AnonymousMarch 10, 2010 at 6:39 pm
I think GBS symptoms are very similar, and are sometimes treated with the same drugs (Neurotin, Lyrica), but hold on the thought that one triggers the other. After GBS our bodies are trying to reconnect nerves which can cause all over pain. Each time a muscle fires (wakes up) again we often experience pain. My rehab doctor kept telling me the more I worked the greater my pain could become. (could – not would) I have found that some days I hurt all over, and on those days I just rest. That helps a lot. On days when I feel good I allow myself to be more active. I am so new in my recovery (onset Dec. 25, 2009) that rest, patience, and faith are my best friends.
When you hurt all over, your feet feel like blocks of ice, your hands cramp up or you just wonder why you got stuck with this remember – just eat some chocolate and pat your dog. That seems to help me. And pray – – –
AnonymousMarch 11, 2010 at 10:11 am
Thanks Cathie. I have been more active so I don’t know if that is what causes more pain. I have more burning pain, and very bad pain in my elbows and all over. My gastro problems seem to be worse. I was just reading about the symptoms for fibro and it seems like I have a lot of those. However, there are so many autoimmune diseases that it is hard to know. The doctors seem kind of stumped with me. They think I had mild GBS, but I never had a spinal tap to confirm. I am getting some more bloodwork and another MRI. The last neuro I saw said that it is an autoimmune or inflammatory reaction to the vaccine. But I do not have a diagnosis or treatment, so I suffer. Hugs from my kids help and chocolate too, but I can’t eat much of that due to my gastro issues. Sigh….one day at a time I guess.
March 11, 2010 at 10:15 am
I responded to you somewhere else that you were on yesterday, did you see it? Maybe you are allergic to choc. we just found out we were:(
AnonymousMarch 11, 2010 at 10:18 am
Dawn, Yes, just did. Thanks. I have had long-standing gastro issues before I even was struck with GBS. I even had a weird stomach virus in July, just 3 months before the vaccines. I was tested and nothing came up, and then poof, after 2 weeks it went away. I have thought that maybe this had something to do with why I reacted the way I did to the vaccines, having the flu one in September and then the H1N1 in November.
AnonymousMarch 11, 2010 at 3:07 pm
Ok so now all this fibromyalgia research (googling again when I should refrain), has led me to all these sites about pain management centers, etc. I found a Wellness place in Chicago that has all different kinds of disciplines on staff along with an internal medicine doctor such as homeopath, acupuncture, even psychologists. I am going to check this out. Has anyone tried alternative methods such as homeopathy, other methods for pain relief? Any luck?
AnonymousMarch 12, 2010 at 8:06 pm
JH, just responded on another thread. I had a stomach thing and very mild sore throat before GBS. I also never had a LP. I had stomach problems over some years. Docs have recently diagnosed me with probable celiac, which they think set me up for GBS. Has anyone mentioned that possibility, or does anyone in your family have it? I am the first in my family, but looking back, I think my mom had it also.
AnonymousMarch 12, 2010 at 9:31 pm
luv2sail, my mom has had a lot of GI problems over the years. We have a lot of lactose intolerance in my family. My mom told me that as a baby I couldn’t drink milk for a while. I have always been very sensitive. Both times I went to Mexico, I got a GI infection and even in Italy…who gets sick in Italy!! I ate all the pasta and pizza anyway..I remember it hit me when I was at the Vatican City and I was just praying for it to go away!! 🙂 Maybe there is some GI connection or predisposition. We are the lucky ones…huh?
March 12, 2010 at 9:47 pm
You have to get that elisa allergy test. The gi issues increase with cheese, milk, mushrooms beer bcp sugar (pasta, carbohydrate) Every time you expose yourself to these, the candida grows. As well every time you expose yourself to an allergen your histamines increase and hormones etc go out of whack. All of these neuro toxins escape through the compromised gut and make you sick. You mentioned your hormone test was ok, was it tsh, t3 t4? Sometimes proir to a hormone problem you fluctuate between hypo and hyper thyroidism which might account for your hot flash type symptoms. Call me if you like.
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AnonymousFebruary 9, 2008 at 12:30 pm
My daughter is a Physician’s Assistant and frequently sees my pulmonary doc who asks how I’m doing. She told him that I hurt all over and he said could the GBS have sent me into Fibromyalgia ? Any thoughts on this? At Gene’s suggestion, I talked to my neurologist and asked about neurotin for the pain I’m in. Neuro said good idea. So I’m up to 300mg twice a day, Thursday I move up to 300mg three times a day. I have not noticed any improvement in the pain but I’m sleeping better. But Fibromyalgia? Best wishes to all!
February 9, 2008 at 2:08 pm
I think Gene usually talks about Neurotnin in the thousands, maybe even 3600? Try PM ing him.
By the way, I LOVE the name you chose, Smiley! Have a great weekend.
One more thing, what made you think fibromyalgia? I was wondering if I have that, so many things overlap each other and sometimes the internet makes me think I have everything there is. While the internet can be a blessing, it is a curse as well.
Dawn Kevies mom
AnonymousFebruary 9, 2008 at 3:58 pm
May I add a word of caution? You are dealing with the body’s communication system. The long term residuals of GBS/CIDP are not well recognized wherefore we are given lots of different diagnosis along with it. I, too, had fibromyalgia (inflammation of the fibers)- or so was told. Hind sight says it was “simply” the GBS. If you do a search on carpal tunnel syndrome, you’ll see that many here were diagnosed with it and had the surgery, much to their regret. In others who didn’t choose surgery it eventually improved on it’s own (as did mine).
My [U]personal belief[/U] is that the docs, as do we, want an answer for every symptom hence so many added diagnosis’. I’m not saying that we can’t have these other disease processes too but I recommend caution.
AnonymousFebruary 9, 2008 at 4:51 pm
I had GBS in Jan 2001 and by Mar 2002 I was walking without walker or crutches. Then in 2004 I started feeling tired all the time and I was diagnosed with Chronic Fatigue but that went on until my doc finally said I had Fibromyalgia in Sept 2006. Then I had surgery in mar 2007 and within two weeks was walking with crutches with foot drop and loss of sensation and weakness and pain and went too a manual wheelchair and have continued to get worse even though my first neuro and my rehab doctor both diagnosed CIDP I have yet to get anything but pain meds and one week of solumedrol finally in december. The fibro causes alot of the same problems as GBS and CIDP but there is a slight difference and you can also have what my doc calls fibromyalgia fog which is when I have days or weeks of confusion and memory problems which of course do not help with the fentanyl patch and lorecet I am on for pain. My doc did try me on some things earlier with the fibro but they didn’t help much except sleep which worked up until the CIDP has gotten so much worse that it doesn’t let me sleep but a few minutes every couple of hours and that is day and night. They do overlap but there are some differences. My mom and one sister have fibro but their pain is not as bad as mine is with the CIDP on top of Fibro. Who knows maybe I am just wierd and I have something they haven’t figured out yet because each doc wants to make their own diagnosis and cost me more and more even though it is through the same hospital system. Hope you feel better soon. Good luck to you.
AnonymousFebruary 9, 2008 at 6:39 pm
Hi and thanks!
Someone suggested fibromyalgia to me, that’s why I put it on the forum to see if anyone else had it suggested to them. I’ve talked to gene about neurotin, that’s how I came to be on it. I’m still on the “starter” dose working my way up. I agree that the internet is a blessing and a curse. I love this forum, I’ve learned much and feel tons better with kindred spirits, no one but you guys know what I mean when I say my whole body is “humming” but some of what I read here scares me to death 😮 I hope everyone is having an enjoyable weekend! Best Wishes to all.
AnonymousFebruary 9, 2008 at 7:13 pm
I ahve Fibro and Sjogrens and find the pain different from the cidp. my fibro pain is deep in the muscles and if i am touched or poked or my cat jumps on my lap it increases the pain.
I have 18 of the 18 trigger points to dx fibro. it might be helpful to look it on the net and see if you have any of the trigger points.
Fibro and Sjogrens make me very tired.
i have found since being on Arava 20 mg it has helped both the Sjogrens and Fibro.
i find the pain with cidp to be like electric shocks that increase in intensity and the 24/7 numbnss, tingling, pain, pins/needles, electric shocks difficult to deal with.
i find that cidp makes me exhausted to the point of having to be in bed on some days.
AnonymousFebruary 9, 2008 at 11:50 pm
Smiley, What makes your Dr think Fibro? There is more to fibro than just pain, as mentioned there are trigger points all over the body, you have to have a minimum of 18 out of 25 of these trigger points to be dx with it, along with over 6 months of pain. There is a difference between the 2 autoimmune syndromes. I have had fibro for over 18 years. Just like with gbs/cidp, there is no test for fibro or cure. Another way to look at fibro from a layman’s view, the muscle fibers are wavey when normal muscle fibers are smooth, this shortens the energy level and power that one gets out of the muscle. Check out the fms site, there is more detailed info, good info on it. Take care.
AnonymousFebruary 10, 2008 at 3:18 am
[QUOTE=angel2ndclass22699]Just like with gbs/cidp, there is no test for fibro or cure. [/QUOTE]
Hi Cheryl — this comment made me blink, because there are very defined tests and clinical diagnosis guidelines for CIDP. Slow/inhibited nerve conductivity is a main one, and the lack of demylenation can rule out CIDP from a group of other possible diseases during the diagnosis stage. CIDP and GBS are very different from fibromyalgia that way, and also in that the majority of people respond to specific treatment protocols.
AnonymousFebruary 10, 2008 at 10:46 am
there is no defined test for gbs or cidp because of the fact that about i believe it is 25-35% the spinal tap does not show the protien level and there are a small percentage have normal emg’s so then it is a clinical diagnosis that can overlap with several other conditions including fibromyalgia. foot drop does not happen nor paralysis with fibro and you must have 11 out of 18 trigger points to be possibly diagnosed with it also it is clinical diagnosis. so basically these particular people are down to treatments that help to diagnose possibly. of course it is trial and error treatment. I have 14 of 18 trigger points for fibro my mother has 16 of 18 and my sister has 18 of 18. although they were diagnosed sooner than I was. none of us are on the same meds for the fibro either.
AnonymousFebruary 10, 2008 at 8:29 pm
Jody — Fibro is a diagnosis of exclusion. It is only diagnosed when everything else is ruled out.
CIDP/GBS are [B]not [/B]the same and I’m flummoxed as to why people would think they are. There are several tests — NCV study, nerve biopsy, reflex response tests, elevated proteins in cerebral spinal fluid. Demylenation is a hallmark of CIDP/GBS. Of course not every person has the same results on every tests (I myself did not have elevated proteins in spinal fluid but my NCV results left no doubt). But there is a clear, defined diagnostic protocol and these are not diseases that are disagnosed because everything else has been ruled out.
I think it’s detrimental and dangerous misinformation to put CIDP/GBS in the same category as a syndrome with no proven treatment protocols.
The recent case of the Minnesota pork plant workers illustrates this perfectly. They were initially diagnosed with CIDP, but that diagnosis was changed when none of them showed slowed nerve conduction on the NCV studies. Fibro is only diagnosed when all other potential causes have been ruled out.
AnonymousFebruary 11, 2008 at 6:47 pm
there are several people that the emg/ncv and spinal tap are normal but still after ruling out everything else that it could possibly be do have CIDP. The fact that the pain you have with fibro and CIDP are both debilitating to the person who has it and the pain can be all over as the exhaustion and fatigue in both that is the similarity yet when I explain to people what CIDP is I explain it similar to MS but it is peripheral nerves not central and that helps. Many of my friends knew I had been diagnosed with fibro and looked it up and when they found out I had CIDP they looked it up and their comparison of the two were the pain and the fatigue which is true from either disease. If you have 11 of the 18 trigger points you are diagnosed with Fibro so there are things to test for that as well as well as different medications that help but no cure as with CIDP. So yes there are similarities. Neither are fun to ave and are very hard on your body. I’ll tell you this much taking teenage boys and husband to Orlando for a week about killed me and I missed half because of the fibro because of the exhaustion. lol You need sleep for both when you are tired which is alot of the time for me but in some ways there are alot of similarities between the two including one drug they just approved for fibro but some doc had tried it before and that is Lyrica. They gave it to me for both the CIDP and Fibro but unfortunately it made me sick and I cannot take it.
AnonymousFebruary 11, 2008 at 8:23 pm
Hi Jodi — Fibro really sounds awful. I have to tell you, though, one more thing that makes it different from CIDP. Not everyone with CIDP has pain — I’m one of those lucky ones. I’ve had extreme demylienation, muscle wasting, loss of mobility, areflexia, the whole works, but I’ve never really had pain.
It seems the only real similarity is the symptom of fatigue, which is present in most autoimmune diseases. So I do think fibro is awful, but I really don’t think it’s comparable in mechanism or treatment to CIDP. In CIDP/GBS, it’s very clear what is causing the problem — demylienation of the nerves. In fibromyalgia, it seems to still be a total mystery what is creating the syndrome. True, there is no curre for either but in CIDP/GBS there are proven treatments like IVIG that stop the myelin attack. In fibro, treatment is aimed at the symptoms, not the cause.
I was prescribed Lyrica at one point for muscle cramps when my muscles were at their worst and it made me sick as a dog, so I know what you’re talking about!
AnonymousFebruary 12, 2008 at 5:55 pm
My mom only has the burning pain in her feet my sister when she takes her meds and has no pain at that time it goes through a cycle kind of like alot of people with CIDP that when they have had the IVIG or whatever are fine for awhile but need to go through the the treatment to get back to your own normal again the other meds are for symptoms also. Both are autoimmune diseases and both uncureable, my sister most of the time does not have pain just fatigue really exhausted all of the time and the last I talked to her she said her pain did not come back this time but the fatigue did. It is not always pain with fibro because I know others that have even all 18 trigger points but do not have pain but have the fatigue and sometimes weakness. Numbing and tingling that starts out in their feet and can move up. I know there are some specific differences but there are many similarities along with the fact that not everyone has the same symptoms and sometimes they are both very hard to get dx. Symptoms are different for everyone for both diseases and different medications work for different people in different combinations and we are all hoping for a cure. There is even a subset of people like me that have both I have to find the article again but it was the Oxford Rheumatology Dept article that said that this subset valued from the IVIG treatments for both the CIDP and the Fibro on a regular treatment schedule but there is still more research to do but it looks promising. The only thing they are not sure of is which came first the Fibro or the CIDP and since I had GBS in 2001 I may have already had the CIDP which is what caused my fatigue before the fibro was diagnosed since I didnt have the trigger points to prove fibro they told me chronic fatigue for two years. I really am not trying to argue but there are alot more similarities than you think between the two and actually several docs have said that the fatigue and muscle issue with fibro is similar to MS and MS is similar to CIDP except different nerves are affected. It is complicated but yet so much in common.
AnonymousFebruary 12, 2008 at 6:53 pm
Actually, if you check out fibro sites, for instance fms, it will describe in detail what fibro is and all 25 trigger points. Fibro=fibers, myalgia=muscle pain-which is always present in fibromyalgia. If there is no pain, it is chronic fatigue syndrome, which is different than fibromyalgia. Lyrica is paying for that commercial-the medication is used for pain-nerve pain mainly. Fibromyalgia isn’t caused by nerve pain, it is painful due to the fact that the muscle fibers are wavey and not smooth, and don’t get the proper amount of o2 like smooth muscle fibers get and need-equals pain. There are no test groups available to back up the lyrica statement. If this were true, I would not have a fibromyalgia flare up, with severe pain, because I’m on lyrica’s sister medication-neurontin. The pain of fibromyalgia is different from the pain of gbs/cidp. You can also find this information on the arthritis websites.
The only real likeness between these syndromes is they are autoimmune related, otherwise they are syndromes, in and of themselves. Ivig is never used for fibromyalgia, although pred is used for both cidp and fibromyalgia. There are no tests for fibro, one can only rule other causes out and you are left with the 18 or more out of 25 trigger points and constant problem with pain for more than 6 months straight. Fibromyalgia does go into remission. And it can flare up with stress, weather, etc. Exercise is the best treatment for fibro, although it may be very painful to do. High protein foods is also a good treatment for fibro.
One thing I found out about fibro is it can go into total remission while one is pregnant. For unknown reasons.
AnonymousFebruary 12, 2008 at 8:25 pm
That note about fibromyalgia and pregnancy is so interesting, because CIDP is known to worsen in a good number of cases with pregnancy. It’s so odd that autoimmune diseases all manifest so differently — like why does IVIG work for CIDP but not MS? I hope one day we’ll know the secrets!
AnonymousFebruary 13, 2008 at 2:02 am
I thought it was heaven for 9 months and 10 months. I was high risk and in the hospital about everyother week or so with hyperemesis and severe dehydration the entire time for both pregnancies, but it was well worth it to me. I have 2 beautiful and mostly healthy kids. I wouldn’t have changed a thing if it were up to me. I wish the autoimmune issues weren’t in the family.
It was shortly after my 2nd pregnancy that my tingley feet, numb lower legs started. At that time we thought the neurological reaction that I had had to thorazine was to blame. I guess its obvious that making a dx is pretty hard in my case. Tooo many odd things have happened in my past.
AnonymousFebruary 13, 2008 at 9:25 am
actually pain is not always present in fibro except when drs press on trigger points to chesk for this. My sister and mother also have this and as I said earlier the news from Oxford Rheumatology has seen patients that have both and have a small percentage of people that have benefited from IVIG on both ends of their diseases. Lyrica, Cymbalta, Prednisone, are just a few of the similar meds that both diseases have. Burning, numbing, tingling in extremities especially the the feet and legs are similar to the types of pain some people have with CIDP. They believed for a long time that it was muscle related (fibro) but are now looking at the point that it is affecting nerves also and mostly periferal not central. Remember not long ago people with fibro were considered to be mentally ill not physically and they are finding more info everyday that proves that there are several things involved with Fibro. And many of these are similar to CIDP I know that because I have both and I have been able to see some of these similarties and also the differences and sometimes I cannot tell which is trying to push to the forefront. I have read up on several web sites and there are many different claims about fibro. But I go by what I see and feel myself, through my family who has it and the 4 support groups that I speak at for fibro that have several people with different symptoms but all have fibro and we get new research all the time from head researchers about this and they have found in alot of test subjects that there is nerve involvement not necessarily all muscle and that they are working on trying some new treatments that other autoimmune diseases use and some have helped and some have not. Ongoing research for all autoimmune diseases will eventually hopefully help us all but until then there is trial and error. I am hoping that when and if I get my IVIG that I will be in the small percentage that helps both of my problems and not just one except I have found that I am not that lucky. Also you were lucky feeling better during pregnancy because my sister was alot worse with hers but felt better after about two weeks after delivery. Some of the women in my groups have said both ways they have felt great and they have felt awful so again everyone is different in how these diseases present and what works and what does not.
AnonymousFebruary 15, 2008 at 9:24 pm
It is 11 out of 18 tender points that people call trigger points the actual trigger points show about 24-26 but what they go by is the 11 out of 18 by all the information I have recieved from many different sources outside of the internet which can be more confusing. I have 11 out of 18 and one in my family has 18 out of 18 and the other has another amount out of 18 that I cannot remember right now. The wonderful fibro fog has my brain foggy again tonight. I haven’t seen anything about 25 in any info or sites I have looked at yet but I am still looking.
February 16, 2008 at 12:46 am
I think I have fibromyalgia. I am always in pain. Neck, shoulders, jaw, teeth, back, hip, knees. I’m fat too! Probably doesn’t help. I’m tired and sad too. I’m just so tired achey and sick of keeping it together. I’malmost out of vicodin, I have some soma left and even resorted to my friends offer of her darvocet that makes her puke. Two of them don’t even put a dent in the pain. The doc reccommended lyrica, but that will make me fatter. I’m so tired.
AnonymousFebruary 16, 2008 at 2:30 pm
it could be just the pressure you are under with an ill child I remember having some of those feelings way back when Kendal was at his worst but there is a possibility of fibro but you would need to see your doc and make sure he knows all the symptoms you have and how long they have been going on and straight out ask about fibro as a possibility. They may say depression which would be situational because of what you are going through with your son but only the doc can tell you for sure. Good luck and my prayers are with you and Kevin.
AnonymousFebruary 16, 2008 at 9:54 pm
Before you jump to any conclusions, can try some relaxation techniques like exercise, massage or meditation first? You have a huge job and it’s no surprise that the stress of that might manifest itself as pain. I think some real, scheduled relaxation and time for yourself would work wonders.
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