Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


advertisement
Reply
 
Thread Tools Display Modes
Old 11-03-2022, 08:34 PM #1
strizzlow20 strizzlow20 is offline
Member
 
Join Date: Jan 2009
Posts: 139
10 yr Member
strizzlow20 strizzlow20 is offline
Member
 
Join Date: Jan 2009
Posts: 139
My Mood: Not Sure Where I Belong Anymore
10 yr Member
Default Not Sure Where I Belong Anymore

Hi, I'm not new to Neurotalk just haven't posted in a very long time. Started with weird issues a very long time ago. Intermittent muscle weakness, vision distortion (not double vision, not nystagmus, not optic neuritis) that I can best describe as a persistent migraine aura without infarction (no pain). A long the way have continued progressing with more new symptoms such as tinnitus, balance difficulties. I have had an insane amount of testing since 2007. Was positive for Myasthenia Gravis with antibodies from 2008 until 2014 however Mayo Clinic didn't feel that I was clinical with that based on EMG and their neuro exam. Countless Brain MRIs with and without contrast. My muscle weakness started bothering my legs where it would bother me to stand stationary for a long time. I lied to myself and told myself it was just anxiety or stress. About 2 years ago it started getting bad so I forced myself to the gym. Realistically I was only able to make it to the gym by taking Adderall. Last October I had a weird episode I or flare where I experience fatigue like I've never felt before. Almost like the flu but never left. Went through all the tests again, MRI, EMG, and blood work. Still negative for Myasthenia Gravis and everything for Autoimmune. Doctors seemed puzzled because I said my legs felt heavy and felt tingling not actual pain except at night. My feet get very hot and my legs would cramp identical to growing pains. Only thing that came up was ANA was a low positive at 1:80 but RA doctor said that didn't mean anything since I was negative on the other tests. Mayo Clinic is suspecting possible small fiber neuropathy but that wouldn't explain the weakness. They wanted to do the tilt table test to test for the balance fairness I would feel. Problem was it was 12k out of picked with insurance covering 50% and I can't afford that. Around July of this year the pain started. Pain I've never felt where both my arms and legs burned especially in the morning. Started with hands and feet and now it's up to my calves and forearms So I've been waiting since April to see an in network Neurologist with Cleveland clinic who is 100% in network. She is now testing me for several genetic neuromuscular diseases, MRI of Thoracic and Lumbar spine, and referred for a muscle biopsy. She is suspecting mitochondrial issue since this seems to be a slowly progressive issue. I'm thankful for her testing but Ive recent tried to do slow biking on a pelaton and a few pushups and I could barely start. My ankles, muscle above my knees and behind my knees, my elbows, and shoulders are absolutely killing me. My muscles will tremble sometimes especially in my thihjs. I've never had joint pain until the last few months. I'm not expecting anyone to diagnose me here I just don't know which support group I fit in. Negative for Ms, lost my Myasthenia Gravis Diagnosis and as of now the only thing that is suspected is Small Fiber Neuropathy and Mayo believes I have Central Sensitization Disorder (which lumps Fibromyalgia, Chronic Fatigue, ME, etc all in one group). I just wanted to say hello and I'll be around looking at threads. I'm 36, married, and have two young daughters. I struggle mentally because of I'm feeling terrible it makes me feel really guilty. It's like a flu that won't go aware that flares up and down whenever it wants. I have to stay away from alcohol now too I think I'm very sensitive to it all of a sudden and feel really bad the next day. I feel guilty laying in bed and taking breaks when I should be outside playing with my kids. I do push through and work of course but I rest quite often....I quit all medications and vitamins over the summer except for Klonopin which I take 1mg at night because I didn't want those skew any of the blood testing. Just trying to make it through. I hope everyone is hanging in there too...m
strizzlow20 is offline   Reply With QuoteReply With Quote

advertisement
Old 11-04-2022, 04:53 PM #2
agate's Avatar
agate agate is offline
Member
 
Join Date: Aug 2006
Location: Wild West
Posts: 950
15 yr Member
agate agate is offline
Member
agate's Avatar
 
Join Date: Aug 2006
Location: Wild West
Posts: 950
My Mood: Not Sure Where I Belong Anymore
15 yr Member
Default

Hi, strizzlow20.
I'm sorry you've been having so many difficulties. It's hard to know how to treat the symptoms if you don't know the cause but you might find it useful to experiment with your daily routines and see if you can find any changes that will help you to feel better.

In other words, since it sounds as if you've been through many attempts at finding a diagnosis, maybe the way to go now is to give up on that idea and just find ways to do the things you need to do and want to do each day. It might mean changing your sleep schedule, or changing your diet, or changing your exercises, or at least finding out if there's anything that triggers your symptoms and then finding ways to avoid those triggers.

Even if someone came up with a precise diagnosis, many drugs for neurological disorders come with unpleasant side effects and some of them don't work well for some people.

You sound as if you're miserable enough just trying to get along in spite of the symptoms, and by now you'd like some remedies.

I can't suggest anything other than trying a few lifestyle changes but that method has often worked for me when it comes to MS symptoms. The changes had to be really drastic at times but the symptoms were drastic.

I hope that the doctor you are working with will come up with some answers for you, but in the meantime you might want to try to do what you can on your own to work around the symptoms--if you haven't already done that.
__________________
Repeal the law of gravity!

MS diagnosed 1980. Type 2 diabetes, osteoarthritis.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, since 12/16/20
agate is offline   Reply With QuoteReply With Quote
Old 11-04-2022, 09:52 PM #3
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Location: USA
Posts: 27,462
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Location: USA
Posts: 27,462
My Mood: Not Sure Where I Belong Anymore
15 yr Member
Default

Have you been in the same house, apartment or area all this time?
Environmental toxins? Mold, bad water, or anything else might be a factor...
Just tossing that out just in case...
__________________
NT helpful FAQs -
.

NT Search -
.

These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
Jomar is offline   Reply With QuoteReply With Quote
Old 11-05-2022, 01:21 PM #4
strizzlow20 strizzlow20 is offline
Member
 
Join Date: Jan 2009
Posts: 139
10 yr Member
strizzlow20 strizzlow20 is offline
Member
 
Join Date: Jan 2009
Posts: 139
My Mood: Not Sure Where I Belong Anymore
10 yr Member
Default

Thank you 😊
strizzlow20 is offline   Reply With QuoteReply With Quote
Old 11-05-2022, 01:23 PM #5
strizzlow20 strizzlow20 is offline
Member
 
Join Date: Jan 2009
Posts: 139
10 yr Member
strizzlow20 strizzlow20 is offline
Member
 
Join Date: Jan 2009
Posts: 139
My Mood: Not Sure Where I Belong Anymore
10 yr Member
Smile

Quote:
Originally Posted by Jomar View Post
Have you been in the same house, apartment or area all this time?
Environmental toxins? Mold, bad water, or anything else might be a factor...
Just tossing that out just in case...
No unfortunately it's not specific to where I live. I've moved around quite a bit since symptoms started to now, I appreciate the suggestion though 😊
strizzlow20 is offline   Reply With QuoteReply With Quote
Reply

Tags
feel, muscle, pain, started, testing

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Where do I belong? januarybabe New Member Introductions 3 05-26-2014 07:52 AM
not sure if I belong here? kfarneti New Member Introductions 7 09-24-2009 12:16 PM
Not Sure I Belong Here?? Bassetcase Trigeminal Neuralgia 4 08-28-2007 05:23 PM
Not Sure I Belong Here?? Bassetcase New Member Introductions 3 08-23-2007 03:14 PM
Don't know where i belong, sorry fracturedmind New Member Introductions 4 05-31-2007 06:38 PM


All times are GMT -5. The time now is 08:56 AM.

Powered by vBulletin • Copyright ©2000 - 2022, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2022 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.