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Ok, so I've got it. Not that I wanted it. But it explains a lot.

By Shirley BelkPublished 3 months ago 7 min read
Depends on the Day

Ok, so I've got it. Not that I wanted it. But it explains a lot. And once a medical doctor diagnosed me with it almost two years ago, I could relax a little. At least I knew I wasn't going crazy. And I could stop drinking those Jack Daniels & Coke just to make the pain lessen and to help me sleep. (Anyone who knows me, knows I'm not a big drinker and anything carbonated flares up the old interstitial cystitis that I'm also blessed to have...so I couldn't win.) Interstitial cystitis (IC) is a relatively uncommon and enigmatic disorder characterized by pain in the bladder and pelvic region, typically accompanied by urinary urgency and frequency. Fibromyalgia is a more common disorder, with the prominent symptoms being diffuse musculoskeletal pain and fatigue,... IC patients display diffusely increased peripheral nociception, as is seen in fibromyalgia. https://pubmed.ncbi.nlm.nih.gov/9201654/

I think it (signs & symptoms of fibromyalgia) all started with me after my first bout with the Covid 19 virus and the development of a blood clot that came from ordeal.

***What are the risk factors for fibromyalgia?

"Known risk factors include: Age. Fibromyalgia can affect people of all ages, including children. However, most people are diagnosed during middle age and you are more likely to have fibromyalgia as you get older. Lupus or Rheumatoid Arthritis. If you have lupus or rheumatoid arthritis (RA), you are more likely to develop fibromyalgia. Some other factors have been weakly associated with the onset of fibromyalgia, but more research is needed to see if they are real. These possible risk factors include: Sex. Women are twice as likely to have fibromyalgia as men. Stressful or traumatic events, such as car accidents, post-traumatic stress disorder (PTSD) Repetitive injuries. Injury from repetitive stress on a joint, such as frequent knee bending. Illness (such as viral infections) Family history, & Obesity "https://www.cdc.gov/arthritis/basics/fibromyalgia.htm#:~:text=Stressful%20or%20traumatic%20events%2C%20such,Illness%20(such%20as%20viral%20infections)

This was at the crux of my impending retirement. Yes, I was getting older and attributed some of my fatigue to working the long hours and also to the stressful, traffic-ridden drive in the city like I had done almost daily in my earlier years. But it was getting more and more pronounced. I won't go into the possible stress, anxiety, and depression that the changes in my marriage were bringing about. To be completely honest, though...I considered that my "norm." So, I didn't pinpoint those issues as particularly "key," except that with the blood clot medication, I had to cease taking the anti-anxiety pill. (Now, every untapped emotion that I had never truly dealt with, was coming to life for me...and others around me...to contend with.) Fun times.

The Covid went away, the blood clot eventually did, too. But the pain, the fatigue, the restless legs, the lack of sleep, and the overall anxiety lingered, then subsided, then flared, and came and went relentlessly. It was an unholy routine I wanted no part of. By that time, I had decided to never get back on anti-anxiety or antidepressants again. (Getting off of them had been hell.) Until I was officially diagnosed, I just dealt with dancing in the kitchen while cooking on good days and writhing miserably on bad days. To be fair, I later paid for the dancing, but it was worth it to live life. (Just to let you know, fibromyalgia is different in everybody...in fact, it shows up in different ways and places for me all the time.)

***What has been the medically evolution of fibromyalgia?

I had heard of fibromyalgia before. Of course, I had. I am an RN. But what it is, the criteria for it, and how widely it is accepted and understood, is another story altogether in the medical field. And to be honest, before I "got it," I didn't really accept or understand it. In fact, I thought it could have been a hypochondria of some sorts and I never gave it much credence. Shame on me! But, alas...I am not the only professional to waver in my beliefs about fibromyalgia. The jury is still out:

"In the 45 years since it was first named fibromyalgia, it has taken on generally accepted criteria. Much is now known about the pain of fibromyalgia, including nociplastic pain and central sensitization. Serious, well-performed scientific studies have established beyond doubt that fibromyalgia pain and distress are “real.” Similarly, evidence of the importance of psychosocial symptoms has accumulated, and psychologic features are accepted as part of the disorder. Despite these findings, fibromyalgia has only partial acceptance, and diagnosis is uncertain and unpredictable. Factions contend as to whether fibromyalgia should be best considered a primary pain disorder fueled by central sensitization or a more broadly based functional somatic syndrome or bodily distress disorder...might be a universal condition of mankind at differing levels of severity." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8716007/

***What causes fibromyalgia?

"Pain research has uncovered important neuronal mechanisms that underlie clinically relevant pain states such as inflammatory and neuropathic pain. Importantly, both the peripheral and the central nociceptive system contribute significantly to the generation of pain upon inflammation and nerve injury. Peripheral nociceptors are sensitized during inflammation, and peripheral nerve fibres develop ectopic discharges upon nerve injury or disease. As a consequence a complex neuronal response is evoked in the spinal cord where neurons become hyperexcitable, and a new balance is set between excitation and inhibition. ...Conscious pain is generated by thalamocortical networks that produce both sensory discriminative and affective components of the pain response." https://pubmed.ncbi.nlm.nih.gov/17087118/

In layman's terms, people with fibromyalgia are over-sensitive to pain, cold, heat, and even stress. The body responds more intensely. It is more easily triggered. Sadly, even good touch hurts sometimes. Everyday events, like noise and smells can precipitate flare ups, too.

***How is fibromyalgia diagnosed?

Answer: Currently, there are no specific lab or diagnostic tests. Typically, a rheumatologist may rule out other possibilities (such as lupus and other diseases by blood exams.) But then a physical exam and a thorough history/physical are performed to identify fibromyalgia.

***How is fibromyalgia treated?

I was lucky to find a doctor who was a good listener. And he and I together chose as to come up with a game plan to treat this enemy. There isn't a cure. I would just have to learn to live with it, pick the treatment best for myself, and hope for the best. I needed immediate relief from the pain. And I needed sleep. I did not need anything that caused weight gain or dry mouth. And I did not want antidepressants or anti-anxiety meds. (Kudos for the doctor dealing with a headstrong, willful nurse like myself.)


The above article goes on to say, "Treatment regimens for fibromyalgia have never been clinically compared. Since there are no direct clinical comparisons of the FDA-approved drugs, a systematic review was conducted to determine the similarities, advantages, and side effects of these medications...Fibromyalgia is a difficult disorder to treat. Based on studies and recommendations, it would be advisable to first treat patients based on their most significant complaint."

Well, I had familiarity with the choices, but I encourage everyone to make informed decisions regarding their medications. I chose Gabapentin, a drug originally used to treat seizures. At first, my dose was too high. I felt drunk. I couldn't put two words together to make one sentence. But I didn't have pain and I slept! I had to tweak my dose until I found a solution. Now, (with my doctor's acknowledgment,) I only take it as needed. There are some days I don't need any medication, but there are other days, I have to take up to three capsules to ease the discomfort. Most of my discomfort pops up right before the evening turns into night. I can't explain it, but maybe my body just says, "rest now."

The above article is very interesting about the usages and side effects of Gabapentin. I felt like it needed to be included and read, because chances are, with the way that medications can be misused, it wouldn't surprise me if this might be something else that could be taken off the market.

I also try to walk daily to prevent stiffness and deconditioning. I've never been one for massage...it kind of hurts, and would defeat the purpose rather than helping me. Faith and writing journals/stories sustain me mentally and spiritually, which soothes the savage beast, too.

I do want to be quite frank about something. There are days and flare ups that can be downright debilitating for me. I stay in bed then. And my housework might not get done. My hair might not get brushed. I have learned to be okay with that part of me. If you have fibromyalgia, don't put excess pressure on yourself. It just makes it worse.

I hope this helps those with fibromyalgia and those that love people with it, too. Don't give up. Find something that works and continue to live your best life!

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About the Creator

Shirley Belk

Mother, Nana, Sister, Cousin, & Aunt who recently retired. RN (Nursing Instructor) who loves to write stories to heal herself and reflect on all the silver linings she has been blessed with

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Comments (6)

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  • Christodoulos Peratikou2 months ago

    Good article. I wish you to transform the pain to pray.. Don't give up,, because you are not alone.

  • Tiffany Gordon 2 months ago

    Thank you for spreading awareness! I am a fellow FM Warrior. You explained things beautifully! Thx for the encouraging words also!

  • Excellent article... sorry to read of your diagnosis... I have a few friends with it & it sure isn't pretty. Hope you get some relief & decent management of it.

  • I'm so glad you found a doctor who's a good listener. Most doctors are so arrogant and are so dismissive. Some won't even believe what we're saying. It's atrocious. Anyway, this was very informative and well written!

  • Mark Gagnon3 months ago

    I have heard of this ailment but didn't understand what it was. Thank you for the explanation.

  • Lana V Lynx3 months ago

    This was very educational. I only knew about fibromyalgia from the movies and TV shows where it’s made fun of as a phantom disease.

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