Finally a certain diagnosis - Fibromyalgia?

[FParchment]

Hi, I was diagnosed with Fibromyalgia Oct this year, but I think my problems started in Nov 2019 with excruciating pain in both thighs.

This is a long post, as I have to get my thoughts out.

In 2019, the sudden pains had me nearly screaming in my bed like a tantruming child. It lasted for around 2 to 3 months and I was dx with muscle or tendon injury - 3 months later it happened again for the same duration. I started to get a permanent butterfly-shaped rash on my face.

The pattern continued and added my upper arms then my neck. When there weren’t these debilitating pains, there was increasing weakness, tingling and numbness in my hands and feet; every 3 to 4 months something else was slowly added to the equation. I got pains and weaknesses, to the point of trembling of my neck and head, when not supported.

I did so many tests with specialist consultans: dermatology, autoimmune, gastrointestinal, psychological, allergies and even cancer tests. Multiple MRI’s, ECG, CAT scans, and I could sit and name more. I ended up with carers 4 x a day, as I needed multiple walking aids and even a pillow lift.

I was on 600 mg of pregabalin and 4g of paracetamol a day. I now take 400 mg tramadol with the paracetamol a day for pain and on a waiting list for Lidocaine infusions every 3 months by pain management.

Finally, I had the ‘it must be fibromyalgia’ from my primary GP. The confusion is I’m hypothyroid, type 2 diabetic, use an anal irrigation system (because I have central nervous system weakness and can’t feel the urges to poo or wee), pancreatic insufficiency and diabetic neuropathy. I am sight-impaired, I have a non-hormone producing 4cm benign tumour on my adrenal gland and I am Autistic. I have 2 - 3 ‘episodes’ per week of temporary paralysis with life-changing fatigue and epilepsy was ruled out, after I lost all use of my muscles and dropped on my chin and dislocated my jaw and spent 6 days in hospital. I have lost nearly 100 lbs after weight loss surgery 2 years ago.

All along, I was treated like it was anxiety and depression, ‘in my head’, or had learning impairment or caused by morbid obesity.

I take 37 pills per day, including the maximum dose antidepressant.

My pain is constantly at around 5 with this medication, I now work from home (with adaptations and equipment) and I can’t wait to come off of other pain medication with the infusions and get my life back.

Has anyone experienced anything similar? Especially the temporary paralysis after a brain-melting trigger? The severe fatigue, where you can hardly open your eyes or move? Slow movements, where you are coaxing your brain to lift your arms, legs, neck or feet?

I have felt like a hypochondriac with nothing better to do but turn to the people considering me that.

With this fibromyalgia diagnosis, I feel like there is a reason and I’m determined to advocate for myself to find relief.

Thank you for reading.

 

[sunkacola]

Hello, @FParchment , and welcome to the forum. You have certainly been going through a terribly rough time. I cannot say that I have had experience similar to yours, but I didn't want to read and run, or let you think that no one would respond to you. I have, and do, experience severe fatigue, to the point of not being able to think or move, and end up just lying on the couch for hours barely feeling alive. This used to happen to me more often than it does now; these days the fatigue is of a lesser degree but it is more constant, and honestly I don't know which is worse.

I cannot help but wonder if your level of fatigue could be caused by the large dosages of medications you are taking. I am not in any way suggesting that I can second-guess your doctors, of course, as I have no medical training, but sometimes being on high dosages of meds, especially opiates, can cause debilitating fatigue and can actually increase your pain levels, so you might want to think about discussing this with your doctor.
I hope that in some way we can be helpful to you on this forum, and you will find support here, because that's what we are here for.

 

[FParchment]

The temporary paralysis began about 6 months before starting Pregabalin, but that made me gain so much weight and in the end stopped working. I haven’t noticed any worsening with Tramadol or weight gain so far.

The other stuff have been with me before it all started as well, but the GP did say the lidocaine infusions would decrease my Tramadol.

I will talk to him about the antidepressant though, good call

Thanks for taking the time to read and respond.

 

[sunkacola]

One thing to note is that just because you have been taking a medication for a long time doesn't preclude it having a different effect on you over time. Again, I am not saying that I know the meds are causing you problems, only saying that it's possible.