she knows she will be ok. She is also fortunate to have understanding co-workers.
Fibromyalgia has become so normal for Jessica that she often forgets that things that are going on with her are because of fibromyalgia. She states it takes her longer to heal from surgery than someone that doesn’t have it. She gives a lot of advice on what helps her day-to-day pain (so make sure to watch the video).
They tell me it is not progressive, that it doesn’t get worse, but I feel like it has.”
How does Jessica stay positive? One way is that she and her husband joke about it with each other. She keeps in perspective that although she may be hurting, there are people worse off than her. She gives some advice:
“You have to just accept it.
“It’s going to be ok. You are going to have another good day…when it comes you will appreciate it.”
“Knowing what makes you feel better and doing those things.”
She has support around her and they keep it light-hearted and help her find the humor in the day-to-day struggles. She is thankful but also does get depressed. The challenge of keeping fibromyalgia in perspective is a day-to-day fight. A fight that she is willing to do with a smile on her face.
Meet Hilary Neumann! She has lived with Fibromyalgia and several other diagnoses for many years. In the video below she tells her story of how she handles living with fibromyalgia. Her strength and determination to live her best life has shown me how to power through when living with a fibromyalgia diagnosis. Listen to her story below:
Hilary has lived with fibromyalgia for twenty years and has tried many different treatments. Today, she is trying “outside the box” treatments like aqua-therapy and massage. However, these treatments are not covered under her insurance. It is important that fibromyalgia patients have treatments that are accessible, not just available. This is why it is so important that we continue to let our legislators know how fibromyalgia affects us daily.
Hilary’s story is one I’m sure many of you can relate to. She lived with fibromyalgia for twenty years without an actual diagnosis. She sought out treatments. Really, trying anything she could to take control over her symptoms. All the while, living her life and raising her kids. The strength I saw in her while telling her story was very inspiring.
“I’m suffering from a silent disease. I hurt every day. I hurt from head to toe. My brain fog is actually my brain hurting.”
Hilary’s husband is supportive of her illness and just like us is also frustrated by it. It is so important that we have people around us for support. It makes me so happy that Hilary has someone in her corner to help her power through with her fibromyalgia diagnosis.
“I don’t want to be treated differently. I just want you to understand. Don’t think that I’m lazy, that I can’t do it. I CAN when I feel good.”
Again, I want to thank Hilary for telling us her personal story. Also, for showing us that we can still live our best life, we just have to power through! If you would like to connect with Hilary you can do so through Facebook:
You never want to hear your doctor say, “your brain MRI came back abnormal.” The fear and panic that go through your body at this moment are overwhelming. My MRI revealed a pituitary adenoma. I know there are so many of you out there that have gone through this same situation and know just how I felt. For those that have never experienced this, I have written this article to spread awareness.
According to Cleveland Clinic “A pituitary adenoma is a growth or tumor on the pituitary. Most pituitary adenomas are slow-growing and benign.” Any adenoma bigger than 1 cm is called a macroadenoma. It is interesting that some adenomas can actually produce hormones, however, mine is not doing that. Mine was detected because the adenoma is pressing on my pituitary gland preventing it from producing the necessary hormones I need.
In researching adenomas, I found out they are more common than I thought. According to the Pacific Pituitary Disorders Center, 10-20% of the population has a pituitary adenoma and probably doesn’t even know it. I guess so many of these are so small they don’t cause symptoms. In addition, they are the third most common of all intracranial tumors. Luckily, 90% of these are benign and slow-growing, which is most likely what I have.
My journey to an adenoma diagnosis started with a visit to an endocrinologist. This doctor did the most blood work anyone has ever done on me. He tested my hormone levels and that is where he discovered that my estrogen and progesterone were very low. At first, this was a comfort to me because it explained so many of my symptoms and why I wasn’t getting any better. I was highly emotional, severely fatigued, had extreme brain fog and several other symptoms.
It can be tricky because many of these symptoms are also symptoms of fibromyalgia. This is why it is so important for doctors to not put all of our symptoms in one diagnosis box. Too often, they are chalking it all up to fibromyalgia. Although, these symptoms will still be present with the fibromyalgia they wouldn’t be to the extent I was experiencing them and for the amount of time. This makes me so mad, I can’t even explain how mad. We really need to overhaul the United States healthcare system and doctors need continuous education! I suffered for much longer than I needed to be suffering. Worse yet, my concern was disregarded by my doctors and I was made to feel like I was exaggerating my illness.
With the abnormal hormone levels, the doctor suggested we do an MRI. He told me that the best-case scenario is that I have a tumor pressing on my pituitary gland and if so it can easily be removed. Of course, this sent me into a mild panic. However, he reassures me that it is a simple procedure where they go up through the nostril, removes the tumor and that takes care of that.
Going into the MRI and waiting for the results, I really didn’t know what I wanted the outcome to be. I know that I was kind of scared, but also really relieved that there was something tangibly wrong with me. Anyone that has an invisible illness can understand this feeling. Seeing doctor after doctor look at you and treat you like you are faking it, can take its toll on a person. I’ve actually had a primary care doctor turn me away because my case is too complicated!
To address my hormone levels the doctor gave me estradiol and progesterone that I have to take in a complicated way. Well, it sounded complicated to me. I start the estradiol on day 1 of my cycle (the first day of my period), then I start the progesterone on day 15. I take both until the 25th day of my cycle, then start all over again on day 1 of my period.
At first, I was super intimidated by my new pill schedule since I have such a hard time remembering to take my pills. By the way, I’m on my second month now and I’m actually doing pretty well at remembering (pat me on the back). So the purpose of these pills is to replace the hormones that my pituitary gland is not producing. However, like all pills, they have side effects.
I have been experiencing migraine headaches on a regular basis and extreme menstrual cramping. I don’t know if there was a worse word than extreme- I would use it. That being said, my symptoms are improving. My extreme mood swings are getting better and I think I’m a little more pleasant to be around. The other symptoms are hard to tell because they blend in with my fibromyalgia symptoms. For instance, I am still fatigued and forget the words for everyday items I should know the word for.
It was a long week waiting for my MRI results with all kinds of scenarios running through my mind. What it’s like only a person with anxiety can come up with. So, it figures that I would get a severe cold with a fever and not be able to go to my doctor’s appointment for the results. I had to wait longer. I called the doctor the next Monday and we talked over the phone. The bad part of having this conversation on the phone is that your time is more limited and you don’t think to ask the questions you should ask.
My doctor told me that the MRI shows a 3-millimeter adenoma pressing on my pituitary gland. This is too small to operate on. Typically, an Endonasal Endoscopic Surgery is done. This is where they go in through the nostril to remove the tumor. This procedure is less invasive and has a high success rate. It figures that mine can’t be operated on. Not to mention, I forgot to ask how big it has to get to operate or how long it typically takes to grow as I should have. In the meantime, he raised the dosage on my medicine and told me we will watch it every 6 months.
I am stuck knowing there is something growing in my brain that should NOT be there. That sucks and is scary. I am also stuck with the side-effects of my new medicine that really, I have no choice but to take. Then there is my anxiety. I have to work hard at keeping it at bay. A person who has anxiety plays the “what if” game a lot in their head, so it takes conscious effort to not play that game.
The moral of this story is if your doctor isn’t looking for another answer and checking all the boxes, then find a doctor that will. If you know there is something else wrong with you, then don’t give up. I have no idea how long this thing has been growing in my brain, but I do know for the last year I have known deep down that something wasn’t right. If any of this makes you want to get involved, then I have the perfect organization for you. Support Fibro is an organization that is dedicated not only to awareness but education. This is so important because like I said above doctors are not educated enough on fibromyalgia! I have even had a rheumatologist tell me she shouldn’t even be treating this condition. Please click the link for Support Fibro and if you are able, make a donation or find a way you can support the cause because a Fibromyalgia Warrior you love needs answers.
This is a guest post from a fellow Fibromyalgia Warrior. Vicki tells us her journey with her mental health issues. In addition, we learn how hard it is to get diagnosed when you have fibromyalgia and then get appropriate treatment. Vicki tells us how the trauma in her life has exasperated her fibromyalgia and other ailments.
I was diagnosed almost a year and a half ago; after a year and a half of going to different doctors and saying, “I think I have fibromyalgia or Chronic Fatigue Syndrome, or both”. Most of them didn’t listen to me. My PCP didn’t diagnose either one.
It started with my legs swelling enormously after a plane trip to PA for camping. All through the trip, I was exhausted, working on schoolwork, and using a cane to get around. It’s not the first time the cane was needed.
I already saw a neurologist for migraines and sleep apnea—so I was already using a CPAP but still falling asleep during the day. I was already seeing a Psychiatrist and Psychologist. They both thought that my medication regimen was fine. They sent me to see a nephrologist for the swelling in my legs (fine), a cardiologist (fine), a colo-rectal specialist to make sure there was no bleeding (fine), my gym (fine), and finally PT for lymphedema treatments (didn’t help).
Ultimately, I ended up having to sit in a recliner with my legs elevated still higher on pillows, still in incredible pain all over, I couldn’t put my legs down (and still can’t for the day) or they would swell. Finally, I had to wear compression stockings as well, and I bought my own TENS unit for pain. I got a prescription for a cane and a walker and started the process for disability. I finally got in to see a rheumatologist—the first available appointment was in 4 months.
I was first diagnosed with depression and anxiety by my personal doctor (in a state I am not currently living in), in 2005, just after my mom died. I went to her because I was having difficulty coping with “work, school, and home”. She thought it was just short term and prescribed me some anti-anxiety med and something for depression.
When my (now) ex-husband found out about it, he threw the pills away and told me that I didn’t need them—that I just needed to straighten up my life. He was extremely abusive and suspicious of everything I did. So I started getting the medication filled at the hospital I worked at, and taking them at work (I kept them in my desk drawer). I would hide pills in my pocket to take on my way home from work in the morning. I couldn’t take them at home, because he would make me empty my pockets when I got home.
I started having trouble keeping a job. I went to work as a travel nurse initially, so I had time to look around at the hospitals in the area, find out who was hiring and what was available. The travel assignment was working well for me, so I signed up for a second assignment with the same place…that’s when they started breaking small parts of the contract. Since I worked night shift, there was no one to talk to when it happened. The hospital felt vindicated because staffing was low.
I was floated to areas where I had no experience and given patients I should not have been taking care of. My company didn’t really stand up for me, but they were understanding. They told me just to break the contract without any repercussions, but they didn’t have any other assignments in the area. I took an interim job in a nursing home to cover the next three months.
During that time, I was sick more often than not. My doctor said: “Your immune system is shot. You have been in fight or flight mode for too many years. Now your body doesn’t know how to behave.”, he had no other advice. I thought I’ll just have to live with it and get over it. He changed my psych meds and sent me for counseling which did help somewhat, but I never really connected with my counselor and I think it was too soon to talk about all the trauma I’d been through.
After being “unlawfully fired” from my next job, and collecting unemployment; I was also fired during my 90 day probationary period from the next job, while I was out under doctor’s orders. Since it was probation, they were allowed to fire me at will. At my next job, I was also frequently ill. I was working at a children’s hospital so I didn’t think too much about it.
That was the year I came down with H1N1 flu and almost ended up in the hospital with adult RSV (yeah, adults can get it), I had shingles (unusual at my age), found out I had thyroid disease (but not in-depth studies) and saw a cardiologist for the first time. You see, when I lived back on my own down in the other state, I respiratory arrested one night at work. My heart never stopped beating, but I stopped breathing—and came to in the ED with the code team working on me.
Everything was fine and nothing showed up. They observed me in the ED for the rest of the night and let me go home in the morning. When my current doctor heard about it he sent me to a cardio, and I went through all the testing and everything was fine. No one has ever found a reason for my sudden, almost dead.
The doctors decided that it must have been the start of my immune system rebelling. Even at the children’s hospital the Infectious disease specialist asked me if I had an immune deficiency and I told him not that I knew of. I had myself tested for HIV, and all the Hepatitis stuff just in case (due to my ex). Everything was clean. Of course, we were constantly changing my psych meds because it was very hard to control my anxiety and depression. I was diagnosed with PTSD in 2009.
In so many ways! The first time I saw the rheumatologist he said I had a severe case of fibromyalgia. Severe? Did I start with severe? All 18 markers were positive. Sadly, I was already walking with a cane most of the time. In addition, I had already stopped working. I couldn’t go back to work until I had my health under control—I would miss too many days and be fired.
I can’t even plan for part-time or PRN nursing because they count on you, and I really can’t be counted on for any particular day. Everything makes me tired. Walking the 10 steps from the chair to the bathroom is an effort that wears me out. I can’t sleep flat on my back anymore, I have to sleep in the recliner. I’m incontinent at night. My right leg and right arm (dominant side) seem weaker to me. And they both go weirdly numb at odd times of the day for no reason.
I can’t wear jewelry because it just hurts. I have to wear loose and soft clothing because clothes hurt my skin. Taking a shower is horrendously painful because it feels like needles are hitting my body—like when you have a sunburn. Now, I don’t drive because of the medication I’m on, so I’m dependent on my husband. I can’t stand in the shower, so I have to have a chair. I get short of breath and tired easily. Getting dressed can be horrible. If I am wearing pants—my husband has to pull them up for me, very often. I’ve gained weight.
I have a hard time concentrating on anything. I did finish my BSN and started my MSN—but it’s in teaching nursing; so, I can’t finish it. I can’t do the clinical portion. I’ve lost touch with friends. I’ve lost friends because I don’t have the same things to talk about. This makes me feel isolated and alone most of the time. I am angry that it has taken two years and two denials, and a hearing, and I still don’t have social security. They don’t see all of this as a disability. I am mostly afraid at how much worse this can get, and how it will change my husband and my lives. He is also disabled and considered unable to work per the VA.
I still haven’t pinned down what puts me into flares, although they have become less frequent with time. I know that I have more flares when I am overstressed. Right now I have stopped taking classes for my second BA, and am just trying to relax. Otherwise, I have no idea.
I was exercising sporadically prior to my diagnosis. I did yoga occasionally and walked occasionally. I always got in at least 10,000 steps at work at night. I’ve been encouraged to exercise, but I can’t walk. I got a stationary bike (because I’m unstable on my feet), and I sometimes go to a friend’s house to swim. I can’t do yoga anymore because I can’t get on the ground (because my right leg doesn’t work right).
Because of my PTSD, I am fearful of going alone places, I don’t like to be in crowds or with people I don’t know, I don’t answer the doorbell or when someone comes to the door (unless I know one of our friends is coming). I used to hide in a back room—but over the last 10 years that’s gotten better. I wouldn’t shower while my husband was away from home. I have to sleep in view the door no matter where we are and how many people are with us (camping). I still sleep poorly due to nightmares on a recurring basis about things that happened or could happen in this reality—and then sometimes dream him into parts of this reality he isn’t involved in.
When I was able to be very active (and when I was working—not that long ago) exercise did not help. Keeping myself from getting overtired DID though. A regular sleep schedule helped a lot. Meditation and breathing exercises to help with the anxiety helped as well. If things were particularly bad, I would do a reiki session on myself (I am a reiki master). I don’t know if diet helped—but moderating alcohol is always a good idea. Counseling helped once I found a female counselor who was able to work well with me.
When I am having a particularly bad flare, I find that my night-terrors and nightmares increase. My anxiety during the day does not seem to increase to me, but my current husband said it does (when I asked about this). When my depression is really bad, my pain is so much more noticeable. When one part of the system has a breakdown, the whole system has a breakdown. It is always true in life. When you have a cold—don’t you always feel awful all over, even if it’s only a head cold?
I currently take Lyrica for my Fibro, which is relatively new. It is helping tremendously. I had to fire my rheumatologist to get Lyrica—he wouldn’t give it to me. I take it twice each day. I also take Methotrexate once a week, and Plaquenil once each day. I also take Baclofen as needed three times a day in graduated doses for muscle spasms and stiffness. Pilocarpine for dry mouth and eyes three times a day and I use drops in my eyes. I use Cannabis for pain control (sparingly).
Previously, I was on Plaquenil twice a day, Gabapentin three times a day, Pilocarpine three times a day, Baclofen 20mg three times a day (not as needed), Tylenol with Codeine for pain every 6 hours, drops for my eyes, Meyers Solution infusions once per week. I found out that the Meyers Solution was just the vitamins I was already taking and stopped them because insurance wouldn’t pay for that (and it was over $100 each infusion).
I was started on Methotrexate pills once a week (what I’m on now). My “numbers” weren’t improving, so they switched me to injections weekly. I was still having pain so they changed my prescription to Imuran. I was on that for six weeks—in constant agony, the pain was worse, nausea uncontrolled, it precipitated migraines, and I literally could not eat. Now I do take a med (not for diet, but because I can never stay awake) that curbs my appetite. But while on Imuran, everything either tasted like it was rotted, or just the smell of it turned my stomach. Also, the swelling in my legs started again and got worse. I haven’t gotten it under control yet.
The current preparation of medications I take now, along with Cymbalta in the morning, helps more than anything. It’s not perfect—but I doubt that anything will be. I haven’t found out what precipitates my flares yet (I guess I haven’t been diagnosed that long?), besides stress. My immune system was already not great before I started taking drugs that can suppress immune responses (Methotrexate and Plaquenil); so that’s a concern. I currently don’t have a rheumatologist—but my primary care said that she’s never had a patient that was happy with one in the area. She’s also never had one that worked well with her on a holistic approach to the patient as far as care goes; so she usually is the one that has to monitor and change all her medications to fit his profile. My neurologist said the same thing.
Find doctors who COMMUNICATE with each other to treat the WHOLE person!!
I’ve been being treated for my mental illness for much longer than my fibro. However, when I received my diagnosis, the Psychiatrist I was seeing at the time changed my medication to Cymbalta at an equivalent dose to my previous medication. Cymbalta does have some pain control properties and is used for long-term pain patients. Recently, due to the problem with chronic fatigue, my anti-anxiety medication was changed to Valium because with long-term use it tends to cause less sleepiness or drowsiness than immediate (or as-needed) medication, or some of the newer meds for anxiety. A Psychiatrist I saw previously had recommended Welbutrin and Abilify for my depression. All of those together just made me into a functioning zombie.
I see a therapist for depression, take the Cymbalta and valium. That’s all now. My psych doc moved away and had a long discussion with my primary care. He said that she was fully competent to manage my meds unless I needed hospitalization again—In which case I would need to find another psych doc. We did try to keep me on the Welbutrin for a bit to see if it would help me quit smoking and overeating, but it didn’t—so we dropped it. It really wasn’t helping me so why take it?
I was hospitalized in early 2018 for depression. This happened when I went to the ED and voluntarily “Baker Acted” myself. I was also too ill to go to psych, so I had to be admitted to the hospital first (I had an abscess). Like so many of us with chronic illness with no cure; I just was feeling worthless and hopeless. We have financial difficulties. The house is a mess. Frustratingly, I can’t get up and cook dinner. I can’t exercise and I’m already overweight.
I was a productive member of society with a calling to heal and help people and it’s been taken away from me. My identity for my adult life had been wrapped up in my profession. Now…I felt like I had no identity. Sadly, I had lost most of my friends, or at least they were too busy except for the occasional e-mail, text, or short phone call. Then, I was bored with coloring pictures, drawing, reading, and playing video games. I mean really—what use is that to anyone. I couldn’t help myself, much less my husband. And he was taking on greater and greater responsibility caring for me; when he needed care himself.
Did I have a plan? Not really, but I didn’t really need one because I had a drawer filled with toxic pills, right next to the chair I spend every minute of my life in. I didn’t need a plan. I needed a reason not to have a plan. This time talking to the people who loved me and hoped they could talk me off the ledge wouldn’t do it. I knew I needed help, so I checked myself in. It was a big step to check myself into the hospital I used to work in. Scary. Even with privacy laws, in the workplace, things get around.
I spent a lot of time going to every therapy session they offered—even if it seemed silly. I spent a lot of time talking to the director of the therapy department and the social worker. What I needed wasn’t hope. I needed a plan to change my way of thinking about my life. I needed help to see that I could still be vital. I needed to see that I wasn’t a drain…and I needed hobbies that didn’t just use the time when I was awake, but challenged my mind and kept it going in vital directions. It was amazing. And the things I learned there are the things that I work on with my therapist still. They are the things that I try to work on still when I tend to fall into those dark thoughts.
I probably wouldn’t have been hospitalized for depression without the Fibro changing my life completely.
I have been almost constantly treated by a Psychiatrist since 2006, and a therapist that specialized in patients with PTSD on and off since then. I am currently seeing a therapist with the credentials of LMHC, LMSW, and a Masters’s degree in Clinical Psychology. (Licensed Mental Health Counselor, Licensed Master of Social Work). She does specialize in patients with PTSD. She does use CBT, and others I have been to have used it also.
At this point, we only use CBT therapy if I have recently had severe night terrors, nightmares, or flashbacks. If I have had anxiety attacks, we have to get to the root of the problem. Sometimes it does not involve my PTSD.
For me, at least initially, CBT was incredibly painful. That’s why I have seen therapists on and off. I was in an abusive relationship for what was about 20 years and almost didn’t live to tell about it. My most recent psychiatrist was very gentle with me about it. I expected that by this point, after over 10 years, I would have progressed beyond the point that I have. He sat me down and said, “you were basically a prisoner of war for 20 years. Don’t minimize your pain or symptoms by saying that soldiers have been through worse. I have read the transcripts from your protective order. I don’t know of anyone who has been through worse and lived. And you seldom complain. What is worse…you never talk about it.” I was ashamed that I had “let myself” get into that position. I blamed myself for my abuse. I blamed my abuser as well—but I had fallen into the trap that I should have left him earlier.
CBT makes you confront the worse memories of (for me) abuse, relive it, confront it, name it, see it for what it is, refuse to accept responsibility for it, take control of that memory and detach yourself from it. I couldn’t do it properly for the longest time, and I’m still working on it.
CBT does help. But it took me years before I was ready to relive those memories. The only thing I can say is; the timeline is different for everyone. Be honest with your therapist instead of just stopping therapy.
I think that everyone who has Fibro needs to be in the therapy of some kind, even if it is only speaking to a Pastor/Spiritual counselor if they have one. It can be so hard to deal with on your own. Our loved ones see it every day and live it with us. Other people with fibro go through it with us and support us. But it helps to have someone removed from our situation that we can talk to freely about how we feel; without feeling like we are burdening them. I know, for my part, that I don’t like to “complain” to my family and friends. As far as my fibro friends…we like to be positive and build each other up. But sometimes you just don’t feel that way. Without an outlet for the hard thoughts, and someone to talk them out with, the depression from just the pain and changes to our lives can spiral downward until it gets too bad to handle. There is no shame in therapy.
My mental illness began before Fibro entered my life. However, fibro has made it worse. It adds to my depression. Also, I have nothing to relate pain to except the days of my abuse. Pain is a trigger for me. In my sleep, if my pain becomes severe it will trigger night terrors or nightmares.
I’ve done extensive studies with my therapist and doctors. It has been shown that there is a possible link to people who have been through past trauma developing immune disorders later. Because I have PTSD, the immunologist was not surprised at all that I have fibro or other issues such as Hashimoto’s. Or that I have had shingles twice and that I get sick more often than most people. She put it this way: people who have been through past trauma are still fighting—even if they think they are not. In their mind, they still are. Their bodies are still producing, or have produced, a certain level of cortisol and reacting to the fight or flight response. The brain has no time to worry about “being healthy”, it is only worried about staying alive at the moment. The immune system can take over healing later. The problem is that the “later” never comes…and the body develops all sorts of immune problems. For some people it may be fibro, for some, it may be lupus where none was in their family before…or they may have a genetic predisposition that the trauma switched on. Trauma, even if it is dealt with very early in life, can work as a switch to turn on predispositions in genes.
Nothing in our bodies is separate. The body works together as a whole system. There is always a reason for the “why” even if we can’t find it. Research into fibro is really in its early stages….infancy really. And we don’t know as much about mental illness as we think we do. ECT therapy was all the rage in the 40s-50s. Then it was considered barbaric for so long. Now we’ve found out that it actually does help with depression, done with sedation (much more humane) and at much LOWER dosages, targeted only at certain spots. Treatments for mental illness change constantly and new medications are coming out all the time.
The study of the brain and how it works have been separated in medicine for a long time. Neuroscience vs Psychology vs Sociology vs Genetics. We’re just now starting to put bits and pieces together to integrate some of those sciences. And believe me when I say that some researchers and doctors are not as helpful or happy about it. It’s a touchy subject, really, in the scientific community, because some of those things—like psychology and sociology—were not considered Science (with a capitol S) for so long.
LOL, I have so many things wrong with me I could write a book! But since my abuse, I have developed Hashimoto’s Thyroiditis and Chronic Fatigue Syndrome, and an addiction to nicotine (that’s a story for another day though?). I would say that yes, the unstable thyroid levels and CFS contribute to my episodes—they certainly make flares harder to deal with. I won’t include my undiagnosed immune problem here because—well, it’s undiagnosed! It may be a genetic thing.
I’ve had several MRIs, mostly to follow the progression of changes due to migraine. Honestly, the test you would need to do here would be a PET scan. It would also need to be compared to a previous scan (which I don’t have). If a study was being done, you would need a sample of people who had both mental illness and fibro, a sample of people who had an only mental illness, and a control sample….and a large enough group of each. That way you could tell where the differences were. It would be an interesting study for a grad student thesis—or a doctoral thesis…But I’m not headed that way! If you know someone who is; I will volunteer for the study. I do have multiple plaques in my brain due to migraines. Not unexpected since I have had them since age 11 or so.
I am a nurse (retired), so I know a little bit about research and the sciences. Also, I am also a Reiki master, I’ve had acupuncture, I can help with answers about what I do for migraine relief, and I am currently studying herbal medicine (on my own). I do know a lot about drug-herbal interactions and what not to take with them. Please know that I am here for anyone who has suffered the trauma of domestic violence and needs someone to talk to. Or someone who is in that situation currently and needs someone SAFE to talk to. I’m not a counselor, the SAFE website, or affiliated with anything like that—so if someone needs my information privately (and I am very private) I am here to help in any way I can. I couldn’t get into a shelter when I left, and I was left with only the clothes on my back. Anyway…long story…maybe for another day…just know that I am here to help: for depression, for abuse, for fibro, for migraines, for anything. I was also adopted—so if there are adoptees out there wondering what the heck to do about finding out stuff; I’m your girl.
I graduated from Central Michigan University with a Bachelor of Science in Psychology in 2009. I went on to graduate from the University of Michigan in 2013 with a Master of Social Work degree. I became a School Social Worker for 3 years working mainly with students with emotional and behavioral disabilities. Throughout this process, I became diagnosed with several autoimmune diseases. This not only changed my life, but it also changed my perspective. I learned firsthand that there are few supports to help emotionally cope with this major life change. After 3 years of struggling I took my wellness into my own hands through research and finding ways to not only manage my disease outside of the doctor’s office, but to ultimately create a life for myself I could still be happy and fulfilled by. Having been successful in doing this and reflecting on my purpose, I made it my mission to help others experiencing the same difficulties.
In my practice, I provide a validating space for people with chronic illness to make sense of their experiences. I help them work toward effective disease management, process the difficult emotions that come up, and learn skills and tools to help them be successful living life with chronic illness.
I started my practice in 2017 – The idea came from my own personal struggle finding a therapist’s support when I was trying to navigate my first job after my diagnosis. I couldn’t find a therapist who I felt really understood what I was going through or that could offer me tangible skills or tools for managing my illness and figuring out how to integrate it into my life.
I work with a variety of modalities depending on what I feel would be most helpful for the client. I strongly believe in Cognitive Behavior Therapy, as it is heavily supported by research to be helpful for managing chronic illness and chronic pain. I also incorporate Mindfulness, Ecotherapy, encourage creative expression, Exposure Therapy where necessary (a type of CBT), Solutions Focused Therapy, and Narrative Therapy techniques.
We essentially create a plan of action to address the concerns that the client views as most distressing and work from there. Some major areas of interest are typically stress management, grief/loss specific to chronic pain/ illness, communication, problem-solving, relationships, and symptom management, or overall disease management.
Therapy can help through creating a plan unique to the person’s concerns (because these look different for everyone) as well as just having a supportive space to talk about and process everything that has happened, is happening, and will happen. They can build skills for symptom management, get resources and problem solve with a professional as things come up for them in real-time. Therapists can also help with pain management, relationship difficulties that arise inevitably from the added stress, and lifestyle changes required after diagnosis and put together a stress management plan to help reduce added distress. Seeing a therapist does NOT mean or support the belief that fibromyalgia is ‘all in your head’, in fact, it can be empowering and help you regain control over something that feels so uncontrollable at times.
In my area finding a therapist that takes new patients and my insurance is nearly impossible. In addition, finding one that also has experience helping people with a chronic illness like fibromyalgia is even more of a challenge. Therefore, can you recommend techniques that a person can use on their own?
This is a challenge regardless of specialty, mainly because therapy is undervalued and therapists are underpaid by insurance companies. This is a whole other issue, but it trickles down to the client. There ARE more and more therapists specializing in this area though, and I think they need is becoming more and more visible. Most therapists I know who specializes in this area, do so because they have a chronic illness themselves. We are very good at referring to each other around the country where we can because we understand the need for clients to feel supported by someone who understands this unique struggle.
I recommend searching Psychology Today in your area and looking under the therapist’s specialty areas to make sure they specialize in chronic illness. In regards to insurance, there is a great resource called Open Path Collective which is a national lifetime sliding scale program where you can find a therapist for the rate of 30-60$. You pay a one-time fee and belong to it for LIFE so if you ever move and have to switch therapists, you can jump right back on there and find someone who will honor the same fee.
First, ask yourself, ‘What do I want the focus of therapy to be for me?’ Usually, therapists offer a free 15-minute consultation via phone or video, which is a great way to get to know if they are a good fit. During the consultation, they may ask you what your top 3 concerns are, and these can become your goals to work on in therapy.
You can also ask if they have previous experience supporting clients living with a chronic illness, and what their approach for this population of clients typically is (if that is what you want the focus of your therapeutic work to be on).
Also be aware that for us, it is unethical to ask for or elicit testimonials or reviews from past clients, so if a therapist doesn’t have a lot of ‘reviews’ online, this is why. It is not necessarily a reflection of their ability or work.
Absolutely. One of the things I educate my clients about is the fact that Depression is the number 1 co-diagnosed condition with ANY chronic illness. I also let them know that both anxiety and depression can be a part of their symptom cycle and a result of the circumstance of living with a chronic illness. I also see a LOT of trauma related to medical experiences and stigma, which can result in PTSD or anxiety relating to medical situations or events and navigating society with a visible or invisible disability. This area doesn’t get a lot of mainstream attention, but it’s more common than you’d think in the chronic illness community.
I speak at local support groups for all sorts of chronic illness populations and am always happy to speak or present if I’m available. I’m located in the state of Florida and offer telehealth or virtual sessions, which is a great convenient for people whose conditions fluctuate unexpectedly. I also have an in-person office in St. Petersburg, FL, and am currently working on an online school filled with courses and tools for people with chronic illness to access anywhere, anytime. I take Medicare and private pay and offer superbills for people who have access to out-of-network reimbursement with their insurance. I also am an Open Path provider and offer a sliding scale to a limited number of clients as available.
Have you ever looked at a list of Fibromyalgia symptoms? Looking at these two websites you will see both anxiety and depression listed as symptoms. Here are two reputable websites as proof: Chronic Illness and Chronic Woman
In fact, it seems that fibromyalgia symptoms and mental health are very much linked together. One could say that fibromyalgia is like a spider web, with so many facets (co-morbid conditions) moving out from the center.
Part of Our mission is to ask questions about fibromyalgia symptoms and mental health. This series is to showcase the connection between fibromyalgia symptoms and mental health. Is mental illness, in part, a cause of fibromyalgia? I wonder.
In part 1 of Fibromyalgia & Mental Health, I told you my story read that here. Now, I would like to introduce you to Cathy. She is 20 years old and is fibromyalgia and mental health warrior. I think you will be able to relate to her story and find comfort in her advice.
I had been back and forth to my doctor’s practice with various different symptoms for many years prior to my diagnosis. As a young teenager, I never knew why I was struggling so much and why I had so many different health issues. High school education, college education, and my social life have been affected due to my health since I was 13 years old.
It was when my mum, who has Fibromyalgia, had mentioned to me that the problems I was having were similar to her symptoms. Then I started to think that the illness had been passed onto me.
The first time I spoke about FM at a doctor’s appointment, I was told ‘Oh no, you don’t want that. There was not much more was said about it. I had a blood test and the results came back ok. I was told that it would show up there if I had FM. (later on in life, I found out this was not true).
It took me around 5 years give or take, to be diagnosed. At this point I was telling people I already had FM because I knew as my health worsened, that is what I have.
So at the start of 2018, I made a doctor’s appointment again with my GP, solely to ask him to refer me to a rheumatologist. (As a friend with FM said that is who had diagnosed her). At the appointment, I had to keep reminding the doctor that I was there to be referred to see a rheumatologist and I felt I had to pretty much beg to him agreeing to refer me to see one. He wanted me to just go back on anti-depressants and go back to counseling’.
I kept telling him that I am struggling with the pain and had to be off sick from work and after so many years of struggling, I want to know if I do have FM, so I would like to see a rheumatologist.
He kept coming back to the ‘it’s all in your head’ comments and ‘why would you want to be diagnosed with something like that and I ended up being prescribed Fluoxetine in return for being able to see a Rheumatologist.
I never went back to see the same doctor as I didn’t feel comfortable talking to him again. After telling my mum she told me that she saw the same doctor about 30 years before and he was pretty much the same as her.
I got a letter in the post with my rheumatology appointment which was 5 months away.
The rheumatologist asked me questions about my symptoms and my history. He said that since my mum also has been diagnosed, it had been passed on to me.
After about 15 minutes, he did some physical examinations and turned to me and said ‘Well, you definitely have Fibromyalgia’.
He spoke to me about treatment and he told me that most medication will only reduce pain by about 50 percent if it does at all. I told him I understand that there is not a lot that can be done and he also told me that I do not need to take Fluoxetine anymore as I said it had only negatively impacted my mental health and not eased any other symptom. He assured me that if I don’t feel comfortable taking medication, I don’t have to.
The rheumatologist was very informative and understanding, even though I had come out of the hospital with a diagnosis of a horrible illness, I felt I finally understood why I was different and why I had been so ill for so long.
Most of my time at the doctor through age 14 until about 18 was due to my mental health. I wasn’t going into high school or barely leaving the house and saw multiple counselors who told me I had depression and social anxiety.
I was given antidepressants at a young age. They only ever gave me Fluoxetine tablets which made me feel numb and did not help with my symptoms. I didn’t feel I had any emotion, each time I took them and didn’t feel that specific medication benefitted me. For some reason, I was never offered anything different other than that same medication and to see a counselor. Even at times when I had said I want to try something different. It made me feel like I was just going down the same path, over and over.
The doctor who had referred me to the rheumatologist had also told me I could only be given SSRI antidepressants which I later also found out wasn’t true as I was given tricyclic ones.
At the age of 18, I had seen a counselor again but as I was now an adult, I could only have 6 sessions and that would be it for the time being. I spent most of my time explaining childhood trauma to her, how I had been abused, and constantly talking to her about how I am not being taken seriously about FM. We spoke about my mental health and my emotions. I told her that every time I tried to talk to somebody about suspecting I have Fibromyalgia, whether with a health professional or not, I was dismissed.
After the 6 sessions, she mentioned that my symptoms with my mental health sound like Borderline Personality Disorder and that she thinks I should push on being diagnosed for FM as she thinks it would help me feel better knowing.
I didn’t know much about BPD at this point, but when I researched the disorder, it felt like everything I had been battling mentally.
In addition, I was never able to have a career in the line of work I had studied for or wanted because it would hurt me and make me ill and flare–up. I have worked in many different types of jobs trying to find something to suit me and recently had to leave an office job due to not feeling well enough to continue.
Keeping active has always been important to me, even if it is just a little bit of exercise but when I flare up, it becomes a vicious cycle of struggling to move and even just leave the house and having to wait until I feel I am capable of trying again.
I felt better mentally after cutting the ties with people who didn’t support me
A real friend would not question if my illness existed.
Quality is better than quantity and if friends cannot support you no matter what then they aren’t really your friends.
I have personally come to the conclusion that this is just who I am and I try my best and do as much as I can and that is all that matters. Little positive thoughts like that can make a huge change.
Trying not to push me into doing too much is definitely something helpful when it comes to flare-ups. In the past, I have forced myself to go out and do things that fit people could do, because I felt pressured or I wanted to feel ‘normal’. That is definitely something that made me unwell and gave me flares. I have worked in jobs before where I have pushed my body and mental health to dangerous lengths instead of just giving myself the rest I needed.
It won’t get better instantly but pacing yourself and knowing when to stop or chill makes a massive difference.
I have struggled with my weight being up and down for years but I do notice that when I am at a healthy weight, I feel I can do more and it takes away a bit of that struggle.
Reducing stress and just taking the time to have a deep breath and release the tension can make me feel a little more positive even if just for a short time.
I try to exercise as much as I can and keep active when I am feeling comfortable and well enough to do so. Eating well can definitely change the way you feel mentally or physically but I understand that it can be a challenge and when I get stuck in a cycle of not exercising or eating well it is very hard for me to get out of it.
Most of the time if I am not eating well it is when I have a flare–up and can’t manage to feed myself a proper meal.
Constantly feeling exhausted mentally and not having any motivation can make even simple tasks seem so daunting.
Symptoms of BPD affect me also, like not reacting to most things in a manner that would seem ‘normal’ and feeling emotions so intense really messes me up sometimes.
There isn’t much I specifically do to help when I am feeling mentally unwell. I tend to take lots of rest though as if I am feeling mentally unwell, my FM symptoms tend to be heightened. I do notice that talking to somebody who has felt similar or somebody who will listen even if they don’t understand really helps me feel less isolated.
I do believe that if I am battling physical symptoms, my mental symptoms worsen and vice versa. If I have a meltdown and get stressed then the physical pain can get pretty bad. And causes an FM flare-up.
A lot of the time I feel as though I can be feeling low or anxious because of my fibromyalgia. Living every day with an illness can definitely affect you mentally. I have found that many people with FM may also be diagnosed with a form of mental illness also.
I have tried Amitryptline also for fibromyalgia. The tablets I have for sweating work very well but if they aren’t taken at the same time every day can upset my stomach. Other than that, they have worked amazingly and made me feel so much better about myself. I sometimes do worry about the side effects of medication though.
The meds I have had for fibromyalgia have only been started in the past 6 months and have been low doses. I am waiting for another appointment with my doctor to discuss other treatments as I don’t feel they have made much difference to me.
I have tried CBD oils and vaping CBD which had helped me a lot but unfortunately can be too expensive in the UK to rely on. Also, THC is currently illegal in the UK. So even though consuming cannabis has helped me more than I thought, It isn’t available as medication.
I was in the hospital a few times when I was younger. This was due to mental health and trying to take my own life. As it was years ago, I struggle to remember full details.
I think maybe speaking to a counseller again would benefit me as I like to talk about my issues to somebody but I am not sure how CBT is going to be for me.
I don’t feel as though I will find a method of coping with my health. At the moment, I feel I am just waiting for something to come along that will help me and in the meantime, I am just floating through life.
Mainly due to the fact that the majority of people I have spoken to with FM also struggle with their mental health. Anxiety and depression are a symptom of the illness.
Though I do also believe that my mental health would be better if I didn’t have FM and my physical health would be better if I didn’t have mental health problems.
They both affect my life but I feel coping with one illness would be easier if I didn’t have the other.
I think spreading awareness is a great tool also and social media gives you a platform to do that. You will meet some great people who you can talk to who are going through the same. They can give you tips and suggest things that helped them. Keep yourself open to new ideas.
Remind yourself that it is ok to rest!
Feel free to reach out to Cathy and leave a comment below to show your support.
In my article What You Need To Know About Endometriosis, I give you a background on endometriosis. This article is an interview with a Fibromyalgia Warrior, Jennifer. She answers questions so readers can see what it is like to live with Endometriosis and Fibromyalgia. She will also give you insight into her tips on how she manages her co-morbid conditions.
I was diagnosed with endo in October 2008, but it was not a surprise. My periods began when I was 11, and were extremely heavy and painful. I went on the birth control pill at age 11 due to their fierceness.
Endo: I had a partial hysterectomy in 2017 so I no longer have periods, but since I still have my ovaries, I can feel a very strong cycle and had to resume the birth control pill post-op.
Fibro: Aches and pains in the 18 fibro tender points, as well as referred pain. My wrists hurt when I drive my car a lot of days. I was having severe neck pain, which is gone for the moment (myofascial release/MFR, heat, a scarf, and CBD cream help greatly) and in place, I’m having knee, back, and hip pain. MRF helps those too, and I’m about to do another round of PT, which I respond well to. The stronger I am, the better I feel. Once upon a time, I could do a killer yoga headstand!
When my postpartum menstrual cycles returned, when my second/final child was nine months old, they were heavy and long. I tried many forms of birth control, with the hope of either calming or stopping them. After over a year of trying, my OBGYN suggested that I had adenomyosis, which is endo on the uterus. The only way to be 100% sure, and also to treat it, is to perform a partial hysterectomy. I went into my surgery feeling that it was the right decision either way. Adenomyosis was indeed found.
Terribly, unfortunately, my bladder was injured during my hysterectomy. I’d never been prone to UTIs but am now. I’ve had many UTIs and bladder issues since my surgery. Even without my period flowing, I’m prone to pelvic pain. A cystoscopy to check on my bladder about 8 months post-op sent my pelvic and referred pain soaring. Soon after the cystoscopy showed a “healthy” bladder, I was diagnosed with fibro.
My pain doctor says to think of my fibro onset as my nervous system malfunctioning due to all the trauma. Also, people who have had any and/or all of the following are more prone to fibro (plus I’ve always had a high fight or flight response, which I found helpful, until fibro…): TMJ (I used to wear a bite guard and still wake some mornings with headaches from teeth grinding); migraines (mine are mostly hormonal; I get them a few times a year, no aura};
IC {that diagnosis is a result of the injury to my bladder. I didn’t have IC symptoms before, and thankfully mine is currently regular}; endo (yes, and both sides of my family have or had heavy periods so I was likely to have them; I have two daughters and am armed with so many women’s health knowledge to help them if they need it}; IBS {mild]. So I have experienced, to varying degrees, all the maladies she listed…
-Sometimes OTC Prelief before coffee or a meal that might trigger me. Helps me a ton. I need coffee in the morning to combat my meds so I can drive my daughters to school.
I had anemia at the onset of my period and in my teens. Sometime in my 20s, my period lightened. I also dealt with anemia while trying to stop my period pre-hysterectomy. Taking iron helped though, a week of PMS and then a week of a heavy period, which was exhausting. In my 20s and 30s, I began only having a heavy cycle every other month. I generally found that the right birth control pill helped my symptoms.
Seek the right doctors; it’s OK to doctor shop! Do your research, but don’t just rely on “Doctor Google.” Find in-person and online support. Re fibro: there is always a new medicine, study, or supplement to consider, and another round of PT or a wellness group to do or join (I’m going to join a year-long wellness group in Feb/March through my pain doctor’s hospital that has PT, OT, an MSW, group meetings, and pain management). We are #fibrowarriors and there is hope.
Find an OBGYN you’re very comfortable with and who understands how difficult your periods are. Experiment until you’re on the right birth control if that’s the option you choose to help you. Being on it has never felt like a choice for me. Also, fertility issues are unfortunately so common, and there is no shame.
Grab a cup of coffee or tea and get ready because it is about to get REAL! I have my favorite coffee in my favorite cup and I’m ready to talk about Fibromyalgia and the effects it has on our relationships.
I don’t know how many times I have said to family members, “It’s not you, it’s me and I’m sorry for snapping.” This is especially true of my nine-year-old. I have tried explaining to him that I am sick and I’m in a lot of pain, but I’m not sure how much he really understands. Since he is the baby of the family, he has been spoiled (yes, I’m admitting it)! Needless to say, he is used to getting his way and when we try to lay down the law -he resists. It’s on my bad days that this resisting is not something I can handle or tolerate. These are the days I snap at him.
Maybe this is the part where you judge me, vocally or silently. Or maybe this is the part where you understand because the same thing happens in your house. Either way, I get it- I judge me too! I’m probably harder on myself than any other person could be (hence chronic illness brought on by stress). Before I was really “dealing” with my illness, I think I still snapped but didn’t really accept responsibility for my behavior. Now it’s different. I can (most of the time) recognize that I just said or did something that I wouldn’t normally, had I not been in so much pain or so exhausted. So, now I try to apologize. I don’t use my illness as an excuse though. This is why I say to my son, “It’s not you, It’s me”. I try to explain to him that his behavior needs to change but that was no excuse for me to (insert whatever I said or did).
This post is hard to write……although I am pretending you and I are friends just sitting at a coffee shop catching up. The truth is some of the people reading this I do not know at all. It is pretty scary to put yourself out there like that for all to see. I find it just as scary for the people I do know to read this because I haven’t told them any of this either. HOWEVER– as I said in my post Coming Out, I can’t hide from this anymore. This is just another way to remind me that what I am going through is REAL and not just going to go away. Fibromyalgia doesn’t give a F*** about my hopes, dreams, goals, or the people I love. It doesn’t care that I need to go to work, that I need to finish school, or that I had plans with someone special. When Fibromyalgia takes from you, it takes what it wants, when it wants.
This is why it is so important to manage stress and take time for yourself. I understand this now; even though it is still easier said than done. By letting everyone know what I’m going through, I’m no longer fighting this alone. I have learned so much from others already diagnosed. First, is that somedays you have to take it hour by hour or less if you need to. I learned that meditation can help center myself and keep my thoughts in check. Next, I learned that if I can stop living so much in the future I can manage my stress level better. Also, I have learned so much more than this, but most importantly – I learned that I am not the only one going through this. My invisible illness doesn’t have to be something I keep hidden.
I can’t really give any advice on the best way to deal with your personal relationships when you have Fibromyalgia. Why? Because I am still trying to figure it out. Really, I am pretty lucky! I have a supportive husband and family who understands my illness. That may not seem like much, but it really is everything. If they didn’t support me, I would be even more lost. So I acknowledge that daily and I am very appreciative for what I have, despite what the illness takes from me.
My last thought is that no one is perfect. You may snap at people and that isn’t ok no matter what you are going through. We have to take responsibility for our actions, even if our actions are driven by an illness that others can’t see. My goal is first to be upfront with what I am going through at the moment, especially with my husband. If he wants to have a stressful conversation, maybe it is something that can wait. Know your limits, meaning learn what pushes you over the edge so that you can stop the situation from getting that far. In my case, maybe I know I’m hurting, so I need to alter my day to only going to one store instead of the three I need to go to. I am hoping that by understanding my limits better, I can lessen the number of times I hurt my family’s feelings.
If we were friends at a coffee shop catching up, it would now be your turn to share. I would love to hear your thoughts and how you deal with relationships while in pain and exhausted. Please leave your story in the comments. Don’t forget to subscribe to my newsletter below so you can be the first to know when new content is published.
Fibro-Rash! Is this really a thing you ask? Yes, apparently it is a thing. If you have trouble with any kind of rash all over your body and you have Fibromyalgia, you could also have Fibro-Rash. I just visited my dermatologist because my rheumatologist wanted me to rule out psoriatic arthritis. I have had itchy skin for many years and just thought it was my dry skin. It turns out that it is really folliculitis, an inflammation of the hair follicles brought on by Fibro -and I do not have psoriasis-whew! My doctor said that there are ways to ease the symptoms but the only way to really control it, is to control the Fibro. Sure, no problem that is an easy fix….(she says sarcastically.)
I’ve always had sensitive skin, so it doesn’t surprise me that my Fibro symptoms come out through my skin as well. People with auto-immune illness and chronic diseases are more susceptible to folliculitis. So, it makes sense that I really started to notice something was wrong when my flare began. My chest broke out into a red, blotchy rash which waxed and waned with my stress level. It was like my body was doing whatever it could to get me to stop and notice. I was waking up scratching my legs at night – it was horrible!
How can fibromyalgia folliculitis be treated? Here is what my doctor said to do:
Cure Joy that I found with a simple google search. Please follow the link for complete directions. I have tried a couple of these, please leave your experience in the comments below.
2. More Ideas To Help You Control Your Itchy Fibromyalgia Rash
3. White Vinegar – one tablespoon to two cups of water, then apply to the affected area with pressure for twenty minutes.
5. Garlic– beneficial due to antibacterial properties
6. Aloe Vera-antibacterial and anti-inflammatory. This is the aloe vera that I use. I love it and it has tea tree oil in it already – I apply after a shower daily.
7. Since I first wrote this article a couple of years ago, I have learned a lot about Fibromyalgia. In the last year or so, I have really been focusing on controlling my symptoms with my diet. I go into a lot more detail (see link) about how an elimination dietcan help you improve your fibromyalgia symptoms.
8. If you want to try an intolerance test to get to what might be causing your rash faster I recommend 5 Strands Affordable Testing, use fibro cure 10 for 10% off. I used this service and hope to write an article on it soon. It really helps narrow down foods that may be bothering you.
Rashes can be scary, if you have one I recommend going to your doctor. I hope that my story has brought you some comfort and that if you do experience this, you now know that you are not alone. Not only are you not alone but there are steps you can take to relieve the misery. Subscribe to my newsletter and receive a FREE printable.
Most of you know that I have been taking care of my grandparents and mom because of their illnesses and elderly needs. What you may not know is that my grandmother has passed. She was 94.
This post will not be like my regular posts because I’m still dealing with a lot of stress so I will be streaming my emotions in this piece.
It has taken me some time to write about this because I’ve been an emotional mess, and unfortunately due to my OCD, I like to keep my mess nice and tidy– especially when it comes to death.
Death has always been a taboo subject with me. I had a friend in high school die while I was entering my Senior Year. And during that year I also had a Great Grandma and Grandma die, too. I became very humbled at that point in my life because I took the sympathy that people could offer me. Granted it wasn’t much because the grown-ups in my life thought I shouldn’t be hurt or upset since I was young– OR– they thought I should be strong for someone else because I was mature for my age. Needless to say, that part of my life was a mess.
Moving on a few years later, I lost one of the few people that understood me, my Uncle. It’s been 20 years since his death and people can say that the pain lessens over time, but I know for a fact that it really doesn’t. All that happens is that you find some normal times where you talk to that person you miss so much. But the pain— it’s always there– and full-on when you least expect it.
Maybe some people say that the pain lessens because they are used to crying. I can say I’m SO not used to that. I don’t do that because I have kids and they shouldn’t see me that way. They don’t get to see me hurt because I’m Wonder Woman in their eyes. So I can’t cry. My Father was a similar man, but was, and always will be, my Super Man.
The only times I ever saw my father shed tears were for joyous occasions, and I tend to do the same– unless a sappy Disney movie gets to me. 😉 BOTH my Father and I share that trait to a degree– never saw him cry at a movie– probably wouldn’t want to either since he’s my Superman.
Tonight, though, I’m sad for a different reason. I’m crying, but no one is around so it’s acceptable. I am mourning for the old times. The times when everything was great and joyous. The times where this room that I’m am typing away in was filled with laughter and food.
It’s now a study. I made it that way to change things up. I NEED it that way right now because things are still too raw.
But getting back to what happened today– I just removed what I hope is the last horrible reminder of Alzheimer’s and old age in the house. I went to check on my youngest and wanted to shut her door so the cat and dog wouldn’t go into her room.
She’s not allergic, but my husband and I are, and we are trying to teach the animals not to be with us at night. ANYWAY, as I was shutting the door, I noticed the latch Grandma put on it to keep the room shut off from Grandpa.
She stuck it there so Grandpa wouldn’t go in there and hide the bank statements/banking accounts on her because she needed to pay the bills. Grandpa was pretty far gone with Alzheimer’s when she had to do it and I should have noticed it when we took my Uncle John’s name off of the door a few days ago, but I didn’t because I was blind to it then.
It’s now off, along with Uncle John’s name on the door, and I feel a little better. Not MUCH because I STILL feel like I’m in HER house and not mine, but hopefully all of that will change as time goes on.
