Back from mayo clinic

good experiece-took every test out there-saw about 10 different docs-the nuero was great along ,with the internist.they feel i have peripheral neuropathy-which they did the nerve tests for(by the best in her field) they gave me gabapentin. has anyone here had the nerve tests done? they d have fibro clinic but i couldnt get in for 2 weeks and didnt want to stay in rochester for 2 weeks with nothing to do. i scheduled it for the end of march when the weather will be better-sub 0 is not my thing'i live in california. leaving mayo i do know i have no cancer and all my blood work is perfect-she even ran the really odd blood panels. i still dont have all the answers im looking for,but alot of stuff ruled out. im not sure if any of it makes me feel better or adds anxiety since i still feel crummy with o energy.

Seems strange to me that I have had Fibro for 30 years and then then suddenly get up one morning with severe chest pains. I went to the Doctor and he did an EKG , which he said was fine. He sent me to a Gastroenterologist who did an EGD and said I had Grade 2 Esophagitis and put me on Prilosec. I went to an Orthopedic surgeon who did an MRI and said my spine looked good except for some arthritis. He sent me to a Rheumatologist who said I had Fibro for sure and never mentioned Peripheral Neuropathy. I found she had put it in my diagnosis papers that she sent home with me but never discussed it with me. Up to that point I just had some numbness in my left foot and signs of Restless Leg Syndrome. About 2 weeks later I started having muscle spasms all night long and could not sleep. My jaws would snap together and my body jumps on and off. My GP is sending me to a Neurologist. I am hoping that he will do nerve tests to see what is going on. Do you have muscle spasms too? What were your signs of Neuropathy?

numbness in feet/hands-burning pain in body-in head ,face,arms-feel crummy allover

Yes, I have had them, for muscle and nerve locally. We were ready to do a road trip to Mayo if I had not found my current Rheumatologist, but thank heavens I did not have to make the ride. I understand that Mayo is really on the ball, top knotch.

So glad you had a good experience, rileybug! Maybe with their help they can turn you onto some Drs in your area. Don't give up!

I had the nerve tests as my feet are very numb and swollen. They diagnosed me with neuropathy of the lower extremities. My feet are so numb I can't feel if I have shoes on....One day there was blood all over the floor as I stubbed my toe and did not feel it. My doctor said it is just another syndrome that goes with fibro. So, I have to wear flip flops all year around as I can't fit into shoes. So, there I left the office and just said to myself, I HATE fibro. it affects everything in your body. It was good you went to Mayo and got some answers. The best of luck to you, Gentle hugs, Tawnycat

Rileybug, good for you for going to a good place and getting a full work up.

Wish I could write more but fingetips huuuurt.

Please keep us updated!


I get those funny nighttime jumps too. And I'm fine until I close my eyes and then they settle in.

Are your chest pains from the fibro?

hi Tawnycat i have issues with shoes too. i cant fit into dress shoes. the best shoe for me has been Crocs. they r wide and have pleanty of space. i have several pair with the fuzzy lining to keep my feet warm in the winter. i was able to fine a pair of new babance shoes i can wear but i had to go to the actually new banace store and they were $110. i hate to spend that but i needed a good shoe. i went into every shoe store in the outlet mall by my house and i could not find any that fit cause my feet swell. i hope u can find some that will work.

Seems like neuropathy goes along with the fibro from what I am hearing. I still have chest pains but after 2 EKGs the doctors just think it is the esophagitis or possibly from the fibro. It sure does freak me out when the pains come but mostly now they are like heart palpatations. Of course with all the medications that most of us take they could be a side effect. Unfortunately most medications don't agree with me. I just wish I had more confidence in my Rheaumatologist. She isn't very communicative just seems to say there isn't much she can do to help except for pain meds. I am hopeful that the Neurologist I am seeing in March has some answers for me. I am a Librarian and it is just my nature to need to find the answers for everything. :) My friends keep telling me to go to U of M hospital for a workup but I can't afford to since I have very poor insurance. Still I am blessed to have less problems than a lot of others. My heart goes out to all of those who are in so much pain and discomfort. Be strong and keep the faith that someone will find a cure for this condition.

HI EVERYONE I’m having major meltdown at the minute. Have been having tingling burning sensations for some time now . Though lately I’ve had pain under right rib , chest palpatations digestion problems. Now I have numbness in big toe and woke this morning with my right hand numb on outer side . Its still numb and hasn’t gone . Wondering if this could be something else so upset and anxious . Had spine Mir and head mri 5wks ago waiting for results . N h s very slow over here in great Britain. Does anyone have any reasurr ing thoughts on this . Thanks for reading

Hi Niknoo

It sounds a lot like peripheral neuropathy which I have been diagnosed with. I have to see a Neurologist in March. I have numbness in several areas at different times. Sometimes I wake up and my whole left arm is numb. It takes an hour or so to get the feeling back. My feet tingle sometimes and it does sound strange but sometimes only in my big toe. Unfortunately with Fibro so many symptoms mimic others that it can drive you crazy trying to figure out what is going on. I take Prilosec for my Esophagitis and that has so many of the side effects that Fibro and Neuropathy have that I'm not sure what is causing the discomfort. Did they do the MRIs because of the numbness? Is there any medication that you are taking that could be causing some of these things? Just make sure that you contact your doctor right away and let he or she know what is going on.

Hang in there and please know that we are there for you. Please keep us posted.

Hi niknoo,

I too have numbness on the outer part of my hands, the Rheum ordered MRIs of upper and lower spine. I see him again in 2 months, then again and again in 2 months. I think if is what the Insurance Co or the state/country program allows. I am sure if they see you more often than every 6 months the Dr personally has to give good reason to see you sooner, or the radiologist who reads the x-rays.

So much is out of our hands and in someone else's, so we wait. Do you have a follow-up appointment with this Dr who ordered the MRI's? If so that is when you will find something out.

Hang in there girl, if you need them sooner you will either have to call or go to the ER, but you know how your system works better than I do as I am in the US.

Hope you feel much better very soon and get some answers!

Love and hugs,


Hi Niknoo, it does sound like you have the neuropathy symptoms that can go along with fibro, the chest palpitations can be anxiety, but you should never ignore those, some can be very dangerous, please see your dr. And cardiologist to be sure it’s just anxiety, they can rule out thyroid, heart disease, medication reaction … Ect.
Have you been to see a GI specialist ?
Fibro seems to cause havoc on all systems… But other things have to be checks out. I have a lot of GI problems, even went to see a homeopathic dr. Tried every GI med they gave me, and the one thing that helped me alot is aloe Vera juice, it’s cheep and taste like water, google the benefits it’s amazing… Of course always check with your dr. First
I hope you feel better, stressing about what could be causing this symptom and that symptom can makes us crazy, and then more stress… Ugh … And we know then more stress, more symptoms.
Hugs & blessing

HI thanks everyone for your support ,numbness still there and have had heaviness in right leg and tingling . Have been diagnosed for about 9 years and until the last few years have suffered these type syptoms the numbness and tingling would go . It hasn’t this time . I am on supplements and 5 http sand paracetamol mostly daily had meds for inflammation of and ospahgeous and stomach for 2 months but they finished Nov . Have pain all right side . Seeing my general practiti
oner on Tuesday with this new symptom . My daughter is disabled and I look after her and work 3 days a week which is getting tougher every week . I am a hairdresser and need my job to look after my girls so worried if it spreads to all my hands . The sensations scare the living daylights out of me. Thanks for being there to talk to . I thought the pain and fatigue was bad enough . Any suggestions of any meds that would help me . Love to you all xxx


I’ve had the nerve test done… They found nothing.but I have bad tingling in feet and hands

Hi Rileybug,

This may be s supid question, but how do you get an appointment to go to the Mayo Clinic and, of course, does insurance pay for it? If you could please give me the info asap, I sure would appreciate it. Thanks so much, Tawnycat

dis u get any info?

it took 6 months-long process-plus the expence flight,hotel.and yes my insurance did pay.

some but i go back in march for the fibro clinic.could not get in for 10 days,it was sub 0 so we figured it was better to come back later.