New To This Board, Need Help

[miche]

Hello everyone, I am writing in the hope that someone might be able to shed light on my current problem, I was diagnosed with fibro fifteen years ago, over the years I noticed a connection between my diet and the degree of pain I suffer from. Mostly I found that eliminating corn, sugars, msg and other preservatives was benificial, since I have a lot of stomach problems I became more and more convinced that I should also eliminate all grains. Here comes the mystery, after completely eliminating all grain product from my diet for two weeks I did not notice any improvements and decided to reintroduce bread, I have since have had a major flare up of fibro and stomach pain, nausea, gas, pain behind my left scapula , zapping pain in my chest, I thought I was having a heart attack, mostly I never slept all night as even laying on my back made my chest too sore, ulcer meds are not helping, got a bit of relief from gaviston, even my legs were shaky and weak,it has been four days sice and I still suffer, does anyone know if this is coincidence , should I go back to no gluten, how come two weeks off gluten did not help, I was told that three days would make a difference, any feedback would be appreciated, I don't know what to do anymore, I am sixty one years old, maybe it's my heart and I blame it on diet

[bluejeangirl]

Hello everyone, I am writing in the hope that someone might be able to shed light on my current problem, I was diagnosed with fibro fifteen years ago, over the years I noticed a connection between my diet and the degree of pain I suffer from. Mostly I found that eliminating corn, sugars, msg and other preservatives was benificial, since I have a lot of stomach problems I became more and more convinced that I should also eliminate all grains. Here comes the mystery, after completely eliminating all grain product from my diet for two weeks I did not notice any improvements and decided to reintroduce bread, I have since have had a major flare up of fibro and stomach pain, nausea, gas, pain behind my left scapula , zapping pain in my chest, I thought I was having a heart attack, mostly I never slept all night as even laying on my back made my chest too sore, ulcer meds are not helping, got a bit of relief from gaviston, even my legs were shaky and weak,it has been four days sice and I still suffer, does anyone know if this is coincidence , should I go back to no gluten, how come two weeks off gluten did not help, I was told that three days would make a difference, any feedback would be appreciated, I don't know what to do anymore, I am sixty one years old, maybe it's my heart and I blame it on diet

If I were you I would definetly stay off gluten. Those kind of symptoms are not fun. A two week trial is not long enough to determine if its working. A person your age won't see improvements for at least a year. If grain free is too hard include alittle rice. I've heard some fibro patients being helped by a low oxalate diet. I don't have time to explain it all but there's a thread on it here that has some good links and a good start with information.

Don't give up it may take several trial diets along the way but I would stay away from gluten throughout. The more you read up on gluten the more convinced you'll be with that.

Gail

[jerseyangel]

Hi and welcome to the board

I think that if you found absolutely no improvement after 2 week of being grain free, that while it certainly could be a gluten issue, I would urge you to have a conversation with your doctor about your symptoms. I think it's important to rule out any cardiac problems--a year and a half ago I had a stress echocardiogram done as it was hard to distinguish the severe reflux I was having from something heart related. (I'm 52)

My results were negative, thank goodness, but since heart problems in women are so often more vague and can mimic other things I personally feel it's worth ruling out.

Having said that, gluten affects us all a bit differently. Since your symptoms seemed to get worse after re-introducing wheat, it wouldn't hurt to try going gluten-free for 6 months to give it a good chance.

[gfjayhawk]

Hello everyone, I am writing in the hope that someone might be able to shed light on my current problem, I was diagnosed with fibro fifteen years ago, over the years I noticed a connection between my diet and the degree of pain I suffer from. Mostly I found that eliminating corn, sugars, msg and other preservatives was benificial, since I have a lot of stomach problems I became more and more convinced that I should also eliminate all grains. Here comes the mystery, after completely eliminating all grain product from my diet for two weeks I did not notice any improvements and decided to reintroduce bread, I have since have had a major flare up of fibro and stomach pain, nausea, gas, pain behind my left scapula , zapping pain in my chest, I thought I was having a heart attack, mostly I never slept all night as even laying on my back made my chest too sore, ulcer meds are not helping, got a bit of relief from gaviston, even my legs were shaky and weak,it has been four days sice and I still suffer, does anyone know if this is coincidence , should I go back to no gluten, how come two weeks off gluten did not help, I was told that three days would make a difference, any feedback would be appreciated, I don't know what to do anymore, I am sixty one years old, maybe it's my heart and I blame it on diet

That doesn't sound like coincidence. I'd encourage you to try staying on the diet longer to see if it helps. I was never dxed with fibro, though I've had muscle pain for years. I went gluten-free after having a positive blood test, then went back to eating gluten when my doctor insisted on doing a biopsy. I immediately started having burning pain in my midsection, and severe pain and muscle spasms, especially around my left scapula. (That had been a trouble spot for me for years.) When I accidentally get glutened the spasms come back. So in my case, there's a definite relationship. It will take awhile for you to see results from the gluten-free diet. If you have celiac, there will still be circulating antibodies causing trouble for weeks, and it will take awhile for your body to heal.

That said, if you suspect heart trouble, you should get that checked out too!

[miche]

Thank you for all your comments, my husband brought me to emerg two nights ago, they did all kinds of heart test and said that was fine, also had a gallbladder ultrasound yesterday , will get the results tomorrow, I keep walking the floor all night , cannot lay down in any position, the pain in my upper back is so bad, then the chest pains, what is different from what I experienced before with fibro is the gas in my upper and lower stomach, I took pantoloc, maalox, gavoiscon, nothing works, the doctor at emerg gave me an inflamatory by intervinis , I got my first night of sleep after, I am seing the doctor again today , will keep you posted, because of the gas pain I suspect celiac also, last time I went to the allergist she said that I had a slight allergy to wheat but she did not seem concerned, I always read that skin prick allergy testing for food were not all that accurate, maybe they are, anyone with knowledge on this issue? I am exhausted, hard to sleep standing up which is the only way I can relieve the pain somewhat, thank's again, I just move to a new city and do not have any friends nor family here, my husband is at work and I am afraid to be alone with this pain

[gfjayhawk]

Sorry to hear you're so miserable! I hope the doctors figure out the problem soon. Keep us posted on what you find out!

Thank you for all your comments, my husband brought me to emerg two nights ago, they did all kinds of heart test and said that was fine, also had a gallbladder ultrasound yesterday , will get the results tomorrow, I keep walking the floor all night , cannot lay down in any position, the pain in my upper back is so bad, then the chest pains, what is different from what I experienced before with fibro is the gas in my upper and lower stomach, I took pantoloc, maalox, gavoiscon, nothing works, the doctor at emerg gave me an inflamatory by intervinis , I got my first night of sleep after, I am seing the doctor again today , will keep you posted, because of the gas pain I suspect celiac also, last time I went to the allergist she said that I had a slight allergy to wheat but she did not seem concerned, I always read that skin prick allergy testing for food were not all that accurate, maybe they are, anyone with knowledge on this issue? I am exhausted, hard to sleep standing up which is the only way I can relieve the pain somewhat, thank's again, I just move to a new city and do not have any friends nor family here, my husband is at work and I am afraid to be alone with this pain

[jerseyangel]

miche,

A shot in the dark here, but after a lenghty elimination diet--guided by my allergist/immunologist, I found that legumes were responsible for my horrible reflux and gas. Cutting them completely gave me almost complete relief--and it cleared my long-standing eczema.

Very often, when a person with gluten intolerance stops eating gluten, other food sensitivites make themselves known. It's not unusual for people with autoimmune disease to have problems with legumes.

[miche]

Thank you all for your replies, I bought some zantac and that helped enough for me to have one night sleep laying down in my bed, however it did not work last night, it feels like the scapula is out of place and should be pushed back,sometimes in the mist of an attack I will stick out my chest while crossing my arms behind my back , I then hear gas and rumbling and the pain eases a bit, can stomach gas hurt that much and cause this many problems, I feel the losec and pantoloc, which are ppi meds for reflux and ulcers are creating more gas but then again it could be COINCIDENCE, i WILL GET THE RESULTS FROM THE GALLBLADDER ULTRASOUND TOMORROW, MY DOCTOR IS PRESENTLY AWAY, FROM WHAT i JHAVE READ GALLBLADDER ATTACKS DO NOT HAPPEN EVERY DAY SO I DON'T THINK THAT'S THE PROBLEM, FROM YOUR EXPERIENCE HOW LONG DOES IT TAKE TO FIND RELIEF AFTER YOU HAVE GLUTTENED UP, I HAVE THE OPPORTUNITY TO VISIT WITH MY SON IN TORONTO THIS WEEK END AND WOULD HATE TO MISS OUT ON THAT BECAUSE OF THE PAIN, OI WENT TO SEE A CHIROPRACTOR YESTERDAY, I TOLD HIM I DID NOT WANT AN ADJUSTMENT , JUST WANTED TO PICK AT HIS BRAIN , HE SAID THAT REFLUX CAN CAUSE THIS MUCH PAIN AND THAT WITH FIBRO IT IS TEN TIMES WORST AS THE NERVES FROM THE STOMACH ARE ALSO CONNECTED TO THE SPINE, ONCE ACID IRRITATES IT THE MUSCLES SURROUNDING THE AREA WILL SPASMS AND THAT IS THE CHICKEN AND THE EGG IDEA OF WHAT COMES FIRST,THE STOMACH PAIN OR THE BACK PAIN BUT THAT THEY BOTH INTERACT WITH EACH OTHER. THANK'S AGAIN FOR TAKING THE TIME TO READ AND REPLY TO MY RAMBLINGS. ALL I EAT IS POTATOS AND BANANAS UNLESS I AM NOW ALLERGIC TO ONE OF THESE FOODS WHICH I DOUBT, BY THE WAY THE CHIROPRACTOR TOLD ME YESTERDAY THAT ALL GRAINS ARE POISON TO FIBROMITES, NO BIG NEWS BUT NICE TO HAVE IT REAFFERMED

[curlyfries]

, FROM WHAT i JHAVE READ GALLBLADDER ATTACKS DO NOT HAPPEN EVERY DAY SO I DON'T THINK THAT'S THE PROBLEM,

I know from experience that gallbladder attacks CAN happen every day---and they were the "curled up in a ball, rolling on the floor, crying" kind of attacks.

[tired47]

Hi! Just wanted to add my advice... I have malabsorption problems- ??? caused by celiac, still unsure but followig the celiac diet. I had severe chest pains, especially at night. Said it was my GB, had it removed and still it went on and on.... I finally started taking magnesium tablets and WOW has it helped immensely. I now carry a small bottle of mag tablets in my purse, and if I feel the chest pain I let one disolve in my mouth ( yucky taste but worth it). Do get your heat checked out jsut to be sure.My malabsorption has caused an arrythmia which Dr. is hoping will get better with time and meds (verapamil).Remember to check for gluten/wheat free tablets. CVS conviently marks there brand on the side of the bottle.

[miche]

Thank you so much for the tip, could you tell me what kind of magnesium , there is magnesium ornate, etc, also it is the kind that you are sopposed to let disolve or swallow , do you let it dissolve so it acts faster? I think this is worth pursuing I always read that magnesium is also beneficial for fibro. Yes I am booked for a heart stress test for next week , however I cannot imagine running for it now as I can hardly walk, I feel like rescheduling , yet I am afraid to in case it is my heart, the doctor at emerg gave me a blood test and an ekg but that simply ruled out having had a heart attack , more decisipons to make......hope I make the right one.

[jerseyangel]

I am booked for a heart stress test for next week , however I cannot imagine running for it now as I can hardly walk, I feel like rescheduling , yet I am afraid to in case it is my heart, the doctor at emerg gave me a blood test and an ekg but that simply ruled out having had a heart attack , more decisipons to make......hope I make the right one.

Don't be nervous about not being able to run--they start out very slow, walking and then they gradually up the speed. The person doing mine always let me know before she would increase the speed, and they told me that it was up to me as to when to stop.

I felt in control, so it wasn't as bad as I thought it was going to be--really Best of luck, everything is going to be fine!

[miche]

Thank you Patti, I almost cancelled this morning, the test is forTuesday, I will go, good news is that I got my results back from the gallbladder ultrasound and my doctor says it is fine, also went back to the chiropractor today and explained my symptoms and told him I had a rib out of place before could this be contributing to the pain in the shoulder blade, turns out I had three ribs out of place which he gently adjusted, I feel that I can breathe for a change, he says I still have stomach issues but that the slipped ribs must have been agonising, so I guess between that and the reflux and the fibro , it made it difficult to function. I am still staying away from gluten, still suspect it is at the source of all my health problems.

I cannot thank you all enough for the advice and the reassurance you all gave me, my husband is the only person I know in this city, we moved here last year, and when he is at work I feel nervous to be alone while going through this kind of pain, hearing from all of you has made me feel less alone. I will let you know how things turn out.

[jerseyangel]

Thank you Patti, I almost cancelled this morning, the test is forTuesday, I will go, good news is that I got my results back from the gallbladder ultrasound and my doctor says it is fine, also went back to the chiropractor today and explained my symptoms and told him I had a rib out of place before could this be contributing to the pain in the shoulder blade, turns out I had three ribs out of place which he gently adjusted, I feel that I can breathe for a change, he says I still have stomach issues but that the slipped ribs must have been agonising, so I guess between that and the reflux and the fibro , it made it difficult to function. I am still staying away from gluten, still suspect it is at the source of all my health problems.

I cannot thank you all enough for the advice and the reassurance you all gave me, my husband is the only person I know in this city, we moved here last year, and when he is at work I feel nervous to be alone while going through this kind of pain, hearing from all of you has made me feel less alone. I will let you know how things turn out.

Yes, please let us know how you do on Tuesday. I'm glad that the chiro was able to do the adjustment on your ribs--I can just imagine how painful that was having them out of place.

I understand the feeling of being alone in a new city--we've moved several times in the course of my husband's career. This last one was only 5 months ago!

Of course, it gets easier but I'm so happy that you've found us here.

[tired47]

Thank you so much for the tip, could you tell me what kind of magnesium , there is magnesium ornate, etc, also it is the kind that you are sopposed to let disolve or swallow , do you let it dissolve so it acts faster? I think this is worth pursuing I always read that magnesium is also beneficial for fibro. Yes I am booked for a heart stress test for next week , however I cannot imagine running for it now as I can hardly walk, I feel like rescheduling , yet I am afraid to in case it is my heart, the doctor at emerg gave me a blood test and an ekg but that simply ruled out having had a heart attack , more decisipons to make......hope I make the right one.

I take just regular magnesium oxide from Walmart, Walgreens, CVS. It usually comes in 250 mg- make sure it is a gluten, wheat free brand ( says on the side of bottle). I take 1 in am and 1 in pm and more if I need to- but it can cause a laxative effect so start slowly. Good luck.

[fedora]

miche,

my ribs on my left side go out of place, my spine curves , and my left shoulder goes out. It has been happening since I was 20, now I am 32. I absolutely now it is connected to gluten. I do not know how much or if anything else is involved yet. I HAVE to go to the chiropractor. I have been in pain for so long. I know some physical therapy but it is just not as effective for me. I understand it hurts and I hope it gets better for you. I understand about being alone. I live in the country and my husband works and kids go to school. I have had some scary moments here. I hope you can make friends with at least a neighbor so if you at least know you could call someone to come over quickly. I have not had to, but just knowing I could helps. good luck with healing and take care.

[miche]

I was once diagnosed with costochondritis and fibro, costo is an inflamataon of the ribs and sternum and extremely painful, I did not recognise a flare up of costo at first because of the stomach issues this time, everything from the waist up was so sore, anyhow I was reading a testimony on a costo site, this lady says she gotrid of her sternal costo pain by following a diet that removed all foods that cause inflammation, wheat being one of course, I decide to copy it and add it to this message in the hope that it may help you, I will give it a try, I eat lots of potatos and bananas, thank's for sharing your story with me, feel free to email me anytime.Here goes the article that might be of interest to you, also please forgive any grammar mistakes I might be making, French is my maternal language and although I make it a point to read a lot in English I know that I

[miche]

fEDORA, i AM HAVING TROUBLE POSTING , SOMEHOW I LOST PART OF IT, HERE IS THE ARTICLE I WAS TELLING YOU ABOUT

been reading various postings and threads on this group site for close to 8 months - and decided to post my own experiences and outcome from costochondritis.

I, like many others, started feeling a sharp chest pain. It then developed into many shooting pains, stabbing pains, even burning sensation pain in the upper half of my body. The pain would be mainly in the chest, but would also radiate through my arms and down to my wrists, around my back and through my stomach. It then progressed into costochondral separation - where my ribs would separate from the sternum. I learned to literally "push" any rib that had popped out back into place. The pain was excruciating and unbearable and was certain that was the end of "me".

Diagnosis took, what seemed to be, a lifetime. After seeing 10+ different doctors, and having a million tests done (CT, bloodwork, MRI, x-rays, echocardigrams, EKGs, etc ...) it was one who finally made a positive diagnosis and could finally begin a road to self, or at least directed, recovery.

The doctors had me taking indomethacin, tramacet, oxycodone (oxycontin), celebrex, pantaloc, amitriptyline, etc ... None of the aforementioned drugs had any real effect in stopping the debilitating pain. I was barely able to walk, sleep, breath or talk properly. My windpipe (trachea), it turned out, was also inflammed.

After reading copious amounts of information, both here and elsewhere, I decided to stop taking the pain medication altogether and start changing my diet. I followed the Dr. Barry Spears prescribed diet (there were others, but this was the one I chose)

Open Original Shared Link.

After stopping my medication, the pain increased quite a bit - but I had to do it in order to, in a sense, start my detox. I then started on a diet of fish (salmon - NOT atlantic salmon!, snapper, halibut, crab), veggies (no potatoes), fruit (not bananas) and water. Cut out sugar, dairy, breads, eggs (the yolks) and red meat. This was supplemented with regular doses of omega-3 fatty acid, vitamin C and turmeric.

Within 7 days I was starting to feel better. The pain had subsided noticeably and my mobility was greatly increased. This was after having been in debilitating pain for about 5 months. The transformation was no less than astounding.

I'm now fully pain free and still continue to maintain my diet and when cooking use ingredients according to the following website (which lists a multitude of foods according to their inflammation properties - if you choose a food then scroll to the bottom, it would show the inflammation propery)

Open Original Shared Link

. I now eat red meat and breads/pasta made from flax. If I do end up eating potatoes, dairy, or something that is inflammatory, I DO in fact feel pain (such as Christmas).

[bareden]

The attacks that you describe sound exactly like mine. I had my gall bladder removed but got no relief from that. I was just diagnosed with Celiac two months ago. I took a while for my body to respond to gluten free. Give it some time. All of our bodies are different.

[nora-n]

I had costochondritis as a hypothyroid symptom, and it went away on thyroid meds, and came beck when under-dosed and went away again on the right dose.

sometimes there are discussions about costochodritis on the thyroid forums and it is not uncommon as a hypo symptom.

nora

[miche]

This is all so interesting, great to get the benefit of all your experiences, I did something real foolish last night, we did go to Toronto to see my son,also my husband's son and his wife .Walking to the restaurant I got the chest and back pain so bad I thought I was going to faint, once I sat down and restrict arm movement it abaded, however by then I was so utterly depressed and scared that I thought to myself the heck with it I am constantly in pain anyhow, I haven't eaten anything tasty in weeks, I ordered the penne with pink sauce like everyone else, it was so delicious, ( haven't touch pasta in years ) I figured I could not hurt more, well my muscle and stomach pain do not seem to be worst however I got up with a ton of nasal congestion partly I suppose from the dairy in the sauce and probably msg , I did not even want to get up this morning and face the day, I am getting depressed and hate myself for not being able to put it together and stick to a plan in the hope that it will work, I guess that is the hardest part as you don't see results right away and just hope that all these restriction will work in the long run, plus I am so tired......

I have been on the same dosage of synthroid for fifteen years, I had it checked again last month and my tsh always run between 1 and two which I read is the ideal range to stay at, so I don't think that's it, there are times when I think I must have cancer that has not been discovered, the doctors thought my mom was a hypocondriac when she went to the doctor for a year with different health complaints, even after she lost forty lbs , they ignored her concerns , her cancer was discovered two weeks before she died, it left me with little faith in doctors.

I think that the fibro was stress induced, I was diagnosed a year after my mom died, that same year my husband of thirty years and I divorced and my house burned down from a chimney fire,I also lost my job for asking time off because of the pain, and was left to be my dad's caretaker , prior to this I was walking six miles a day and was in great shape. I was also on low carbs then but still consumed some gluten in the form of melba toast, after the fibro diagnosis I

resumed a high carb diet looking for enegy ,this was twelve years ago and I have been in pain since and am still trying to put everything together, as you all know chronic pain can be demoralising and stressful , sometimes I get hopeful, on a day when the pain abates I am my old self and think I can get on top of it, if I try this or that, other times like lately I just feel

stupid for still being in pain, inadequate somehow.......like I should know by now it is getting to

me lol My husband is very supportive but my sisters do not understand and I get tired of trying to explain that I do not know why I am hurting , or that fibro hurts and that there are no magic pill for it, last week my sister gave me heck for wanting tests , she felt I should just accept that it is fibro and live wwith it, this week she said it sounded serious and gave me heck for not getting more medical help ha! ha!

[nora-n]

About the thyroid meds, if you go over to the thyroid forums, they say the thyroid meds have to be optimized by the free t4 and free t3, nt just the TSH (unless you are absoolutely fine, then you should not mess with teh doses)

The ft4 and ft3 should usually both be in the upper half of the range, and the exact numbers are individual. But they should be approx. the same height in the range. As a rule of thumb, many need the ft4 and ft3 about two-thirds up in the range.

Some will get their TSH very low when correctly medicated, other jsut around 1 or just below 1. Many people have been hopelessly under-medicated when they were just dosed by TSH alone.

I had costochondritis with a TSH of 0,3 ; my TSH when the free's are just avbove mid-range is 0,02 . (and the doctors sometimes want to lower the dose, and Iy, but I get hypo when the free's are below mid-range)

nora

[miche]

Thank you Nora, my doctor was ordering tsh only, I asked for free T3 and T4 , however I forgot to check on the results and she did not call me, you have a good point and I will check into it, I remember one doctor who felt that my TSH of one was too low and felt this would cause me anxiety, therefore prescribed a lower dosage of meds, I switched doctors then as I felt this would be detrimental. I feel better today and am hopeful that I will get to the bottom of this, the pain level has lessened so my moral has gone up, the sun is out, another plus.