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I have FM/often told to take vitamins, but they make me ill
11 Replies
p767 - April 9

Just wondering if any FM suffers come across this problem with vitamins. All doctors have gone thus far recommend taking vitamins. I've spent so much money on vitamins, I've even taken vitamins that a doctor only can purchase and give to patients. It doesn't matter if they are multivitamins, Vitamin B complex or calcium supplements . . .after 3 weeks of taking them, suddenly, I get a bad headaches, body aches, severe nausea. I immediately stop taking the vitamins within 3 to 4 days, I feel better. The doctors I've seen, don't understand nor believe me.

Does this happen to anyone? If so, have you found out why? I'd appreciate any feedback.

 

tnichel - April 9

IT'S NOT ABOUT VITAMINS!!!!!!! Jeez that really ticks me off. You need way more than vitamins. You need a doctor who knows what fms is and how to treat it. Ugh!!! This really ticks me off b/c I had the same problem when I was first diagnosed except they just recommended physical therapy.I almost have a nervous breakdown b/c of all the apathy from docs.

Go the national fibromyalgia assoc. website. They have a list of fibro-friendly docs and you could probably find one in your area. I've never had such a reaction from vitamins but it's obviously making you worse.

the thing with fms is if you have another sickness it can trigger a fibro flare which may explain the reaction yo have been having. don't give up and don't let any doc make you feel like it can be treated with otc meds. Are you sleeping? That could make symptoms worse.

Hang in there, be strong, and find the right doctors. at the minimun you need a primary physician to treat day to day symptoms of fms, and a rheumatologist who deals with the overall treatment of fms. A rheumy will also be able to look into any other rheumatic conditions you may have. Most fibro have at least one other immuno-deficiency disease. For me it's mild lupus, and sjogrens syndrome I never would have guess b/c I looked good on paper and didn't have a lot of symptoms for either but no matter how severe the condition, it usually shows up as fatigue which I complained about starting at age 18. I'm 29 now and it took almost a decade to get the right answers. I take meds for both of them as well. Good luck...AND DON'T GIVE UP!!!!!!!!!!!

 

axxie - April 10

Maybe the best thing is to just take one multivitamin instead and see how you do. It could be of the excess bil that does it, in the pit of your stomach and it could be excess. Do you also drink water, the recommend dose of water for someone with fibro is 8 glasses of water, just tap water. If you get of drinking water, try eating ice. I have a feeling it's because your lymph nodes are to thick, which happens to us all and it could be that.

Or what I'm thinking is, you are maybe taking it with your other medication and the combination isn't working.

 

axxie - April 10

Have you been diagnosed, yet, and what meds are you on? Sometimes, doctor will try that approach to help you, but actually it doesn't, it just makes it worse for you. If you are not being treated properly, then I would suggest you go on this site and find a doctor that threats fibro and a rheumy. As your doctor do any tests on you?

 

p767 - April 10

Thank you all for your responses. . . I have been diagnosed 4 years ago with FM . . . I have seen plenty of different specialist. I have seen gone to acupuncturist, chiropractors etc. . .tried alternative meds as well. . . I've been on Cymbalta, pains meds, now on Zoloft and Buspar for Depression and Anxiety. On Singular for year round allergies. I use prescription topical creams with steriods to help control my severe ecezma which I have year round. I don't sleep, tried all types of presciption sleep meds, and also tried melantonin nothing keeps me asleep more than 2 - 3 hours at once. I have yet to sleep thru a night for years. I seem to have massive untolerable side effects to both meds and herbs. My psychiatrist is presently weaning off high doses of zoloft and buspar and trialing them for one full year as they did not help but rather make things worse. I don't know .. I think there's something else going on in addition to FM or perhaps whatever it is, it seems to have the same symptoms as FM.. . . It is recorded, I have been sick since I was a child. I think I was probably born with something . . .aside from a rheumy, neuro, psychiatrist, specialist of alternative medicine that treat FM patients . . .I forgot to mention that I went for 1 full year of phsycial therapy . . what am I missing, what type of specialist should I seek next. Thank you for help.

 

tnichel - April 10

I am so sorry you're having a rough go of it. From your response it does sound like you have some other condition doctors have not caught on to yet. I was sickly as a child too.(little things like leg pains dubbed "growing pains" and illnesses no other kids got)Keep pushing. I was happy to get my diagnosis and seemed to have my fms under control. Now I'm going thru tons of test of unexplained stomach issues.

The rheumy who first diagnosed me said "I don't treat fms but don't give up. find a doctor, if you don't like him, find someone else and keep trying til you get the right one." I started crying b/c no one ever took my symptoms seriously. He said he heard that from a lot of his patients and that's why he kept tissue boxes in all rooms b/c patients were so relieved to find out they weren't crazy. That's the best advice I've ever received medically. Try at least a couple more rheumatologists.

Get and keep a copy of your medical records to take to new appts. or fax them ahead of time. That way each doc gets a look at your entire medical history instead of glimpses of it. Try seeing doctors practicing in hospitals who are involved in research. I got a 2nd opinion that way and it really helped. Also if your doctor sees you got a 2nd opinion, he'll take your case more seriously. A chiropractor helped and well as deep tissue massages. Physical therapy made things worse. From what I hear it only helps when the phys. therapist is up to date on fibro.

Lastly, you aren't going to like every doctor and not all are going to like you. I chalk it up to either 1) bad beside manner 2) different personalities (i always had better luck with women. they seemed to be better at listening). I don't do well and fall apart when docs don't explain what's going on or what I can expect. But I'm a journalist so finding the "why" is a big deal to me. I must have information or I get out of sorts.

Really I hope all of this helps. Hang in there. Oh, and don't let depression make you slow to respond. I realize now I was depressed before I was diagnosed and gave up on doctors for years b/c they couldn't find anything. I wish I had been more persistant so I would have enjoyed more of my early 20's as opposed to sleeping damn near 12-14hrs a day. Fibro hugs and a prayer for you.

 

Fantod - April 12

I would like to point out that many people with Fibromyalgia have chemical sensitivities. I have a very difficult time with medication of any kind. I keep a running list on the computer so I can keep up with it. Every doctor that I see gets a copy of it at each and every visit. I don't care whether they believe me or not. I'm the one that has to put up with the uncertainty of popping any pill and waiting for all h**l to break loose.

In my case, I am simply not able to process them. Which usually results in the "green apple quick step", extreme vomiting, rashes of varying degrees, nausea and profuse sweating. I have learned to keep some Gatorade on hand at all times in case I have an episode.

Many holistic doctors feel that Fibromyalgia originates in the gut. Since 80% of the immune system is there, I think that may be a valid supposition. My father has the same problem with medication, so my problem is inherited.

I reread your post in which you (like many of us) have a great deal of trouble sleeping. I bought a Persian salt lamp a couple of months ago. It came from a company called Solay in Skokie, IL. If you google "Solay salt lamp Skokie IL", the site should come up.

Not all salt lamps are created equal. This company has very high quality products that are fair trade items. The Persian salt lamp is specifically recommended for sleep. I do much better with it than when I am away from home. I gave one to my sister, and she is sleeping better as well.

The Persian lamp is the most expensive lamp but I think it was worth every penny. I bought the largest one available. They all have a radius in which they are the most effective. I am very restless so I figured that I needed the biggest radius available. I am very sensitive to light when trying to sleep and this does not bother me in the least.

All I can say, that when the light is on, the bedroom seems calmer somehow. The light (has a dimmer switch) is subtle and it is only necessary to have the lamp on enough to warm the crystal.

I hope that my comments are helpful to you. Take care.

 

spiercycat - April 12

If the vitamins make you ill; find a kind that doesn't make you ill or maybe eat something when you take them. I promise; from a decade of suffering; vitamins make a HUGE difference. I think the denial of our condition and the frustrations; we tend to ignore simple solutions; like taking vitamins. I live in Washington State and just recently found the magic of Vitamin D. Despite the improvements; today is one of the worse flare ups I have experienced in months (happy easter to me). Despite this; I made myself take my vitamins this morning. It does not stop flare ups. But the days that are good; are better and I give the vitamins credit for the good days being better. Whatever it takes; don't give up. I am always nausious (sp?) and feel sick most ever time I eat; but I still make myself eat. Same with the vitamins. Tetralac (an antacid) and a bottle of Fenegrin (sp?) keeps me working/living and surviving. I have to work full time because I support seven dependants; sometimes HAVING to survive has helped me find ways of living with this problem. Vitamins are VERY important! Don't give up!

 

kctogetherforever - April 17

Oh my, I have the same problem with vits. I now take children multi-vits, 400 vit.e, 1000 b12,Omega 3 1000, and the caramel sugar free calcium chews. I take them after eating at night. I have serious stomach issues and this is the only thing that worked for me. Maybe it will work for you. They made me so sick before the childrens multi and taking them with a meal at night. Hope this helps...Kathy in Tennessee.

 

lalab - April 18

Very interesting thread!! I have trouble with both vitamins and meds. It is all trial and error. I also have chemical sensitivities which make it harder. I know what vitamins I need and I also have learned to eat some food take them and eat the rest of my meal. You can only figure out which ones bother by trying one at a time for a few days.

Medications are the same some make me ill some don't. I also know to rotate them as well as vitamins otherwise I build up a tolerance for and they do not work. Hope some of this helps.

 

txplowgirl - May 5

p767,
Have you tried changing your diet? You might be allergic to gluten, yeast and msg. I was having the same problems and when I changed my diet I was able to take the vitamins without a problem. I have the opposite problem, I can't take precription meds. But a lot of people with FMS are allergic to red meat and dairy as well. Hang in there it's taken me quite a while to figure my problems out. It's a lot of trial and error. I still have bad days but I consider this a personal challenge between fibro and me so one day it might have the upper hand then the next day i'm ahead. I refuse to give in to it.
I hope you start feeling better. Here is a light hug from me.

 

fillisn - May 7

I have FM. I take PowerVites by Turtle Bay Vitamin Co.They really make a difference for the fatigue part. I also had the same issues you had with taking multi vitamins but not with these.

 

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