Our doctors spend a lot of time asking us questions like ‘what are your symptoms?’ and ‘how’s your sleep?’ So why is it that no one seems to ask us how fibromyalgia is affecting our relationships? Our spouses, our children, our friends and our colleagues – all of them are affected when it comes to fibromyalgia, but to what extent?
The National Fibromyalgia & Chronic Pain Association recently posted a survey asking about fibromyalgia symptoms and the impact that fibromyalgia had on relationships with partners/spouses, children, and friends. The survey was completed by over 6000 people with fibromyalgia, making it one of the largest fibromyalgia surveys. The results were published in the medical journal Musculoskeletal Care.
Out of those who participated, 96% were women and most were between 45 and 64 years old. The results were as follows:
Over one in four people reported that their spouse/partner did not understand their fibromyalgia, and half of people said fibromyalgia had damaged a current or previous relationship with a spouse or partner. 10% said fibromyalgia contributed to a break-up of a relationship.
Over 70% of people surveyed said they had children who were old enough to understand their FM. One in three said their children resented when they couldn’t participate in activities with them, and one in four said their children thought they exaggerated their pain.
In general, those surveyed explained that fibromyalgia had less of a negative impact on friendships than with spouses/ partners or children. That being said, many people felt that having fibromyalgia resulted in eventually losing friends, as many stopped calling or extending invitations.
Here at The Chronicillness.co team, we don’t want your relationships to suffer on account of your fibromyalgia. We are constantly taking new research and information into consideration when finding the correct treatment path for our patients, and strongly believe a multidisciplinary approach to treatment can help manage symptoms for a better quality of life.
Question: I have had fibromyalgia for some years. I would like to address the illness and get some help in managing pain levels better, any advice?
There are many steps you can take when it comes to managing your fibromyalgia. To start, choose activity wisely. Exercise regularly, but do not overdo things. Set personal limits, and always remember to take a rest. Try your best to remove yourself from situations that are likely to cause stress as this can aggravate pain, and modify your working environment to better suit your situation. During a flare-up, do less, take warm baths or use ice — whichever works best for you. It is also a good idea to read up on some simple mindfulness techniques such as meditation, deep breathing, or visualisation — as many patients see relief from these practices.
With several years of experience treating patients with Fibromyalgia, The Chronicillness.co team truly empathise with the obstacles patients face on a daily basis. We are constantly taking new research and information into consideration when finding the correct treatment path for our patients. We believe in a multidisciplinary approach comprised of tried and tested measures to effectively lower and manage symptoms for a better quality of life.
What are trigger point injections, and how are they most effective (i.e. all over the body pain or more targeted trigger points?)
There are a number of different types of trigger point injections including dry needling (acupuncture), and wet needling (with local anaesthetic/ local anaesthetic plus steroid or botox).
Trigger point injections are thought to work by causing local relaxation of muscle fibres, leading to a reduction in tension and a reduction of afferent pain traffic back to the spinal cord. They also release endorphins in a number of patients, which gives an overall analgesic effect. They are most useful when there are specific targeted trigger points, rather than when patients have widespread all over body trigger points. The aim is to shrink down the area of trigger points to the smallest area, before using trigger point treatment.
If someone has all over body pain, can treating the worst affected area with trigger point injections help the other areas?
Yes, in some cases this can be effective, although this is always on a case by case basis for which patients need to be fully, medically assessed. Various treatment options must be reviewed and discussed in person with the patient, so they can make an informed decision as to the best course of treatment.
With several years of experience treating patients with Fibromyalgia, The Chronicillness.co team urges patients to consider trigger point injections as a highly effective treatment options with little to no side effects.
What are the main benefits of TPI’s and can successful TPI’s result in lower requirements for oral drugs?
The main benefits of trigger point injections include reduction in pain, spasms, and analgesic requirements, in addition to improvement in overall functions. If and when trigger point injections (either dry or wet needling) is effective, this can indeed lead to a lowering of oral, analgesic medications.
The New Year is off to a great start already, as fibromyalgia sufferers in the U.S. have finally been acknowledged. As 2015 came to a close, fibromyalgia received its own official diagnostic code in the ICD-10-CM codes in the U.S. ICD-10-CM stands for International Classification of Diseases, 10th Revision, Clinical Modification. This is a list of diagnostic codes used for medical reporting in the U.S.
The ICD-10-CM is based on the ICD-10, the statistical classification of disease published by the World Health Organization. ICD codes are used by everyone in the healthcare industry, such as doctors, insurance companies and government agencies. They are used to identify and classify diagnosed diseases and conditions.
Prior to the official code, when diagnosing a patient with fibromyalgia, doctors had to use a general code, which could include any muscle pain or inflammation. However, now FM is recognized as a distinct entity with its own code—a meaningful and exciting change for all who suffer.
The fact that fibromyalgia has its own diagnostic code now makes it impossible for anyone to insist that fibromyalgia isn’t real. Both the World Health Organization as well as the U.S. Government have given it unquestionable legitimacy.
Additionally, a distinct diagnostic code will improve consistency in fibromyalgia research, as the data for many observational studies is gathered by tracking diagnosis codes. Without its own diagnosis code, fibromyalgia studies have sometimes been hindered by inaccurate data from the inclusion of patients that did not actually have FM.
Fibromyalgia syndrome causes widespread pain and stiffness in the body which gets worse as the day progresses, leaving you feeling weak. This syndrome can have a huge impact on how you lead your life on a day-to-day basis. A range of treatments are usually prescribed for long term management of fibromyalgia pain including physical therapy, psychological therapy and drugs. Below are some useful coping techniques to help you manage the pain on a day-to-day basis.
That clear liquid we take for granted every day can actually help to relieve the symptoms of fibromyalgia. Did you know that fatigue and headaches can be caused by dehydration? Our adult bodies are made up of approximately 70% water which evaporates through breathing, sweating and other natural bodily functions. Drinking water helps to flush all the toxins through your liver and kidneys and out of the body. Aim for at least 8 glasses each day – being hydrated will help to fight off fatigue. If you don’t like plain water try a squeeze of lemon juice or lime to add some flavor.
Fibromyalgia sufferers tend to have disturbed sleep – research has shown that sleep deprivation can cause widespread pain and chronic daytime fatigue. The key to reducing fatigue is quality sleep. Unfortunately, it’s a double edged sword as the pain makes it harder to sleep but sleep helps to relieve the pain.
You can encourage a better night’s sleep by setting a regular time for both going to bed and getting up each day. Make your bedroom a cool, dark, distraction free space and avoid drinking caffeinated drinks in the evening. If you feel the need to use a computer before bed you should try and restrict it to at leapt an hour before you go to sleep. If you find your thoughts are what keep you awake you can try keeping a notepad beside the bed and write down the thoughts you have and listen to relaxing music to unwind your mind. This is an effective technique for reducing anxiety.
A study in Rheumatology International (2008) confirmed hydrotherapy as a method of relieving the painful symptoms of fibromyalgia. Warm water helps to circulate the blood, reduces the pressure placed on joints and helps to relax the muscles (and the mind). Whilst a hydrotherapy pool isn’t a luxury available to everyone on a daily basis, instead you could have a long, warm bath in the evening to help soothe your muscles.
We’re not suggesting that you go and sign up to a 5k race, but research has shown that gentle exercise plays an important role in helping to break the pain cycle, reduce stiffness and improve the symptoms of fibromyalgia. If the pain is bad, it may not be possible to exercise much but starting slowly with a few easy stretches, then working your way up to doing more is a good way to ease into it. Gentle exercise like yoga, walking or swimming will all increase your heart rate. Start out slowly and for short periods of time, then as you are able, work up to 30 minutes a day if you can.
I am a retired Author and Producer of large creative events and most recently a Paper Maker, Sculptor and Workshop Leader. My husband always said that I metamorphosis at various times throughout life. We married very young and have three children and four grandchildren.
I was first diagnosed about six years ago. Gradually as my Fibromyalgia symptoms became worse I have had to learn to give myself permission to simply play with materials in the studio and not feel I have had to achieve anything which I have found extremely difficult and I have been very grateful for friends who have encouraged me through playing with me so that occasionally I can make again. Even if I don’t feel like it, I do recognize that creativity is one of the key healing elements in making one feel more uplifted and human.
I’ve been going to start this article many times but each time I was about to commence the dominant worst characteristics of my Fibromyalgia change, flawing me and causing me to stop and draw upon inner strength to refocus and start writing yet again!
I have not tried to use medical language but leave that for the experts! Also, I’m never very sure on some aspects whether the medication that is helping some of the more serious symptoms are helpful with others but again rely on expert advice.
Of course, all the other symptoms just keep perpetuating and even multiplying at times over the years and sometimes to me even seemingly replicating other diseases but I will come back to these. Upon reflection over the years I consider the worse aspect living with Fibromyalgia is the aloneness. Nobody actually sits down with you and says “now tells me what is it like living with Fibromyalgia?” Nobody. People will say how are you today? But that is embarrassing. Do you really want to be known as someone who complains all the time? No! So, to inform a little you just mention localized pain and weakness sometimes.
When you have a medical appointment, you pick out the worst aspects at that moment of time and it is those that get treated but I am fortunate and have an excellent medical team who’ve heard them all before and so have an overall picture.
Each day is a challenge and current severe pain areas are in my arms, shoulders, neck and in mostly in the top and back of my head. I also have ongoing very bad pain in my back and hips which is brought on by standing mostly at the kitchen sink after a few seconds, walking or any movement in fact. Pain is extremely unpleasant and can cause a lack of functioning but it is not something I am frightened of and do not therefore retire to my bed. I do get up in the mornings as I believe in moving very strongly and rest between moving. This has been a problem in the past with other extreme health conditions so I try to gage the level sensibly! At the moment I am not getting the pain in my legs and feet and toes only normal muscular after exercising. Neither in my hands and fingers. My toes have pins and needles. The shooting pains particularly in my breasts and stomach are also not occurring.
Starting at the top of my body sleep has been a very difficult issue and until recently due to medication I’ve only been able to sleep on average about 4 hours a night, now I sleep a little longer. I haven’t been able to cope with the computer for longer than 20 minutes at the most without feeling stressed or having a brain fog. Neither can I cope with flashing lights, bright light or loud noises and can feel dizzy easily. Memory loss is embarrassing to say the least.
I have awful indigestion although I eat little and very slowly and I frequently feel sick. This seems to be felt through heartburn or coughing. I am breathless very easily. I have gradually lost my enjoyment of food. I feel as if I have a urine infection most of the time which again interrupts the night as I get up between 5 to 7 times a night and can’t go out without stopping frequently. My vagina is so sore and painful and sexual intercourse has been out of the question over the last few years.
My body temperature fluctuates excessively at times and for the first few years I felt hot all the time which was unusual, then this changed (which may have been due to medication I don’t know) to frequent hot flushes even if I want to go to the toilet and always at night time so feeling very menopausal. I have never been a sweaty person but during these very warm times I do sweat and it is quite sticky unlike usual sweat. It can feel as if sweat is trickling down my legs. I can go from very cold to very hot within seconds. Patches of my skin can sometimes feel as if they are burning.
I experience extreme itching all over my body at times and this can for me exceed the pain as it is so tormenting. Other times it just on my head, back areas and leg areas. Also. It can feel quite separately that there are insects crawling under my skin often in my legs. Another sensation is that I have experienced in the past is similar to shingles with similar stripes appearing that can be painful and itchy on my back and under my breasts for a few days.
I also woke up one day with a red rash on one eye which looked as if I’d been punched in the eye preceding a black eye and was told by a friend who is a medical officer to go straight to A&E where they had an Eye Hospital as my sight kept coming and going. They didn’t know what it was but said I should contact them day or night if necessary. It took nearly a week to completely disappear. My eyesight does occasionally waver and my eyes feel dry and itchy all the time.
I also bruise very easily sometimes as red dots which turn blue and other times as a bruise that spreads.
Normal tasks like cleaning one’s teeth proves very painful whatever I try to alleviate backpain and having a bath is no longer a pleasurable experience so I always shower. This again means inwardly priming oneself up because of the effort taken particularly if I wash my hair. Do I try to keep my arms up in the air or do balance them against my body and bend right over which is going to prove the easiest on that particular day? Of course, not all days are this bad.
The frustration of being so weak was where I started and it was some time before diagnoses when I complained about pain too. One still hopes to grow stronger through exercise and it is wonderful to no longer be in a wheelchair thanks to meeting Dr Jenner who promised to get me into a better place which indeed he has and through his advice, medication, physical programmed within a year my wheelchair was stored in the attic! Together with my osteopath Victoria Latchem in Dartington, Devon where I live, they are rocks and I look forward to future times of accomplishing the peculiar things on my bucket list!
Each day no matter how I feel I always determine to be:
– up and dressed no later that 9am and try to be earlier than this
– make a list of tasks I want to accomplish even if some go over to the next day
– go for a walk no matter how much pain knowing that gently moving the muscles will help for the next day
– exercise if possible
Strategies are important too like doing the vegetables or similar jobs sitting down at a table or on one’s lap watching the TV to distract from discomfort.
However, with the added stresses of Covid–19 the fight to be positive is more difficult and depression is now an issue which affects me as an artist but also in the home. People are an antidote even if on zoom.
I could not cope without my wonderful husband who does know, asks questions and understand as much as anyone can what it is like to have Fibromyalgia living with me every day although he may dispute this. It is very difficult to see someone you love suffer and get frustrated even if they don’t say anything. I would almost say it is worse for him than me. He became like a carer when I deteriorated and therefore, I would say that if I was on my own further strategies would be necessary.
New research was carried out by healthizes in order to better understand it’s fibromyalgia community members. The online poll sampled 671 people, all diagnosed with fibromyalgia and the results have provided a valuable insight into the connection between fibromyalgia, depression and anxiety.
The healthizes survey revealed that the majority of fibromyalgia patients are also diagnosed with depression. Figures show that more than 63% of those surveyed stated they had been diagnosed with depression and 58% with anxiety.
The connection between the symptoms is a reciprocal one in that one makes the other worse. One person surveyed commented: ‘I have dealt with doctors, friends and family members that don’t even bother to hide their doubts, and even dismiss my symptoms and daily struggles.’
Of those surveyed, nearly 30% had experienced pain for five or more years before receiving a diagnosis and a surprisingly small 8% received a diagnosis within a year. Raised awareness of fibromyalgia could help to decrease this timeframe.
Those suffering with fibromyalgia and depression and/or anxiety should look to focus their efforts on making sleep a priority as well as getting regular gentle exercise and eating healthily in order to help improve the physical symptoms of fibromyalgia as well as mental health.
Happy New Year! I hope everyone had a super spectacular stress free holiday season.
So sorry that I disappeared but it’s been a rather extended round of not quite major and not quite minor flares… hmm maybe I’ll call it a “round” of flares.
No, I’ve got it! The spinning wheel of stress n’ pain; spin it while you sleep, and wake up in the morning to a stressful, painful SURPRISE.
Not all bad though, was busy with Christmas which I mostly did get to enjoy and I’ve been busy working on a secret project. It’s been fun but the stress has knocked me for a loop (ok so really, it’s been many loops). Hopefully tomorrow the stress ends, and I can start to work on the fun part. I’ll get back to you on that.
Have I told you lately how much I blooming hate the agony that is typing? Anyway, I think maybe I’m whining a wee bit too much. Pretty sure that isn’t what you’re wanting to read. So, enough of that!
I did want to say a little more about stress though. I know you’ve heard this before, but please please please be kind to yourself. STRESSkills. I’ve just watched this silent killer attack two people who are very important to me. It’s dangerous and it destroys lives.
I know, I know…I’m one to talk. For three years (well my entire adult life really) I’ve been trying to learn how to deal with stress, how to let things go, and especially how not to stress myself out.
I’m not there yet, but I am much better at dealing with stress than I used to be. I will no longer allow anyone to have control of what I am feeling. The power over my emotions is mine and mine alone.
This was sooooo not my intention, babbling on about stress but well as usual, once I get going you just never know what direction my rambling will take.
Now that life is about to be back on track, pain, and all I plan on doing better. My goal is to post more regularly on the Facebook page and to have something new on the blog at least once a month.
Ta ta for now and wherever you may be I wish for you to live your life stress–free. Hmmm, ok I’ll make that a wee bit more attainable…
I wish for you to live your life almost stress-free
We all want to start our mornings off on the right foot, but it’s not always easy when dealing with fibromyalgia morning foot pain!
The pain we experience and its severity often varies from morning to morning. We cheer on low pain mornings and wish we had the ability to levitate when it is severe.
While there may not be a cure for fibromyalgia, there are ways to reduce morning foot pain that are easy and won’t break your bank account.
Whether from a change in season or the cool breeze blowing from your air conditioner, cold temperatures often trigger foot pain. Cold and rainy days are guaranteed to increase the pain I experience in my feet. One easy way to reduce morning foot pain is to warm those puppies up!
Option number one is to sleep with an electric blanket. I overheat easily in my sleep and won’t sleep well with one on throughout the night, but I love running it for approximately 15-30 minutes while I slowly wake up on a frigid morning.
My second suggestion is actually my favorite because I live in southern California, and there really isn’t very frightful. Being the sweaty Betty that I am, a heated blanket isn’t ideal, but slipping my tootsies into an electric foot warmer, or under a heating pad is perfect!
Either way, options one and two make it possible to comfort your feet without having to leave the bed.
Another option is if your spouse gets up before you, they could fill a hot water bottle to place between your feet.
I love a good reflexology foot massage! It goes beyond releasing tension and pain in my feet, it also reduces pain in other areas of my body. While I haven’t been able to achieve the same results when doing it myself, I have felt and heard a release in tension in my spine, neck, and hips during the foot massages I receive from my husband.
It would be amazing to get a professional reflexology foot massage daily or even weekly, but it’s not realistic. Most health insurance companies do not cover this type of therapy and frequent massages can get quite pricey. And let’s get real, you wouldn’t be reading an article about inexpensive ways to reduce pain if money weren’t an issue. That is why I suggest getting your partner on board to learn about the different pressure points or purchasing a foot massager to enjoy at-home massages all the time.
When it comes to foot massagers, I recommend spending a little more on an electric version that provides a deep tissue massage for your feet and ankles. I never realized how much tension I held in my ankles until my husband began massaging them. Models that also include your calf muscles are even better!
The only reason I would not recommend a reflexology mat or any version that requires you to apply pressure is that we have become so used to holding back when we feel like something is going to inflict pain that we won’t put enough pressure on to achieve the relief our bodies really need. With that said, I know others who say that they are quite happy with them, I am just not one of them.
We pre-treat stains because we know they will not magically disappear overnight. So why is it that so many of us are resistant to pretreating our chronic pain?
Fibromyalgia is not curable, meaning that the odds of waking up pain-free one morning and never having to worry about our feet hurting are slim to none! Although I began experiencing fibromyalgia relief from treating my chronic pain with pemf therapy three years ago, I still experience flares that no machine, pill, or plant can control. However, because I am proactive and pre-treat the areas I know will be affected by weather changes and activity, I experience lower levels of pain less often.
Pre-treating pain areas may feel like a waste of time or a hassle when first practiced. But, if you stick with it, in time you will begin to notice a lower level of pain. Less and consistent pain levels are easier to work with and around. I don’t have to be pain-free to be productive. I just need to be in less pain.
A few ways I pre-treat my foot pain before going to bed include but are not limited to:
Note that I do not do every treatment each night. I mix it up. This includes the types of lotions, oils, and balms I use. The reason for this is that in my 20+ years of battling chronic pain, I have learned that over time when repeating the same treatments every day my body builds a tolerance, and the treatments become ineffective.
If you haven’t gone through your shoe closet and weeded out pairs that are too tight, rub the wrong way, pinch, do not provide support, or do not have cushioned soles, it is time to do so!
Your active and dress shoes should all provide comfort as well as to adapt when a flare causes tendon and joint swelling. We have no idea when and where a flare will strike. Sure we could always carry a backup option, but as I have learned, it is easier and less stressful to leave home in a pair that will adapt.
What I wear on my feet at home is no different. My feet are happiest when I wear slippers that are padded with memory foam that isn’t too thick that I can’t walk right, snug enough to walk comfortably in, and yet loose enough to allow for any swelling that may take place.
Finding the right shoes and slippers may feel like a daunting task, but trust me, once you find a style and brand that you can wear all day without increasing your foot pain, you will easily be able to spot what will or not work in the future.
While I may have loved big, heavy, and clunky shoes in the past, they were all donated years ago. I learned long ago that any pain that could be avoided is always worth the effort.
You may never again know what it is like to live without pain in your feet, but with some changes to your footwear, bedtime routine, and how you address pain, you could experience less pain on a regular basis.
The key to whatever you try is consistency. Only addressing pain when it becomes debilitating or when you can no longer tolerate it isn’t enough. A daily and weekly plan that is adhered to is what will result in a reduction of daily pain on a regular basis.
At first, my illnesses would require a little more rest while away. Because I pushed through pain and fatigue in hopes of keeping up with my family, I always returned home feeling like death. It was not unusual for my body to need days, weeks, and a few times months to recover from a week away from home.
Through the years I have not only made changes to how I address and relieve my chronic pain, but I have made changes to how I vacation too!
Here are a few tips to help you better enjoy your summer vacation!
Do a little research. Locate pharmacies, hospitals, and urgent care facilities that are in close proximity to your hotel. Then verify that they accept your health insurance.
Speaking of health insurance, check with your provider to see what your coverage is while in a different state or country.
Have your most important medicalinformation handy in case of an emergency. Click here to download my free Emergency Wallet Card. Perfect for when you are not able to inform emergency personnel of your health history or allergies. Always inform your traveling companions of their whereabouts so they can access them easily in case of an emergency.
I do not have White Coat Syndrome, where patients experience a higher blood pressure reading when at the doctor’s office. My fear of doctors goes way beyond that.
My fears stem from incompetent care. Not from just one doctor or surgeon and I am talking double digits!!!
My medical PTSD is the result of being ignored, dismissed, having more than one surgeon make life-lasting errors, and many post-op errors that will haunt me for life.
In case that is not enough of an explanation, here is a list of some of the reasons I fear doctors, hospitals, and test results.
Not one test ran in the emergency room indicated that my appendix was about to burst. I spent 7 hours crying from pain and being told that they can’t see a reason to give me more pain medication. It wasn’t until a shift change that the real problem was discovered. The new doctor pressed on my appendix, my body bounced off the table, and he said it’s her appendix. He then prepped me for surgery. My appendix could have burst inside had I not made it through a shift change.
Not one scan showed the giant cyst that was pulling my uterus, left ovary and fallopian tube, and bladder to my sidewall. This too was discovered in surgery.
Not one scan gave the surgeons I begged to help me after my hysterectomy a clue to the horror show that was taking place in my abdomen. A large, infected piece of my fallopian tube was never seen, nor were the adhesions that were strangling my bowels.
I experienced something that I thought would never happen to me prior to the second surgery performed to fix my botched hysterectomy.
The surgeon was reading my test results when he mentioned that my appendix looked fantastic. I stopped him and said that there was something wrong because I had my appendix removed 3 years earlier!!
His response? He argued with me!!!! He insisted that the report was read correctly and that it was mine!
Thankfully, I had already adopted the policy of never seeing a doctor alone. Had my husband not been there to witness this conversation, I probably would have had a mental breakdown.
One would think he would have checked to see if the results were correct or even mine. Instead, he questioned whether I really had an appendectomy….. I told him he could call the hospital where it took place if he had any more questions.
Later after surgery, I asked the attending surgeon if he saw an appendix. He said NO! The validation joy didn’t last long. I soon began dealing with the fallout from the errors he made during surgery.
Think surgical errors aren’t common? Well, they appear to be with me!
Apparently, there is only one surgeon in Arizona and one in California who not only knows about but knows where to find the only sutures that I am either not allergic to or that are compatible with my body. Why? Because no matter how much detail I go into when explaining the type of sutures they need to use, I have had an issue with the sutures and my healing all because they chose not to listen to me or take me seriously.
My incisions became infected from staples and traditional sutures. The ones that look like regular sutures but are supposed to dissolve on their own don’t dissolve with my body’s makeup.
A surgeon was in a hurry one Friday afternoon and didn’t take the time to sew me up properly.
Even after I protested and screamed that something was wrong, (blood has never poured out of my incisions in the past) I was told that it was normal and sent home. Mind you, the nurses who told me this was normal refused to look under my gown to see what I was referring to.
The next day I called the hospital who told me no that it wasn’t normal and to get back there asap.
When I did, they discovered that he left a gaping hole where he had cut into my belly button. I have seen three-year-olds do a better job of sewing!!
It took two years for me to get a surgeon to listen to me.
I was told repeatedly that it wasn’t an OBGYN problem since I had the hysterectomy.
Some refused to look past my chronic illnesses on my chart. While others told me that I needed to see a psychiatrist. But the pain wasn’t in my head, it was real.
Finally, when surgeon number 21 agreed to go in and later shared his findings, I could finally breathe. I wasn’t crazy after all.
During the second surgery to address the errors of the hysterectomy, my surgeon severed a set of nerves between my vagina and left leg.
Later one of the top neurologists in Scottsdale, Arizona informed me that there are two sets of nerves in that area. One that is commonly nicked or severed and that had been researched and there were ways to fix it. The other is a set that is so rarely severed or nicked that there was no research on how to fix it.
Can you guess which one my surgeon severed? That is right! I have permanent nerve damage.
The sad part is that every single one of those surgeons is still practicing and has never been reprimanded by the state that the errors took place in. Why? Because my lawyers and the state attorneys were unable to find a peer to testify against them.
When I woke up from surgery without feeling in my left thigh, I quickly called over the recovery room nurse.
She said that it was normal considering that I had just had back surgery. Except that I didn’t have back surgery and there was nothing normal about my numb thigh or the blood pouring out of my belly.
This took place at a world-renown hospital in Arizona, the last place you’d ever expect to be treated so poorly, but yet it happened to me.
The recovery room staff refused to allow my husband into the recovery area, even though everyone else had someone with them.
My husband had my glasses, so I was blind, but I also couldn’t walk because of the nerve damage and was weak from losing more blood, otherwise, I would have left on my own.
I have had doctors scoff at my allergy list. One actually laughed out loud, that is until he ordered a liquid for me to consume before a test he was running and I had an allergic reaction in front of him after one sip.
Others just ignore my list, leaving it up to me to go through the ingredient list to make sure it doesn’t contain one of my allergens.
Nine times out of ten my prescriptions would have killed me had I not done the research.
Living with incurable chronic illnesses means often hearing the words, this is all we can do or there isn’t anything else we can do.
But that doesn’t make it easier knowing that there is only so much that can be done.
However, all we can do or we are going to blame it on one of your chronic conditions don’t cut it when vital organs are being attacked.
What’s really sad is that I am only taken seriously when I have been in a car or other type of accident. Anything that could remotely be blamed on fibromyalgia, psoriatic arthritis, psoriasis, etc. is…….
I could seriously fill a book about how terribly I have been treated by the medical profession.
With just what I shared in this post, are you able to understand why I am so fearful?
Do you see why I do not run to them until I am sure they cannot blame it on something else?
Can you understand why knowing I need to see someone ASAP for my latest bout of abdominal pain fills me with anxiety?
In 2016 I was told by a handful of surgeons that they agreed that adhesions were attacking my bowels. But each and everyone one of them refused to fight for me after their request to schedule surgery was denied by the head of my HMO’s gynecology and GI department. Their reasoning? The adhesions will return…..
Yes, they will return, but I won’t… especially if they are permitted to destroy what is left inside of me. On the other hand, I also fear that a surgeon will make a fatal error.
I got lucky and was able to find temporary relief outside of normal healthcare practices after being completely shut down in 2016. I just pray that I can get lucky one more time…
