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jayhawk16

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I was here back in September 2014 trying to see whether or not I belonged here. I have since received a diagnosed of central sensitization syndrome from the Mayo Clinic. Has anyone else received this diagnosed? I have pain, burning, tingling, buzzing, twitching, and jerking all over. Ive had moretests than I can count including 2 EMG and several MRIs.

Just wondering if this sounds familiar to anyone. Thanks
 
Hello Jayhawk. I just read an article about CSS and it seems to overlap symptoms with Fibro and CFS. I'm sure we could all benefit from your experience at Mayo Clinic and a lot of people here have some great coping tips. Welcome.
Sylvia
 
Thanks Sylvia for the invite. I think the CSS diagnosis was due to the length of time I have been in pain. I have not had a pain free day since March 2014. I was there being tested for something else and this is what they gave me instead. Hopefully I can pick up on some coping mechanisms because I wasnt given much info at Mayo.
 
I found another thread in the Recently Diagnosed section of a member who went to Mayo in Jacksonville and received the same diagnosis as I did. She said that it what Mayo refers to fibro as so who knows. Just want to know where I fit in with my symptoms. Been chasing them around for the last 20 months or so. :neutral:
 
Jayhawk,

You didn't mention what you are doing so far. Did you get a referral for a good fibro doc? Are you any meds?

There are many things you can do to help yourself, the first is being very involved in your care. I read everything the libraries had on the subject, then starting going to the web sites. Dr. Teitlbaum has a good one, as does the NFMCPA and more.

Vitamins and supplements are important. Magnesium Malate is usually low with fm, and B-complex. I like D-ribose (powder) as it helps with energy. The list is a big one and is trial and error. Dr. T has some great advise about this. Melatonin helps many to get enough sleep but in the end I needed an Rx. A sleep schedule is very important.

Some find lots of relief from a memory foam mattress topper, hot showers/baths, a heating pad, Stopain or other topical lotions/sprays. I use the spray, let it dry and spray again, it seems to last longer that way.

So here are just a few things to get you started. I know it can be overwhelming, but one thing at a time and step by step you will find what helps you.

Almost forgot vitamin D. So important! If you haven't gotten this tested do so! It's a simple blood test but you usually have to ask for it.

Blessings
 
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Thank you Ruralchick. I appreciate the info. Currently I am not really doing much of anything about it because I am not sure what to make of the diagnosis itself. My PCP and rheumy that I saw made no mention of this.

I apologize for not explaining in more detail as I didnt want to turn people off to my long story. I literally woke up one morning in March 2014 to nausea, headaches, and the worst dizziness I have ever experienced in my life. I could not get out of bed for 3 days. Tested for MS and brain tumor. Both tests were normal.

Ive had sensory symptoms since the beginning in the forms of pins and needles, burning, and buzzing all over. I tested positive for Lyme and did a 15 day cycle of doxy. I was told that I had a false positive for Lyme because I was lacking markers normally found in the body to fight off the disease.

I have seen a rheumatologist for an elevated aldolase level. He was not concerned and he tested me for trigger points which I guess I dont have any of. I have a family history of RA but tested negative for that. Been tested for lupus as well. Also negative.

The muscle twitching began in Sept 2014 and is still continuing to this day. This led me to have an EMG at KU Med and to also have one at Mayo. Both were normal.

I was diagnoseded with BCFS in November 2014 at KU Med. When I went to Mayo in August 2015 it said my BCFS had resolved itself since no fasics were found on EMG and that I had the central sensitization syndrome due to the constant pain Im in.

Currently I have bilateral pain in hips, knees, calves, feet, back, and neck. Its not constant but occurs frequently. I have burning, numbness, and buzzing from head to toe. I wake up stiff and sore every morning as well and havent had good sleep in years.

Sorry for the rant. Thanks
 
Well Jayhawk, Most all FMers have more going on than just the FM. This is a place to dump it and still be considered ok. We all have stuff we can't or won't share "out there". As for me, my dear husband doesn't need to hear all the junk going on every minute. I try real hard not to growl at him as he is so good to me and tries to understand. But how can anyone understand who has not lived with this? It is hard enough for us.
 
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