Fibromyalgia and Central Sensitization Syndrome (CSS)

Posted by fightingfibro0505 @fightingfibro0505, Aug 5, 2023

Hey guys. I was at the Mayo Clinic in January 2021 and was diagnosed with fibromyalgia and central sensitization syndrome. My local neurologist thinks I have small fiber neuropathy but I’m waiting to do some testing. I’ve been declining recently and have noticed my knees and feet have gotten weak VERY quickly, along with my feet burning; I do have Raynaud’s Syndrome. I’ve been very dizzy off/on with terrible balance/coordination.

When I wash my hands my knees and feet begin to shake. I’m in my mid 20’s so I’m definitely declining. I have been struggling with chronic fatigue as well and my blood pressure, it seems to elevate to 141/98 when I’m in a warm environment. All of my bloodwork comes back normal.

Has anyone else experienced something similar?

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

SusanEllen66 | @SusanEllen66 | Nov 5, 2023

So, I’m not the only one who has shaky legs when I am brushing my teeth etc. Thank you for mentioning that! I told my doctors and they look at my like I’m crazy.
I share fibromyalgia, polyneuropathy, and other autoimmune diseases with some of you. These “annoyances” have really turned my life upside down and made me pretty much housebound.
I just turned 74 this week. Fibromyalgia has been with me for about 40 years at least. The worst of everything started after I had the flu in March 2015. My immune system went haywire, overreacting to the virus and started attacking me. December of 2015, I was diagnosed with Cutaneous Polyarteritis Nodosa. It’s a form of Vasculitis. It inflamed my arteries and that in turn damaged my small fiber nerves giving me neuropathy.
Things have continued to get progressively worse. Now I have polyneuropathy, Raynaud’s disease, kidney disease, and occipital neuralgia.
My vision has become blurry, and I’m seeing double in most directions. The ophthalmologist has said I need to wait and see, meanwhile my balance is off and driving is off the table.

Fibromyalgia causes extreme fatigue. I’m tired of being tired. I asked my neurologist if he could do a sleep study for me because I wanted to make sure I didn’t have sleep apnea. I did the overnight sleep study and it showed that I have idiopathic hypersomnia. Huh? Turns out it is also referred to as Narcolepsy 2. My brain doesn’t go into a deep sleep at night like it should. Therefore, I am never rested. I’m the walking dead during the day…

Sorry for the “book” I can relate to so much you guys have written. Only one thing, I can’t tolerate any of the pain medicines, so I stick with Tylenol.

teedlum | @teedlum | Nov 6, 2023

Thank you so much! Any idea what month in 2024 they are aiming for?

ripley | @ripley | Nov 6, 2023

In reply to @colleenyoung "We can and will in 2024." + (show)

Thank you.

fightingfibro0505 | @fightingfibro0505 | Nov 6, 2023

In reply to @SusanEllen66 "So, I’m not the only one who has shaky legs when I am brushing my teeth..." + (show)

This sounds VERY similar to the symptoms I experience. I have been diagnosed with fibromyalgia, central sensitization syndrome, Raynaud’s syndrome. I have suspected Vasculitis also but no doctor seems to help me locally. I’m curious how you received your Cutaneous Polyarteritis Nodosa diagnosis? Was it from Mayo Clinic?

Thank you in advanced!

fightingfibro0505 | @fightingfibro0505 | Nov 6, 2023

In reply to @colleenyoung "We can and will in 2024." + (show)

This is great to hear!

SusanEllen66 | @SusanEllen66 | Nov 6, 2023

In reply to @fightingfibro0505 "This sounds VERY similar to the symptoms I experience. I have been diagnosed with fibromyalgia, central..." + (show)

@fightingfibro0505 hi, I developed a medium size lump on my right calf, that was sore, red and painful. It was not itchy.
I went to my dermatologist. His PA did a punch biopsy. Five days later I got a call that I had to meet with my doctor because he diagnosed me with the CPAN.
Fortunately for me, my dermatologist had seen CPAN, which is very rare, several times before so he knew what he was looking at when he saw my biopsy. He wanted to double check his diagnosis so he sent the biopsy to both Mayo Phoenix, and the University of Southern California Medical Center. Both places confirmed his diagnosis.

I was immediately put on prednisone, and titration was done in 8 months. However, the damage was already done to my nerves…

If you think you might have Vasculitis, your rheumatologist would be the one to help you with that.

badger2024 | @badger2024 | Jun 12 7:24am

I have burning in my feet - very bad at night, and to some extent in my hands and the outside of my elbows. I’ve yet to be tested for SFN.

dgetsing80 | @dgetsing80 | Jun 25 6:20am

In reply to @SusanEllen66 "So, I’m not the only one who has shaky legs when I am brushing my teeth..." + (show)

Ask your doctor to check you for Myasteintha Gravis. I had it for a long time before I was diagnosed. It will s an Autoimmune Disease causes all the things that mentioned. Double Vision and muscle weakness is a big indicator. Can be life threatening if you start having breathing issues. Go to o the ER.

SusanEllen66 | @SusanEllen66 | Jun 25 11:29am

In reply to @dgetsing80 "Ask your doctor to check you for Myasteintha Gravis. I had it for a long time..." + (show)

@dgetsing80 thank you. I was diagnosed with Ataxia. I have damage to my cerebellum and it’s causing lots of problems.
My brain is shrinking, and I have Alzheimer’s too.

Your MG is a hard to live with too. I wish you the best.