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.
It’s been quite some time for me posting something of a personal nature on here. Part of the reason has been that I’ve lost both my Grandmother and Mom within the past 6 months or so. Mom just passed right before the holidays.
It was not a shock. Your regular blog readers have known that she has been sick with Alzheimer’s for almost 25 years.
Society has taken a strange turn here in the US. Almost 30% of us are caring for a loved one while having a family of our own AND maintaining a full-time job. The numbers will only get worse as half of us will have to deal with caring for someone with a chronic illness in the next 30 years.
I found these numbers completely shocking when I was Googling anxiety and fibromyalgia for my own personal needs. You see, out of all the symptoms I have had over the course of the past several years, I’m finding panic attacks to be the worst. And I think it’s because those attacks remind me of what I have lost.
Both deaths were not shocking, but they still are very hard to deal with. I no longer have an ill person to care for and that’s an empty feeling. I think that is probably the hardest thing for me at this point, aside from not having both of them around to just talk to.
When they were both here and in need, I found a sense of purpose in preparing their meals, doing their laundry, and giving them the companionship they craved. I also had two children that needed me for help with homework, meals, and laundry and a husband who needed these things too. Life was beyond hectic and I would often find myself suffering from anxiety the most as my stress levels rose. It had gotten bad enough that I really didn’t want to leave the house in fear that it would surface and I’d be trapped.
Now that they are gone and there is less of a sense of urgency, I am having difficulty finding a sense of purpose. This usually can be easily remedied with me immersing myself in work, but I honestly have been finding it hard to write. I either lack the energy or nothing seems to sound right. I am even struggling with this blog post. I personally think it’s one of my worst entries, BUT I know there are probably a lot of people out there that may appreciate these raw feelings so I’m going to go with it– for better or worse.
I’m also finding it difficult to do housework. It seems like I get a panic attack at just the mere thought of doing it. I know some of it has to do with my OCD and the fact that I have a new puppy. She is difficult to potty train and that is REALLY not helping.
But hey– let’s bask in the cuteness of the puppy– shall we?
This is Luna. She is a Siberian Husky. We got the puppy for the hubs as a gift. He has always wanted a husky. She is quite a handful. She loves VERY long walks, likes to tug at the leash every chance she gets, is teething, and is BEYOND playful with my Sport.
Sport, my Cocker Spaniel is really liking Luna. They get along quite well.
The cat Onyx? Well, he’s not all that into Luna and would rather spend most of his time in the basement. But even he is starting to warm up to the sweetness! Okay, here’s some equal time with the cuteness factor. Here’s Sport waiting for Daddy to get home:
And here’s Onyx in all of his cuteness and being VERY bad. He’s not supposed to be on Daddy’s desk. LOL!:
These three, along with my daughters, nieces, and hubs have always been my inspiration to get out of bed in the morning, but after 10 years of dealing with this beast, you’d think I’d have a better handle on my symptoms where I wouldn’t get a panic attack at the drop of a hat. Sure I could say that my illness has just gotten worse, research would back me up. But I’m not so sure.
Truth be told, there is a reason why Fibro is called a beast. This thing can be hard to tame– even after having it for 10 years. Sometimes new symptoms creep up.
Or in my case– the symptoms are there because my body has not found a way to calm down after being put through a constant fight or flight scenario.
Yes, it is true that many Fibro sufferers CAN and DO suffer from PTSD (Post Traumatic Stress Disorder). BUT I do not feel that this is completely true in my case.
Alzheimer’s/ dementia care is a unique type of care. You are caring for an adult like you would a child, BUT you have to honor the adult with dignity. Watching someone lose their entire being is probably one of the worst things you can witness. There are others– but this one ranks high up there because you wind up feeling completely torn.
This person, when aware, must feel so trapped and you want nothing more than to try and comfort that feeling for them. It’s a battle you tend to face alone because the partner in this might not remember you or their disease 5 minutes from now. This is why stress can be at very high levels with Alzheimer’s. Cancer, heart disease, or any other illness that needs a caregiver is just as hard. I just can’t speak with as much experience, so I won’t try.
I believe that sometimes a caregiver continues to go through the fight or flight feelings after your loved one is gone because your body needs time to catch up and process what has happened. I’ve been caring for my Mom and grandparents for over 15 years and I think that does something to your psyche.
But even if you have been caring for someone for a lesser amount of time, I think your body has a problem processing that much stress without a release.
And when this happens, listen to your body. Relax by taking a nap, soak in the tub, meditate, play a mindless video game, read, write– whatever– but do something that YOU enjoy. Your body is longing for that release. Give into it so your body can heal and get one day closer to the normal you remember.
Supplements also help. I’m currently taking Ginko Biloba and Sam-e for anxiety, stress, and depression. I also take vitamin D and B to help with fatigue. And I also crave a glass of orange juice every morning. I stay clear of coffee and drink a good cup of tea.
Is it non-stop pain that lasts a lifetime? Or is it pain that comes and goes?
Do they include more than one pain/symptom?
The answer to all of these questions is YES and NO.
Fibromyalgia flare-ups are difficult to fully define because there are so many varying factors.
Although I began experiencing fibromyalgia symptoms as early as age 10, they didn’t start interrupting my life until my late 20’s. Because the symptoms were so vague and embarrassing, I didn’t see a doctor for them until my early 30’s. There wasn’t a lot of information available when I was diagnosed with fibro in 2003. Nor were there any approved medications, that would happen a few years later. In my 20 plus years of living with it, I have discovered four different ways fibro flares up in my body and how to deal with them.
Let’s take a look!
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Keep in mind that there are far more than four types of fibromyalgiaflares. When you consider how many fibro symptoms there are and all the different combinations that present at the same time, there could be thousands. The four that I have listed below are ones that I experience most often and that also at times, occur on their own.
Muscle flares This flare is best described as muscle soreness. They feel bruised, but there is no visible bruising. At times the pain is wide-spread and at others, it is isolated to one set or particular muscle. It can also present itself as muscleweaknesswith or without pain. When weakness is involved, limbs may feel like they weigh a thousand pounds and have the strength of a wet noodle!
Inflammation flare-ups Flares involving inflammation can occur anywhere throughout the body. Joints, muscles, tendons, organs, etc. Inflammation flare-ups are typically painful. Mobility may be compromised if experienced in the feet, knees, hips, and back. Inflammation in the hands may require the use of accessible toolsin the kitchen. Neck and skull inflammation may trigger bouts of fibro fog and migraines.
Neuropathic flares This type of fibro flare-up creates what I best describe as strange and sometimes horrifying sensations. Examples of these nerve sensations feel like crawling, burning, tingling, and/or numbness in arms and legs. One of the first neuropathic flare-ups I noticed was what felt like burnt patches on my arms, even though there was no visible sight of injury.
Fatigue flare-ups Fibro fatigue is no joke! Many, like myself, often confuse fatigue for tiredness. But unlike tiredness, fatigue isn’t fixed with a nap or proper amount of sleep. Fatigue overtakes your body and body. There may be paininvolved, but it can also be a pain-free experience.
What triggers a fibro flare-up varies as much as the symptoms. However, through journaling, it is possible to find what your most common fibromyalgia triggersare. Some possible fibro flare triggers include
The symptoms you experience will not only vary from others who have fibromyalgia, but they will often vary between flares. You may experience overlapping flares as I did for the first ten years after my diagnosis and wonder if it will ever end. Or you may only experience random flares with relief in between like I have for the past seven years.
The most common symptoms of fibromyalgia flare-ups include but are not limited to the following:
Fibromyalgia flare-ups have no specific timetable. They could pass within a few hours or last for days, weeks, months, and even years. However, with extensive journaling and tracking, it is possible to figure out what your most frequent triggers are. This knowledge can help you address the fibro pressure point that is typically set off before the trigger occurs.
For example, I know that any increase of 10-20 degrees within a day or two will trigger inflammation around my spine and neck. Knowing this, I run extra PEMF treatmentsto those areas to reduce the effect the trigger has on my pressure points. This decreases the amount of pain and symptoms that I would have experienced without treating prior and lessens the duration of the flare as well.
Having an effective fibromyalgia pain management planis imperative! I cannot express this enough. If you are unable to relieve pain or experience restorative sleepmost nights, the odds of shortening the length of a flare are very slim. This is exactly why I was in a continual state of flare for 13 years!
You might think that having a good pain reliever is all you need to survive a flare. While comforting, it is not enough. I had excellent prescription pain–relieversduring my first 13 years. They would block pain receptors and my pain level was lowered. The problem was that they didn’t address what was causing the pain. Another issue I had was while enjoying that relief, I turned into a manic Super Woman hell-bent to catch up on everything I couldn’t do because of pain. The result was an even higher pain level than what I had before treating my pain.
In addition to relieving pain, flare survival typically requires a combination of the following:
Nobody can predict how often a fibromyalgia flare-up will occur. My best advice is to get to know your body, track symptoms, flares, and what does and doesn’t help. This will at the very least decrease how often certain flares are triggered and shorten their duration. The most important thing you can do is to be patient with your body. It needs time to recover and stressing over the flare will only increase your recovery time. Fibromyalgia flare-ups have a mind and agenda of their own, fighting it only makes it worse. It’s better to adopt a comfort and care mindset.
Anyone who has suffered from an extended flare or has been hit with back to back flares knows how bad fibromyalgia flare stank can be!
Hygiene is rarely discussed in the fibromyalgia community. It’s personal and embarrassing. I mean seriously, how many people, besides myself, wake up and think that today is a good day to announce my stench on social media?
Personal hygiene is a major issue for the chronically ill and is something that needs to be discussed without shame or humiliation.
Fatigue and pain are the cause of fibromyalgia flare stank. It is not that we are lazy, but that we have little to no physical strength. Pain makes what movements we can make even harder. The result is going much longer than we should between showers/baths.
I was recently hit with an unexpected back-to-back fibromyalgia weather flare. The first flare was expected. I began feeling the effects of the incoming extreme heatwave days before it hit. As usual, I began feeling better after it reached its peak. But then something unexpected occurred. A daytime high reduction of 35 degrees (115 on Sunday to 81 on Tuesday) in 48 hours was more than my body could tolerate.
When I awoke Wednesday morning, my flare had subsided, but my stank was in overdrive! Because of the first flare, I had already pushed the boundaries of my shower schedule. And thanks to the second flare, my stench was so bad that I considered having my husband douse me in liquid soap and spraying me down with a garden hose!
Although it has been quite some time since I have experienced a fibro flare of this magnitude, I set out to prepare for the next. Whether you experience severe and debilitating flares periodically or on a regular basis, my fibro hygiene shopping list will be of use.
Don’t get caught off guard! Have your products on hand and stored bedside or accessed easily. A tiered vanity for your nightstand would be ideal if you suffer from frequent flares. A travel toiletry bag filled with your fibromyalgia flare stank fighting products kept in an easy-to-reach storage cabinet can be used if your flares occur less often. You might even want to consider a hanging travel case to hang from your headboard or wall to make reaching the items easier.
Discussing fibromyalgia and mobility problems is apparently taboo.
Only one of my physicians have addressed the subject of mobility and it was only because I brought it up.
Then there are the opinions of the general public, and unfortunately, some fellow fibro warriors, who make those who need to use a mobility aid out to be weak or say we have given up. However, as I have stated time and time again, there is nothing wrong with a fibromyalgia patient utilizing various types of mobility aids.
The sad and funny thing about it is that nobody questions my use of mobility aids when I state it is for arthritis. But their eyes roll if I mention fibromyalgia. The worst part is that we are the only ones who suffer when we refuse assistance.
But what about your thoughts or needs? We need to stop feeling that mobility issues are only important if they are permanent or acknowledged first by others. Acknowledging areas where we are struggling helps to identify what needs to be modified.
I was diagnosed with fibromyalgia in 2003. Since then, I have made many mistakes. And not just little ones! Refusing to accept my physical limitations has landed me in the hospital. It has stolen precious time that could have been spent with family.
The good news is that I have also learned from those mistakes.
Today I am going to load you up with information about how fibromyalgia affects mobility, empower you with tips for sharing your needs, and encourage you to let go of destructive misconceptions.
Fibromyalgia is more than physical pain and fatigue. Muscle pain and weakness can make it difficult to walk and stand. Fatigue and nerve pain may affect balance.
Fibromyalgia symptoms cause physical stress. Our bodies have to work harder to do what used to come easy.
One mistake I made early on was pushing my body to do what I wanted instead of following its lead. My body completely freaked out and began mimicking stroke symptoms. After a week in the hospital, tests revealed nothing, and the incident was diagnosed as a severe flare.
Another mistake I made was walking and standing longer than my body was able to just to give friends and family the impression that I was just like them. This caused my back and neck muscles to seize and freeze. Had I obeyed my body, I wouldn’t have had to spend six months on my back. Six months of should have been spent enjoying time with friends and family were spent on the couch with heavy-duty muscle relaxers and heat/ice, and massage therapy.
Frozen muscles, dizziness, fatigue, and widespread pain limit mobility. If you are unable to walk as far as you used to, experience additional pain after walking or standing for an average amount of time, or fall often, it is safe to assume that fibromyalgia has affected your mobility.
My fibromyalgia issues with balance have led to a broken tailbone, toe, and many bruised bones. Each injury increased my medical expenses and decreased my productivity.
Before we begin, I want to make it clear that you do NOT have to discuss our mobility issues with anyone. Your health, abilities, and disabilities are nobody’s business. With that said, you should always discuss them with your physician.
Never hesitate to discuss new or continuing mobility issues with your doctors. Doing so helps them understand how your chronic illness is affecting your body. It may also bring to light other health issues that may have been overshadowed by your fibromyalgia diagnosis. When talking with your physician, be sure to emphasize the impact your mobility issues are having on your life.
When it comes to friends and family, it is best to inform those you consider as part of your support team. This will help them know how to help you. To be honest, it is okay to share your frustration over what is happening with your body. Be real when discussing your mobility options.
As for the rest of the world, it is none of their business. With that said, should you use a mobility aid, be prepared to be asked. Because society makes people feel that mobility aids are only for those with an injury or disability that affects the legs, it is easy to feel like we need to defend ourselves. But you do not need to.
If you do choose to offer an explanation, keep your calm. Don’t tell people to f*c& off, talk in a relaxed manner. Give a simple explanation and move on.
Wheelchairs are the first thing people often think of when they hear the term mobility aid. But that is only one mobility option.
Options for balance issues include canes, walking sticks, and rollators. When my daughter was younger, her stroller served as my mobility aid. Pushing it helped with balance and the basket to put my bag’s intake pressure off of my shoulders and back. Dog strollers are another great tool.
One of my favorite mobility aids is my rollator/transport chair combo. It allows me to walk, provides a place to rest my feet and back, and gives my entire body a break when in transport chair mode. While my family feels it is not as easy to push as my manual wheelchair, we agree that when my need to be pushed is limited, it is the best tool to use.
Power chairs are a wonderful option for those who have had their mobility compromised yet want to remain independent.
The most important thing anyone with fibromyalgia can do to keep moving is to listen to their body. Pacing and not exceeding your body’s boundaries will allow you to do more regularly. Pushing hard and continually running yourself into the ground is guaranteed to decrease your productivity, plus time and ability to do the things you enjoy with the people you love.
***WARNING*** This installment is for readers 18 and over because it contains adult topics. Thank you for your understanding.
Though this article does not touch on fibromyalgia and love directly I think it is still a very important article to read because it discusses why we women sometimes are not open with our men when it comes to love .
Something I cannot stress enough, and I’ve stressed it in my books and articles on this subject religiously, is that you have to have open communication with your partner. Likes and dislikes can change over the years– or in a fibromite’s case– it can happen daily so never be afraid to speak up.
This OBGYN is spot on and she completely coincides with my views about men in relationships. Your man should be asking early and often in your Love relationship what you like. And yes, it’s even better if he asks you to show him. Men sometimes need– pardon the pun– hands-on experience to learn for next time.
Hey everyone! This is not going to be a normal post because I wanted to drop in and post an apology to Y’all! Last week I was involved with a Giving Thanks Romance promotion and some authors were really nice to let you all know about it via social media outlets. MANY of you have been following me on those sites for about a decade (Well… it’s going to be near two in a bit– but who’s counting 😉 LOL!) so I really want to make sure you see this apology. To make a long story short– I was GROSSLY misinformed by the coordinator how many books were involved and once I found out just how misleading the promotion had become, I pulled out my book. I am very sorry that I did that but I live by integrity as you die-hard fans of my writing know and I’d never, EVER want to mislead any reader. I am very grateful for all of the support, emails, PMs, likes, and shares by all of you! Having said that,
FF: Hi Ali! First off, welcome to Fibro and Fabulous! Please let the readers know a little bit about yourself and your company Norwex. AB: Hi everyone! My name is Alison Buonome but you can call me Ali. I live in Vernon, CT and I am a busy mom to 5-year-old twin boys. I have lots of messes to clean and love my Norwex products. I used to despise cleaning but Norwex makes it so easy and I don’t have to worry about my family being exposed to chemicals! Norwex’s mission statement is “Safe, Effective, Sustainable”. Yep, that’s it. Our commitment to a brighter future starts with our product mission. You shouldn’t have to sacrifice effectiveness or sustainability when you choose a safer product. So we won’t put the Norwex label on it unless it meets all three criteria. FF: What made you decide to get into the Norwex business? AB: As I said above, I am a mom to 5-year-old twins boys. My boys were born prematurely at 33 weeks. I would put my kids to bed, go straight to the bed.
Long before my official fibromyalgia diagnosis, I began experiencing unexplained leg muscle weakness. It’s hard to explain to someone who hasn’t experienced it themselves for many reasons. Sometimes it is painful and for others, it is not. There are levels of weakness ranging from making walking or standing difficult to impossible. It is unpredictable, unstoppable, and debilitating.
Having not heard of fibromyalgia until my diagnosis combined with it occurring randomly and infrequently, the idea that it was a symptom of any chronic illness never crossed my mind.
I look back now and wonder how the heck I thought it was normal. Then again, considering how busy, chaotic, and stressful life was during the episodes I remember occurring during my teens and twenties, it makes perfect sense why I would have never connected it to anything other than burnout.
I continued to struggle with how leg muscle weakness disrupted my life for a decade after receiving my fibromyalgia diagnosis. I was frustrated by not being able to prevent flare-ups and brokenhearted over the events I couldn’t attend because of them.
Finally fed up with missing out, I began searching for ways to continue living my life even when one or more parts of my body refused to cooperate. Keep reading to discover what I learned.
I am NOT a medical professional. Always consult with your doctor before making any changes to your health care plan.
The cause of weakness and pain differs between fibromyalgia patients. However, with most fibro patients there are mitochondrial1 changes (a change in the microcirculation and/or a change in muscle metabolism), that cause pain, fatigue, and muscle weakness by sensitizing muscle nociceptors.
The areas most affected are where the muscles attach to bones. While the pain and weakness feel like arthritis, fibromyalgia doesn’t damage joints or muscles2.
Related post – Is it Fibromyalgia or Something Else?
The pain and/or weakness may be widespread or felt in just one area. The severity of both can vary and are unpredictable. Your muscles may feel bruised, stiff, or lifeless.
In my own experience with leg muscle weakness, a flare could feel like my legs are heavy like I am walking in water or have sandbags tied to them. Sometimes they feel wobbly and wiggly, sort of like Jell-O. But the most common flare I experience is where they just feel lifeless. Sort of like being paralyzed without actually experiencing paralysis. They lack the strength to stand or walk for more than a few steps. Sometimes this form of flare is accompanied by widespread muscle fatigue that affects my entire body.
One thing that never varies is my inability to predict or feel a flare come on. They come out of the blue, without any warning, and are noticed upon waking up in the morning or after a heavy fatigue-driven nap.
I experienced more leg weakness flare-ups during the first decade after my diagnosis. I didn’t experience a decrease because I discovered a cure or used positive thinking to wish them away, because neither is possible. Instead, I got to know my body, began listening to it. and most importantly I learned to work with my fibromyalgia symptoms.
Whether you experience pain or not, muscle weakness in your legs may disrupt your daily life. It did mine!
Your doctor may prescribe medications like an anti-depressant (to block pain receptors) or muscle relaxers to help reduce muscle tension. They may also prescribe one of three fibromyalgia-approved medications.
I personally find relief each night before bed with a combination of cannabis and a magnesium-rich lotion. Running a few PEMF treatments at the base of my spine also helps reduce the pain I experience throughout my lower back and legs.
Quite often my fibro leg muscle weakness flares include my entire body, When this type of flare occurs, my only option is to rest. Days like this are spent in bed, lying on the sofa, or in my recliner.
These are the non-productive days that I have had to accept. I actually refer to them as my body’s recovery days. Because that is what feels like is happening. For what usually lasts for 24 hours, 48 at the most, my muscles feel like they are forcing me to rest to give them a chance to recover from the days, weeks, or months before.
One thing I truly believe led to the reduction of how often I experience extreme leg muscle weakness flares has been learning how to balance physical activity with my actual ability. By ability, I am referring to not pushing to or past the point of what keeps my pain level lower. This can be tricky and is something that I know I will never be able to do 100%. However, by staying within my body’s comfort bubble as much as possible, I can do more than when I was always pushing its limits.
Riding a roller coaster of super high and low muscle tension and pain levels is exhausting. It is not a sustainable way of living. But by attempting to flatten the track, at most I experience small hills and bumps. The result is taking longer to reach the point of exhaustion and less pain on a daily basis.
In between flares, I use a combination of muscle-strengthening exercises with resistance bands and aqua therapy. I miss walking in the pool and am impatiently waiting for my county to go up another tier on its phased reopening schedule so that my gym can reopen its indoor pool.
With my knee caps moving all over the place, walking on land for exercise is no longer an option, but I can tape my knees and get a great workout in water. Something I am looking into purchasing is a therapy pool for my home. I would love to hear from someone who has purchased one.
Massage is helpful when done regularly and not too intensely. I personally find that deep tissue massages often trigger a fibromyalgia muscle weakness flare. Whereas a regularly scheduled light massage relieves the tension without needing a day or two to recover. Talk to your doctor about what they think is best for you, give it try, and see if you experience the same results.
There are times when the lower half of my body feels weaker than the upper portion. When this occurs, I can usually use a mobility aid to help me keep up with any plans I have made. Which mobility aid I choose depends upon the level of weakness, whether I will have someone to assist me, and what a day out would demand my body to be capable of.
My rollator/transport chair combo is perfect when little walking is involved. A wheelchair is necessary and chosen when sitting up is my only option. This option also requires that I have someone to push the wheelchair. My final option is a power chair which will allow me to get around independently. I should have mine in a few weeks and am beyond excited to know that I will soon be able to do more with less pain.
Fibromyalgia leg muscle weakness doesn’t have to ruin your plans every time it flares. With alternative plans or modifications in place, there are many things that we can still do despite leg muscle weakness.
Learning how to live a life that doesn’t feel like a wild roller coaster may feel restricting at first. However, in time you will find that you will be capable of doing more than you were when you were going full speed ahead. Keep a journal of what you are able to accomplish and your pain levels. When you reach the point of your pain remaining at a low to moderate level, you should find the number of things you are able to accomplish growing.
What are your current leg muscle weakness coping skills and how are they working for you?
You’re not entirely wrong, but you’re definitely NOT right either.
It really drives me nuts the way doctors and the general population misunderstand fibromyalgia. Fibromyalgia literally means “muscle pain” in Latin. Of course, the muscle pain is real and it can hurt like hell, but it’s not a diagnosis. It’s like going to a doctor complaining that your head hurts, and having the doctor diagnose you with “a headache.”
You’re no closer to knowing the cause of your pain than when you walked in. Just as a headache can be due to any number of conditions, (head injury, sinus infection, dehydration, too little sleep, a stroke, a brain tumor, etc…) fibromyalgia is caused by a whole host of other conditions.
Doctors do a tremendous disservice to patients by throwing some Lyrica at them, telling them to exercise, and chalking it up to fibromyalgia. Fibromyalgia has become a catch-all for illnesses doctors don’t properly understand or are too lazy to test for.
It took me 10 years to find out my fibromyalgia was due to a connective tissue disease called Ehlers Danlos Syndrome. Meanwhile, my obsessive exercising to stop the pain of my fibromyalgia was just ripping my joints apart and forming scar tissue, because I actually had EDS and had no business running, jumping, and engaging in high-impact workouts.
I take the heat on here every time I write about fibromyalgia, but I’m sick and tired of doctors dismissing people in real, chronic pain with a fancy-sounding term that gets them no closer to discovering the root of their pain. Not determining the real root of their pain can put patients at risk for further damage, pain, and even death.
The causes of patients’ fibromyalgia are many and varied. What helps one patient may make another much worse. It’s dangerous to think every patient with fibromyalgia is the same.
But most importantly, of course, pain causes depression. I’ve had some really dark, despondent times when the pain is at its worst. Stop judging your friends!! Stop speculating on their mental health!! Just be a friend. Be supportive. Listen. Be present. Your friends have been through the wringer. It’s a horrific thing to have your life stolen by pain.
On a good day, my body aches as if I have the flu. That is my normal. That is how I have to go to work, take care of my family, keep my house in order and live life. On my worst days, I’m bedridden and unable to walk on my own.
Before getting an Ehlers Danlos diagnosis, I had been dismissed by several doctors as a fake or a pill seeker. I didn’t tolerate that from my doctors and I certainly won’t tolerate that attitude from my friends. Please, don’t pretend to be a doctor or a psychologist. Just be a friend. Pain can be lonely and isolating.
My 16 years of experience facing Fibromyalgia and 30 years of CFS
Pain medications taken too often can lead to a pain cycle, where every time you take an analgesic, the pain will come back sooner and stronger. Once you are there, you have to stop all painkillers completely. I just had my cycle restarted by a week in the hospital where they gave me Tylenol every 6 hours. That’s a whole bottle of Tylenol in a week, and it was completely unnecessary. Now I am suffering the consequences.
People with Fibromyalgia find relief with gentle exercise. If you have CFS with your Fibro, that’s a different story. But for “just” Fibro, go for low-impact activities. Swimming/aquafit is the best thing you can do for your body if you have any sort of joint, muscle, or soft tissue problems.
Fibromyalgia has a flare/remission pattern like many autoimmune diseases (although it is technically not one….yet), so when you are flared, do as little as possible. Don’t be afraid to ask people for help or even get community nurses to come to help you through the worst of it.
Other things that help:
Remove all toxic people from your life – also from social media
Reduce stress as much as humanly possible (I stopped watching the news long ago – especially political)
Don’t push yourself. If your body says it’s done, respect that and go lie down
You have a certain amount of energy each day. Plan accordingly by spreading your errands and chores out.
Don’t be afraid to nap. Our bodies heal when we sleep.
Get a TENS machine for those stubborn muscles in your shoulders. Just make sure to keep it on low, no matter how good it feels at the time. If you crank it up, your body will ding you for it the next day
Try not to rely on sugar or caffeine too much. These cause spikes and crashes in your energy levels, which actually reduce the amount of energy you can spend in a day. It’s hard though.
Do your research. Read scientific medical studies, research medications. Use logic. Avoid any website that uses the terms “leaky gut” or “homeopathic“, or claims to be able to cure Fibromyalgia. It is not cureable. It can, however, be sent into remission, where your symptoms will be minimal. This is done through stress and energy management.
Work with your doctor. There are many non-painkiller medications that can help, although most doctors wouldn’t think to use them for Fibro.
When I had a bad flare a year and a half ago, I asked my doctor about something to turn my immune system down, so I wouldn’t be so reactive (I have an undiagnosed autoimmune/autoinflammatory condition as well, which has caused a lot of allergies on top of the Fibro / CFS).
This question made her remember something from another patient. As a result, I got prescribed Doxepin, which suppresses the immune system and is also the strongest antihistamine known (bonus). I haven’t had a serious Fibro flare since I went on it. Everyone’s Fibro is different so this may or may not work for you. But it is always worth asking.
Someone suggested CoEnzyme Q10 which has helped a lot with my pain. It doesn’t help everyone. Other supplements are similar.
You need to find what works for you, but please do not take any supplements without speaking to your doctor first. They can screw you up as easily as they can help. Your doctor will probably want to monitor your bloodwork to make sure you don’t develop any imbalances due to supplements, and some of them may not be suitable for your particular form of Fibro.
