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'One sidedness'?
8 Replies
9na - July 26

My headaches/tender scalp is mainly on right side. Also my neck is tighter on the right side. And my right ear aches from time to time, and my right eye is severly dry, the left one only a bit too dry (probably sjögren's, my eye doctor says).

My numbness (hands and sometimes feet) are far worse/more often bothers me on the left side.

Is this normal for FMS, to have symptoms 'choose sides' like this?

 

Cher0208 - July 26

Not sure if it is "normal" for FMS. But I definitely have it worse on my left side as well.

 

January - July 26

Hi 9na - do you get migraines? They are one-sided usually. You could have a muscle problem that a massage therapist could help work out. Your muscles might be cramped up along one side of your spine due to the way you sleep or your posture. Also, have you been checked for a misalignment of the spine? Something like scoliosis? Don't really know what your problem is, but I know FMS can cramp up your muscles into tight painful knots and they can cause a lot of strange pains.


Hi Cher - been wondering how you were doing… how is everything going?

 

9na - August 9

Cher - Is everything worse on your left side? Cause for me it's the right side of my head (headaches and scalp tenderness) but the left side of my body is getting numb (hand and foot, often at the same time).

January - My headaches are not as severe as I picture migraines, really. I have hardly never been bothered with headaches before, so I don't have much experience, but my headaches are kind of moving a bit around... For a while there's pressure on my forehead, for a little while there's stinging above my ear, later stinging further back on my head... you get the picture. Only a few places that ususally ache, thought. Sometimes the left side of my head as well, but definitely most on the right half.
I have cinsidered seeing a chiropractor, but I don't think the one in our town is very good, unfortunately... Worth a try anyway, but it's soooo expensive!

I am in a flare at the time, wondering if it is FMS I have or something else - and I've been numb in left hand ang foot for almost 2 weeks, getting better now. My head has bothered me quite a bit, too, and my bowel have been 'acting up' the past 3-4-5 days. Also I'm tired and fatigued, have back and neck pain etc, nausea... Bah. sick of it!

 

January - August 9

A bad chiropractor can do damage to your spine (ask me, I know!) So careful on that front! I don't have any ideas for what is causing your headache moving around as you describe.

Often, numbness is due to a pinched nerve somewhere… but I would say your best bet would be to get checked by a good neurologist. Certain viral infections sometimes affect one side on the body. Also, if you have a brain problem in the right hemisphere, it would affect the left side of your body. The numbness could be a sign of other illnesses than fibro. Is it JUST the hand and foot? Or is the numbness down your arm and leg too?

If you do get a "quick" fibro diagnosis by someone who just hands you a prescription - insist that you get diagnostic workups for all your issues BEFORE you start taking the drugs. And please carefully read up on side effects. They "fibro" drugs don't work well for everyone, and some of them are very hard to stop taking.

Just an idea - celiac disease (which is an autoimmune disease, SOMETIMES with bowel issues) can cause very weird neurological symptoms. Please ask for a test to rule this out. You can search the site for information by putting "celiac" or "gluten" in the blue search box at the right. Or google the terms.

Hope you get some answers and feel better soon.

 

9na - August 9

January - thank you for your answer :)

I am actually going to have a biopsy done to rule out (or in...;) ) celiac. My blood test was fine, but my doc says they often are false positive, so maybe that's it.
But would celiac flare like I do - being much better for a week or two, then worse, then horrible, gradually better again etc.?

I did see a neurologist some time ago, she had me walking across the room in different ways, checked my reflexes and stuff, and concluded that I seemed to be fine.
However, my numbness was not present when I saw here - again the flare thing.

I have not felt numb in armes or legs, no, but I have been feeling some 'rays' up my arm sometimes, more burning than numb.

Brain problem sounds horrible! In my darkest moments I'm certain I have a brain tumor. I'm hoping strongly for a more 'innocent' diagnosis.

Oh, and I don't live in the US. Here, there's no such thing as a quick FMS-diagnosis, it takes years. And medication is very rare, as far as I've understood.

 

January - August 9

I would not recommend the biopsy, but that is a decision you have to make. Read up on it. It's invasive surgery, expensive, risky (the instrument could perforate the intestine wall), and it can be false negative. Your small intestine is almost 20 feet long. They will put an instrument in and take some clippings from several areas. Celiac causes your small intestine to die off in patches. If they take clippings from healthy areas, not diseased patches, you will get a false negative. Some people say the stool test for celiac is the best, I don't know. For me, it was my response to the diet. I read about a man with chronic pain and weird symptoms for decades - he was diagnosed with everything up to bone cancer. But he really had celiac disease - only most doctors don't know much about it. His symptoms sounded like mine, so I went on the diet.

I went to see one of the top celiac specialists in the country. He did not do a biopsy on me. Based on my history and my favorable reaction to the diet, I was diagnosed with gluten intolerance, probably celiac. It took me a year on the diet to see very positive results. HOWEVER, if I get a little flour in a sauce, I feel pretty bad for at least a month. It takes your intestine 3-4 months to heal from the inflammation gluten causes if you have this problem. So yes, celiac flares if you get gluten in your body. Please, before you do anything, google "Dangerous Grains" website - and see if you can find the book - it is a great book. In the back it has an appendix of 5 pages of symptoms that are caused by celiac disease. They look a lot like the list you posted! You can also google "celiac sprue" and see if there is a foundation in your country. Of course, most of the medical foundations will recommend that you get the blood tests (there are several), and the intestinal biopsy also is supposed to be the "Gold Standard." But remember, they are selling medical procedures. The intestinal biopsy CAN come out wrong too. It's up to you if you want to risk surgery and get it. I would just try the diet. If it works for you, there's your answer.

I wasn't thinking brain tumor when I wrote, but rather there are some bacterial and viral infections that can cause brain inflammation (encephalitis). If you live in a country where you have many mosquitoes, you could get a mild case of encephalitis. Most doctors don't think to check you for this. I think it may be responsible for some cases of "brain fog" and fatigue. You might get tested for infections - these are usually easily treated once found.

Remember, the doctor is YOUR EMPLOYEE. You have to educate yourself about fibromyalgia. Click on the blue boxes at the left and read. Read the old posts on this website, as there are many good discussions about various symptoms. You can search your own symptoms by putting the words into the blue box on the right and hit "search." Google the web and read all you can about fibromyalgia and your specific symptoms. (And remember, you can't believe everything on the web, but if you read enough, you will begin to get a feel for what is valid.) You have to do this to get better, take care of yourself. Then when you go to the doctor, you can take print outs of things you have found online, and ask for tests or evaluations. You have to make a partnership with your doctor and work together to get a proper diagnosis. If your doctor won't do this, fire him and find another doctor who will work closely with you.

Some of your symptoms seem like common fibromyalgia ones, but others are a little odd. So, I'd suggest you work closely with a doctor and get tested for things. If your symptoms change, you should keep a diary and every day write down how you feel and any other information that might be relevant. You might want to write down what you eat, or your activities, or medications. You might have allergies causing weird symptoms.

Also, if you google Sjogren's and read, you will get a list of tests that should be run to see if you have that - it can sometimes involve more parts of your body than just the eyes. Maybe that's what you have… I don't know, but wish you luck on your journey. If you can just find out what is causing your symptoms, you may be able to heal completely. Doctors are usually too busy to research everything regarding one person's case - they don't have time any more. So you have to do the work and take it to the doctor.

 

9na - August 11

January - Thanks again for your time and effort to answer me so thorough! :)

The biopsy - well, my doctor wants me to have it, and she reckons that after I've taken it we know what to do next, sort of... So I'm not seeing her until the result is there. (And I have waited for several months now to get an appointment to have it done).
Also, if the biopsy is positive, that gives me some money support every month because of the diet, which would be nice IF I am celiac.

And yes, I will definitely go gluten free after the biopsy no matter what it says! But one year? I'm not sure I'd manage to stick to it that long with little or no results - you impress me!

Symptoms diary - I did that for a while. Noted what I ate, how I felt etc. But I got very tired of it, and also i felt it made me worse, because I thought about symptoms and stuff way too much..

I've been having trouble for 1,5 years now, starting with chest pain/pressure, then my bowel, and after that I've had more and more symptoms really. Some of them are constant, more or less, while others come and go. Also in bad periods there seems to be one or two things that bothers me most, and it differs what that is... (dizziness, bowel, neck, numbness, ears pain/'clogging', head/scalp...).
I'm never 'good', but I have periods where I'm far better.
I would have thought that since I'm never on any diet, celiac would cause me the same trouble all the time until i leave out gluten? But maybe there are 'flaring' in untreated celiac, too?

Well, here I am rambling on...

I'll definitely want my doctor to check out every possibility, hope I won't have to fight too hard, cause I'm not good at that. In the moment when I'm there I find it hard to stand up to such an authority it seems..

Thanks for your useful insights!

 

January - August 12

Hi 9na

If you are eating wheat (or any gluten) regularly, it's possible that you are allergic to something other than gluten - something you eat occasionally, and that may be causing your flares…? If you can get some monetary help with the diet by getting the biopsy, I guess you are better doing that. Just remember that sometimes the biopsy can say negative when you really do have the disease.

It's up to you how much you want to learn on your own, and how much you want to rely on others. Everyone is different. However, the more you know, I think, the better off you will be. Sometimes the drugs prescribed for fibromyalgia can make some people very sick. It's good if you know the side effects to watch for, because the doctors sometimes don't know all these - you can google them easily. If you are reacting badly to a drug, and many of us do, you must tell the doctor - and it's your decision if you want to take it or not.

As for sticking to the celiac diet, I never was able to stick to a diet before! But I got SO ill that I felt this was necessary to keep myself going, and I managed to follow the diet for a year… of course, then I realized it made a big difference, and my blood work all got better, so I knew it worked. If you do have celiac disease, you have to follow gluten-free diet for the rest of your life. It's the only treatment for this disease. Again, it's your choice, I know people who have a milder gluten intolerance, and they still eat bread. I think that is foolish, because even though they don't have severe symptoms now, they probably will later. Gluten is poison for those of us who are intolerant to it and causes our bodies to break down in various ways. I hope your biopsy comes back negative though. And I hope you get some answers as to what is causing you pain. Wishing you the best of luck.

 

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