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23 Replies
maeleann - February 27



Raymonde Laprade - March 9

Hi Maeleann:

I was diagnosed with Fibro last September and have been suffering numbness in my hands, arms and toes mainly at night and in the morning for the past two years. My doctor doesn't seem to think that it's related to Fibro, but I've read that it can be symptomatic in some Fibro sufferers. Some days it's worse than others and I don't know what brings it on. Sorry I can't help out more, but at least you know you are not alone.



chloe3 - March 27

Maeleann: I am so sorry about your health. I know how you suffer and my heart goes out to you. My diagnosis came about because everything ultimately began in my hands, arms, shoulders and neck. I went from doctor to doctor trying to find someone who could identify the problem. Of course, the very first thing they diagnosed was carpal tunnel syndrome after I was sent in for the electrical shock test that is generally given. That test was excruciatingly painful and I cried all the way home. (I'm someone who never cried--ever!) I underwent carpal tunnel surgery in both hands before the doctors finally diagnosed me with lupus and fibromyalgia. I, too, suffer from pain in my joints as well as my muscles, severe pain in my knee, memory loss and, most recently, IBS. To add insult to injury, a year after my diagnosis, the doctors found ovarian cancer. I know you are at the end of your rope--and who could blame you? But don't give up! You can talk to me...I will listen to anything you have to say. I was bedridden for six years and finally decided that I couldn't accept that life anymore. I researched the internet, read every book I could get my hands on, spoke with as many people as possible, and prayed--a lot! I decided that my life was important and purposeful no matter what and I took a proactive mindset and decided to gain some control over what treatment methods I would utilize. Little by little, my life became better and better. Nothing has changed, but just taking some control over my treatment plan has somehow made me feel like a new person. It gave me hope and put me back in the driver's seat. What I found out is that the reality of the situation is I was never really out of the driver's just felt as though I was. I found that I am in a unique position...a position in which I am living each day, experiencing everything that comes along--even if that includes pain. I have four dogs now, which is probably three too many, but that's okay...I decided to adopt three of them from pet rescue. I felt I needed to "give something back" and that was the way I chose to do it. However, in "giving back" I realized that I am the one who had actually been given the gift. I have these four amazing little souls who cuddle with me and who actually want to be with me--no matter what I look like or how long I remain in my p.j.'s during the day. They seem to sense when I'm in the most pain and they hover over me, giving me puppy-dog kisses and lying close to me. Petting them takes my mind off of the pain and allows me some enjoyment in my life. So, when I thought I was "giving something back," I found that I was the one who actually gained. My outlook is different now because I have someone who can't wait for my eyes to open in the morning! Try to find something you love to help take you to another place--far away from your pain. Sometimes pain meds simply don't work, but that "something" that takes you away will always be there. Please write to me if you need to talk. I will always listen. My thoughts are with you! :0)


lmhs1935 - March 28

My 15 year old daughter has fibro. She also suffered with numbness in her hands and feet. Pins and needles too. She is on neurontin now and it has help that a lot. She takes 800mg three times a day. Hope that helps.


moonbloom - July 23

I had the problem and the doctor, after a stress test which was ok, sent me to a nerve specialist. I guess the instrument they used to jiggle my nerves cured me, because I haven't had numbness since.


lmj0720 - November 9

dont give up i have been dealing with this for nine years and just found out that its fm the doctors ran so many test on me i felt like a guinna pig. now that i found out just a month ago what i really have i want to find a way to just feel better i would perfer mot to use meds and go natural. i dont know if you can but that would be my goal. i cant sleep at night due to the pain i have in my shoulder and arm is waking all hours of the night some days are worse than others but i will never give up. finding this web sight and knowing iam not the only one suffering from fm has help me alot. reading the stories of everyone else. now learning to cope with it and move on with my life is the next step. hang in there


punken - November 10

my arms are numb most times, so are my feet. so you are not alone. U do totaly understand what you are going through. I do not know what meds your on but I have started taking natrual caffien. I am not going to lie I still have pain but have more energy to keep pushing myself.


Fantod - November 10

You sound completely overwhelmed and rightfully so. There is a possibility that the numbness that you are experiencing in your arms and hands is from the degenerative disc disease or an additonal problem area in the neck area. You may also have carpal tunnel which is common with FMS. I have degenerative disc disease too so I understand the pain issues associated with it. My quality of life has completely changed. For awhile, I felt like someone had robbed me of my identity. I used to be very capable, and completely dependable. Now, I don't know what to expect when I get up in the morning. I finally decided that rather than beating my head continually against a wall that wasn't going to go away I would have to go with the flow and accept my limitations. This has not been easy, but now that I "get it" things are much simpler. Do you think that your medical team really sees what is going on with you? Sometimes a fresh set of eyes is needed to generate a different approach to so many health problems. I use some conventional medicine and an MD who is also a holistic doctor. The combination seems to work pretty well. The holistic doctor is more intuative about my health picture and made some simple changes that made a huge difference. It is such a struggle to manage daily living and be chronically ill at the same time. You are not alone with any of these issues. I hope some of my comments are helpful to you. Take care and let us know how you are doing.


belong2 - November 12

I too have numbness. I think a lot of it is due to our poor circulation. My fingers, especially the pinky and ring finger, are constantly cold and numb. I have actually looked down to see my pinky bleeding before and I didn't even realize it because the circulation is so poor and I couldn't feel the pain.

I have a question about carpel tunnel. I'm in college and recently my roommate was trying to warm up my fingers by holding them and she said when I bent my fingers it felt as though the joints were grating against each other.
It is painful if I scratch my dog too long, as in the same repetitive motion over and over.
Is carpel tunnel part of Fibro?



Fantod - November 12

A lot of people with FMS also have carpal tunnel. But the numbness in your fingers may be due to another syndrome associated with FMS called Raynauds. Raynaud's phenomenon (RP) is a condition resulting in a particular series of discolorations of the fingers and/or the toes after exposure to changes in temperature (cold or hot) or emotional events. Skin discoloration occurs because an abnormal spasm of the blood vessels causes a diminished blood supply to the local tissues. Initially, the digit(s) involved turn white because of the diminished blood supply. The digit(s) then turn blue because of prolonged lack of oxygen. Finally, the blood vessels reopen, causing a local "flushing" phenomenon, which turns the digit(s) red. This three-phase color sequence (white to blue to red), most often upon exposure to cold temperature, is characteristic of RP.

Raynaud's phenomenon most frequently affects women, especially in the second, third, or fourth decades of life. People can have Raynaud's phenomenon alone or as a part of other rheumatic diseases. When it occurs alone, it is referred to as "Raynaud's disease" or primary Raynaud's phenomenon. When it accompanies other diseases, it is called secondary Raynaud's phenomenon.

I have a great deal of trouble with any repetitive motion. The more I repeat a motion the slower and stiffer I get. You should have your hand/s evaluated for Raynauds as well as the grating noise you have described. You can call your local hospital physician referral service and ask them for a recommendation on a hand specialist. Take care.


serenityartist - November 16

I also have the numbness in my arms and legs and prickly feeling in my face and a buzzing kind of feeling in my upper thighs. I recently was tested for MS due to an MRI that showed several spots in my brain but because I didn't have any spots on my spinal cord, the Neurologist says he doesn't think it is MS. I am currently being treated for FMS with Lyrica but have had no relief from the numbness or tingling sensations.

I was diagnosed with FMS years ago and I went to some group sessions on it but have not looked into it since then. Back then they really didn't know much about it. I am amazed at the things that have been discovered since then. Am beginning to think my doctor has diagnosed me correctly!

I hope others will respond to your question!


cannotaccept - November 18

Hi All... i was diagnosed with Fibro about 2 years ago. I've also had Raynauds Syndrome for years. And receintly been graced with carpal tunnal in both hands. Carpal tunnal is usually recognized before the condition makes it's way up the arms. If that is the case, i fear permanent damage has been done. Ask your friends and family for a referal to a good neurologist and or rheumatologist. I'm in no way qualified, but in my online research, i have seen a few sights that tend to put muscle issues, feeling cold-numbness-tingling-shivers, and carpal tunnal in the same topic. I think there may be something to be found there. If neglected carpal tunnal can cause muscle damage, why couldn't fibro cause nerve damage? (vice versa) hmmm?


belle1329 - March 26

Hi Maeleann
I know Im responding to an old posting and hope you are feeling better this month.
I too was diagnosed after starting with my hands, and waking up every nite with numb hands and arms It was diagnosed as carpel at first but then when I began with other symptoms of pain and numbness in arms wrists and feet, along with blue fingers and toes ,as I have Raynauds, painful joints (knee and now elbows) along with ibs and constant flu like ache. You are not alone hang in there. My numbness has not been as bad lately, pinky and ring finger are the only numbness and I try to stay warm so my feet have been better. Hot baths and stay away from drafts and keep feet covered. Sometimes Im thankful for the hot flashes I get at night, they warm me up, but then I cant wait for them to stop. I cant stand the memory loss and the problem I now have with spelling and typing. I have had to go over this comment several times to correct my type Os and spelling, and still probably missed alot..:-) hang in there!


ericahogan - May 16

I have had severe pain and numbness in my left arm and hand, I have often thought that I was in the midst of a heart attack and my chest would begin to hurt.


belle1329 - May 18

Hi Maeleann
Tha is how I first started with my fibro, a year and a half ago. I thought I had carpel tunnell, until I started with pain in my legs and went to the rheumatollgist. Your not alone, hang in there!


belle1329 - May 18

Im with you lmj0720
I prefer to go with out meds as they do not agree with me.
How are you making out, so far Im able to cope and keep pushing myself. It sounds like you have been doing it longer than I and would like to know how you are managing with out meds.


CharlieA64 - May 30

I understand completely. I have explained to my Dr. and all they say is um! Well why am I having numbness, or my fingers turn purplish.The Dr have said I need to see a neurologist.The neurologist says nothing is wrong...
Sometimes I think Dr's dont have a clue, and will tell you anything. but believe me, this is not in your head. My advice is dont give up keep trying its very fustrating at times, because you look for the Dr's to have some sort of answers.
Good Luck!



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