By Michele,

This is my Fibromyalgia experience (posted in a Fibro group to get information – edited some for people who might know nothing about Fibromyalgia):

Hi all. First I want to say, my heart goes out to you. This is a really difficult thing to live with. I have some questions for you at the very end of my long post.

Symptoms:

My symptoms are the deep pain, mostly I feel it in my neck, arms and legs (including hands & feet), especially my knees and my neck. I have the severe fatigue. I have the brain fog and memory issues. I have headaches that go with all of this. I have the sleep issues. I have or have had just about every Fibro symptom there is except allodynia.

I started tracking the symptoms late last year and the pain & fatigue symptoms are especially bad about 14 days per month, but I almost always have some pain at some point in each day and my memory is consistently really bad. I’ll notice sometimes that I’m pain free and I’ll feel it start during the day but I have no idea yet what might be triggering it or if that’s even how this works. I’ve also noticed it go away during the day. I assume because activity is helping but activity doesn’t always help. I don’t think any of this really has anything to do with it, but I eat fairly healthy (I haven’t always), I don’t eat a lot of sugar or gluten or anything that people say might trigger it. I’m otherwise physically healthy, no other issues. I am a high stress person which is thought to be a trigger but I can be without stress and still have the pain and other symptoms so it’s not all about that.

Comorbidities:

I’ve also been diagnosed with PTSD and ADHD. I have anxiety & depression. I did a neuropsychological evaluation in June and I have disabling impairments in several areas of memory, processing speed, and attention. My intelligence is high average despite the impairments. All of these things that can happen with PTSD and ADHD can also happen with Fibro. They’re frequently diagnosed together and they share many of the same symptoms.

Diagnosis:

I was diagnosed with Fibromyalgia in May. I have no idea how long I’ve had this pain and all of the symptoms because it’s been my norm for so long, but I know at least for 15 years because after I was diagnosed, I recalled a conversation I had with a coworker with Fibromyalgia around 2010 and when she told me about it, I remember saying that it sounds like really bad PMS. Her symptoms sounded like mine. All of these years, that’s what I thought was the cause of the pain & fatigue –  really bad PMS, but I don’t have the thing that she described where touch hurts, allodynia, so I never considered that I might have this too.

  1. I’d had blood tests a few times over the years with my PCP and never had any autoimmune things come up, no inflammation markers. Just a thyroid level that was borderline a couple of times which I took medicine for but it didn’t help this stuff. I was really confused when I saw that there was no inflammation. I thought, what in the world is causing this body pain? What is happening in my body to cause this pain?
  1. Because I thought this was PMS, last year I was working with my obgyn trying different birth control and hormone options, again….. I’ve done this several times over the years. Finally I told her that I want a hysterectomy. I assumed I had PMDD and saw some videos where some women felt much better after the surgery but some didn’t. I was at a point where I was feeling desperate and I just wanted it to stop. She referred me to obgyn surgeons.
  1. One of them told me that my symptoms sound autoimmune and referred me to a rheumatologist and told me a hysterectomy is a bad idea.
  1. I went to the rheumatologist, she did the blood tests and the xrays and I’m perfectly healthy as I figured I would be and that’s when I got the Fibromyalgia diagnosis. I was skeptical and I asked her if this is just a “catch all” diagnosis and she told me no, there’s research to back it up and she explained how the brain is involved and how this is thought to occur. She said the only treatment she recommends is exercise because meds often don’t work. I’d already noticed Tylenol & Ibuprofen don’t work. She referred me to a pain specialist.

For some reason, it’s a hard thing for me to wrap my brain around Fibromyalgia. I think it is for a lot of people unless you understand pretty well how the brain works with the rest of your body. I have a surface level understanding. I still don’t feel very comfortable talking about it. I still feel alone with it because of how complicated the whole thing is. I do feel some validation though that this has been really hard for a very long time and I’m not just a weak person. I know this is something that has been extremely challenging but it’s still an invisible illness and humans have a hard time understanding something they can’t see with their own eyes and we still have to function. I still want to “show up” and I almost always do now. In the past I didn’t do such a good job with that.

Treatments:

I was prescribed Cymbalta and for some reason I felt much better for about six weeks, the pain was less frequent and more mild. I don’t know why that is because the pain returned and I was in tears out of frustration and something I noticed is that when you go without the pain and other symptoms for a while, when it returns, I was more acutely aware of how bad it is because I had feeling good for a longer while to compare it to.

I bought two full body massage mats. One for my chair and one for my bed which allows me to use it when I don’t feel like getting out of bed and sometimes I fall asleep with it. I have a neck and body massager and that helps my neck feel more relaxed. Going to get massages helps but it’s expensive for frequent treatment and not covered by insurance.

My psychiatrist suggested muscle relaxers which I was initially opposed to because I dont want to take anything that would increase fatigue and mental fog but I read about some options and Robaxin seems to maybe be a good option to take at night. I went to my PCP office and he said it wont help because fibro is nerve pain. I went to the pain specialist and got that prescription along with one for Lyrica. She said both could help. I’m just waiting for them to arrive in the mail to try.

She also wrote me an order for physical therapy including aqua therapy. She mentioned steroid injections but I don’t think I want to do that. Have any of you tried that? Does it help? I don’t think frequent steroids are good for you.

I have a TENS machine and that helps a bit. I wish there was a full body TENS I could buy.

My PMS/Depression theory:

This false belief that what I was experiencing was “bad PMS” caused me to go undiagnosed for a very long time. It wasn’t anyone’s fault. It’s still a possibility that hormone fluctuations cause some of my Fibro symptom flares. I’ve never really had a period because I avoid them by using birth control because the few that I’ve had in my life are awful. I’ve almost passed out from that pain – like I had to find a place to sit down really quickly or I was literally going to black-out faint. Which now I know that women with Fibro can have more painful periods. In hindsight, I had no real reason to think this fibro stuff was PMS, I just assumed it was, because I had no idea what else it could be. I just assumed this is part of the hormonal fluctuations of being female, that it really sucks, and I thought other women seem to manage and thrive so I’d get extremely depressed and even suicidal when I felt I couldn’t function at times. I didn’t really talk about it much because of what I thought it was. I felt lazy and worthless sometimes. Men get Fibromyalgia too so it’s not just a PMS thing. I’ve also heard pain and fatigue and all of this stuff can be caused by depression but I have the Fibro stuff with or without depression so it’s not just that either.

The benefit of the diagnosis that I feel is validation and having things to try instead of thinking that the pain and everything is just pretty much unavoidable.

I’m interested in hearing your observations on these things:

  1. Have you identified triggers that start your flares?
  2. Did you notice when it first started and can identify what caused your Fibromyalgia?
  3. What helps you feel better?
  4. What types of doctors do you see?
  5. Does chiropractic care help at all?

Thanks for reading and if you can answer any of my questions.

From the NFA:

• Our members report many differing things that can bring on a Fibro flare. Of course overexertion can cause flares. Many people have found that too much sugar and other highly processed foods aggravate the inflammation that irritates your fibro symptoms. You might also want to keep your alcohol intake to a minimum!

• It seems that either an illness or a physical trauma proceeds most Fibromyalgia Diagnosis. Unfortunately it is different for all people!

• Most fibro patients see either a Rheumatologist or a pain specialist, however not all of these doctors will treat Fibromyalgia. You might want to ask the receptionist if the doctor will see fibro patients before you make an appointment.

• Chiropractic help can be very intense and there for not always the best idea. Most people do feel that massage therapy helps them a great deal. Also doing stretching and mild exercise in a warm tub or pool helps!

Thanks Michelle!!