fibromyalgia and chronic fatigue

Bunny,

I chuckled when your post mentioned fibromyalgia because when I first came down with GBS, and my doctors were clueless about what my problem was, I was referred to a rheumatologist (I know, my spelling is awful!). The rheumatologist immediately diagnosed me with fibromyalgia.

She completely ignored the fact that I was already literally too weak to step up onto the single step to get myself onto the exam table by myself, and couldn’t speak above a whisper.:eek:

Needless to say, the dx was proven to be incorrect. I think this is often used as a kind of “wastebasket” diagnosis, when they can’t pinpoint the cause of the symptoms. Just my opinion, but your problems sound like GBS classic residuals to me.

Best wishes,

Suzanne

Bunny,

Suzy Q and I have had a similar experience. My rheumatologist also said that I displayed symptoms of fibromyalgia, but lets face it, those symptoms and chronic fatigue present very similar, and in some cases identical symptoms. I know that there have been others on the forums that have been diagnosed with fibro and chronic fatigue. I just wonder if it is ‘easier’ for some docs to say that instead of dealing with the unknown of post GBS.

bunny, i have fibro, have had it for over 15yrs. it is different then the residuals that i have. fibro is in the muscle, not the nerves, it makes smooth muscle fibers look like lasagna noodles-wavey. the pain is just about the same type-achey, hard to control. in fibro there are 25 points over the body that are quite painful when pressed. a good number of them are on the back. if you don’t have at least 18 of these points then you don’t have fibro. like gbs/cidp there are no tests for fibro and no cure, it is a syndrome also. fatigue is a symptom in fibro also, and there are soo many more, similar to gbs, but it does feel different. fibro occurs in more women then men, for unknown reasons, and its a very widespread problem. a dx of fibro isn’t justified until the person has had the symptoms for at least 6 mos straight, and after all other possible dxs have been ruled out. and like gbs people, fibro people are told its in their head, and are put on antidepressants most of the time.:( and its hard to get pain relief perscribed to you without jumping thru all the loops and then some. i do have to admit that by going through all the trouble with fibro has made me a bit more of a pain to treat now that i have this gbs stuff, i ask alot more questions and don’t like to take i don’t know as an answer.:D

Hi Ladies,

With my 10 years experience, I used to have a diagnose of Chronic Fatigue Syndrome but now we all know this is just residuals. And I was “tested” for fibromy. and the pressure points did not all hurt. So, I guess I am agreeing with you that they all feel about the same. I like that quote on ‘the best of the worst compared to MS’. Yes, it could be worse. Hanging in there…

Hi Bunny, This is so interesting because I was diagnosed with FMS 20 years ago. It took over a year to get the right diagnosis. I had to be seen by a Rhunmatologist(sp), a neurologist, a psycologist,a GP etc. They did all the cat scans, blood work and I think the clincher was the 25 pressure points. I would go right to the floor on some of them. I have been on anti-inflamitory meds forever. Do they help? Who knows anymore.
I do see some likeness to GBS. The FMS pain I have reacts for the most when our barometer changes. And we have lots of changes. Also stress. It feels like someone is inside your body squessing your muscles with a vise.
GBS is very different for me. My insides always feel like a tuning fork–like they are always vibrating. And shaking. I drop everything. Its very uncomfortable and gets much worse as the day goes on. And by bedtime I feel like my head is going to explode through my ears. I really fight with myself to rest, I know it is so important, but I always see something I should be doing. I hope some of this makes sense. Diane

I met a woman at the library book sale who told me that she had Fibromyalgia for years. She discovered quite accidentally that when she cut chicken out of her diet, it cured her. She was using the foods for blood type B. I am wondering if this tip will help any other sufferers out there. Many people with blood type B can eat chicken and have no symptoms. But if this can save one person from suffering, it was worth putting it out there. The main caution for B blood types is to stay away from chicken.

Chicken and blood types equal fibromyalgia? I have B neg. blood and MS–absolutely no relationship. There are theories about fibromyalgia being precipitated by subclinical infections such as mycoplasm, campylobacter. So perhaps uncooked chicken which can harbor campylobacter which could lead to a subclinical infection may result in a myriad of symptoms. There is also research looking at GBS and CIDP and infections from things like campylobacter being a precipitant. But absolutely nothing in the literature about blood types and restricting certain foods.
Laurel

So many diseases have overlapping symptoms that it all becomes a gray area in diagnosis. After having many inept MD’s tell me my problem was all in my head, I did finally get the diagnosis of Fibro. Dr then told me all he could do was give me muscle relaxants and pain pills. Pain pills do not even begin to touch the pain. Antidepressents made me depressed. Finally I got out of main stream medicine and moved into researching alternative medicine. I discovered that many CFS and FMS individuals, according to alternative Drs (many which are actual MD’s) have determined that there is a thyroid connection those “diseases”, although their thyroid is considered to be “normal” by mainstream Drs. I began to take their recommendations and found my pain, tingling, etc either ceased or decreased.
Interestingly my neuro says that many CIDP/GBS individuals have thyroid issues. I suspect that my untreated thyroid ultimately led to my CIDP. I am even more convinced as recently I discovered something that was missing from my diet, can when too low, lead to thin myelin.

Of course when discussing FMS and CFS this will not apply to everyone as some Drs misdiagnose those (may actually be lymes or something else) and/or just lump in normals to appease them due to normal ache and pains. That is the problem of using just symptoms vs a disease that has definate bloodwork…too many misdiagnosed people.

Laurel,
Have you noticed that you have used the word ABSOLUTELY twice in your post? Absolutely no relationship and absolutely no literature. From the books I have read, there is a relationship between B blood types and MS. B’s tend to clear nitric oxide rapidly, through the B gene allele’s on enzymatic production of NO. When out of balance, it creates an overly emotional reaction to stressful situations….which can lead to MS, Chronic fatigue syndrome, etc. B’s also have a tendency to overproduce cortisol in response to stress.
Since I had a close friend who died of MS, I have talked to many people who have it. And I have noticed the anger and overly emotional reactions to stress. I wish I had read the literature about blood types so perhaps my friend would still be alive.
I am not asking you to believe this….but please don’t say there is absolutely no literature on the relationship. There is. It might help someone else. The great thing about this website is our sharing of ideas. And sometimes the medical community does not accept answers that are so simple. Like the discovery by Dr. Barry Marshall that ulcers were caused by Helicobacter pylori. He had to drink the bacteria-infested beef broth and get the symptoms and still the other doctors had trouble accepting it.
Dr. Gerson had great success with MS. Another friend was on it and did beautifully. He died but they still have a clinic run by , I think, his daughter. The clinic also treats cancer. Most people don’t go there until they have exhausted conventional chemotherapy. By then their liver is in pretty bad shape. If you go there without having lots of chemo in you, there is a high success rate.

Hi Carolyn,
Have you ever clicked post quick reply and then thought “sheesh I have put my foot into and sounded very rude?” That was me after clicking. No offense meant, and my two absolutely’s were too strong.

I have had many discussions with my neurologist over the past 25 years about exacerbators and causes. He said the only blood type issue he saw was patients with type B blood who seemed to develop neutralizing antibodies to Betaseron in higher numbers. I was one of those. I am interested in bacteria as it relates to people with autoimmine diseases and motor neuron diseases. I know that many of us with MS have had pulse steroids over the years, and we know that people with lowered immunity are more suspectible to bacteria such as listeria, campylobacter etc. I believe that there were at least two deaths from immuno compromised individuals during our listeria outbreak (deli meat from Maple Leaf Foods). So I firmly believe that people with autoimmune diseases like CIDP who are on immunosuppressants need to stay away from deli meats and under cooked chicken. I have been closely following the Calgary and Louisana trials of doxycycline and MS which have had positive results. I would suspect a connection lies in the existence of subclinical infections that have been undetected.

I have worked with psychiatrists before I retired who have done research with stress and cortisol levels. It is very interesting how the cortisol can impose systemic damage. And I have been very interested in helicobacter and it’s response to antibiotics. I listened to Dr. Gabe Mirkin for years talking about his success with antibiotics and rheumatoid arthritis and diseases like FM. Anyway enough of a ramble.

I didn’t mean to repond so curtly and distress you.
Laurel

Laurel,
I was more worried about you and the readers than myself. I feel blessed to not be on any pharmaceuticals. With eating according to my O blood type and taking supplements for any problem I encounter, I am keeping fairly healthy…considering I had GBS twice.
When I read your post, I had a flashback of volunteer ushering at the Tampa Bay Perfroming Arts Center. I had been teaching a health lesson that day on stress and we were discussing MS. That night a woman entering another door was very upset because there were double tickets for her seat. I could hear the usher calming her saying that he would let her stand inside and watch the show while he checked the other tickets. It was quite resonable but she went on and on. I thought Wow….she is not handling this well. Then I heard her say,” I have MS.” I was not surprised. Even my close friend who had passed from MS carried a silent anger from having to marry a man she did not love. Getting divorced after many years, she then carried anger over Lulu, who he was dating. It was her overreaction to stress. B blood type…..although we are all harmed by stress, B’s have a more negative reaction in their bodies to the it.
I think the worst sin we can commit is to be able to help others and not doing it. If you get a chance to check out the book Eat Right 4 Your Type, check out the chapter on your bloodtype. See if the book makes sense to you. When I first did that, the book knew me. But now I knew why my eyes would not stop watering if I did not eat red meat for a week or two. Sadly doctors do not know as much as they need to. OUR DAILY MEDS is another great book about the pharmaceutical companies. The medical profession is to first Do NO HARM……..and I don’t think they are living up to that. We need to share what works. And this works.

Hi Carolyn,
I think I have seen Eat Right 4 Your Type at a local book store so I will try to get a copy. We are trying to eat organic which is challenge, but rather interesting in the search of all things organic (price wise and availability). I really like the concept of trying to buy food that is produced within 100 miles of where we live.
Hubby and I are lucky to have a little farm so there is nothing better than grooming a horse to alleviate stress. Today we had three eagles circling and landing in our trees so we put our feet up and watched them in between the manure scooping. Today was very Spring like which was welcome as the winter was a cold one. I am an avid gardener so I am keen to start when the ground thaws–I’ve got great plans for sweet peas and nastursiums this year. I see that you live in Pennsylvania and Florida. So you must be in sunny Florida now. That sounds like a lovely way of living.
Laurel

Laurel,
The worst foods for “B’s” are : chicken, corn, buckwheat, lentils, peanuts, sesame seeds, and tomatoes. B’s have the weakest defense against the most common influenze viruses, but taking elderberry will ihibit their replication. Be careful of E. coli Your blood type is virtually defenseless against it. But the good news is that if you live a balanced life and eat according to your type, B’s tend to be more phsycially fit & mentally balanced than any other bloodtype.
Unfortunately I am stuck in a little coal mining town in PA because of the GBS. My close friends left when I got sick and I have not made one friend. It is a very unfriendly area. When I am better, I look forward to getting back to warm and wonderful Tampa. I had post traumatic stress syndrome from my mom’s death and then from GBS.
You are fortunate to be living in Vancouver. I have seen pictures and it is gorgeous. You sound like you have the stress under control.

Hi Carolyn,
I hope that you get back to Tampa soon. When I was a child I lived on a dairy farm in Pennsylvania for a brief period, and it was very cold in the winter so I don’t envy you being stuck there. Yes Vancouver is beautiful, but it has its minuses too i.e. lengthy periods of rain as in months of rain. But overall it is a good place to live.
Thanks for the info. on the foods. I find what you have learned to be interesting. I hope that you are doing okay as you mention that you are stuck because of the GBS. Is the GBS causing health issues now? Small towns often can be harder to make friends in than bigger cities. More cliques I think.
Take care.
Laurel

Thanks, Laurel, for your warm wishes of my returning to Tampa. I grew up in this small. coal-minig town and taught here for 15 years. But now it is like I am invisible. I ran into a former teacher at the library and she reminded me how much of a friend I was when she first moved to this town. Her boyfriend had just broken up with her and I showed up at her apartment that night with ice cream and asked if she needed to talk. I also took her out to clubs when I would go. But when I needed her to take one minute to roll my garbage can back from the street once a week, she suggested I find a kid in the neighborhood to do it. I reminded her that I had lived away for 22 years and didn’t know any kids. Amazing.
I have such fear of the GBS returning from the stress of moving. My right foot gets numb when I get under stress. I am going to try to take a trip this Spring. I have no friends up here which is not great for a PTSD sufferer. It means I have no soft place to fall if something happens.
If you get a chance, Google Dr. Gerson. He was from Germany, I think, and did great work with MS over 25 years ago. He is now dead but his daughter has a clinic in Mexico that follows his techniques. The clinic was in CAlifornia but moved – probably from the AMA not wanting anything simple that works! That would take away from their profits. I read about how the clinic treats cancer and it stops the patient from eating any red meat – which is the right way an A blood type should eat. Cancer hits A’s more than any other bloodtype. And meat is poison for them. It doesn’t mean that A”s will get cancer, it just means that they are more likely if they eat red meat and other foods that are bad for them.A’s also are the most compliant patients – which also makes sense with the bloodtypes because they basically should be vegetarians and are of a more gentle nature.
So how come I have been able to research this and doctors don’t??? It angers me for the doctors and saddens me for their patients.

Ok, so what is in store for the o’s? I can’t remember if I am pos or neg. But I du remember that I am a universal donor. Now I an too frightened to even check Kevies records to see what he is, I suppose I should, I am going to check my older son’s too.,
Dawn Kevies mom

[QUOTE=Carolyn]
So how come I have been able to research this and doctors don’t??? It angers me for the doctors and saddens me for their patients.[/QUOTE]

Yeah. Why is it that I have made so many improvements in my own health (with no imput from Dr’s) and even after Drs see the incredible improvements all they can say is …”placebo effect”. They are so “trained” in school as to what opinions they should hold…what ever happened to Drs that actually listened and who would work with your symptoms to try to treat you.
I am more convinced than ever that my CIDP is due being ignored by Dr’s (whose only offering was antidepressents) for so many years. It is probably too late to stop my cascade of events but I can at least inform my daughter and nieces as they grow older.

Kristin,
You are so right. I often wonder whether the medical profession attracts close-minded people or do they becomre that in med school. It takes a certain type to strive for all of the A’s to get into med school. I once took a Geog. course where the professor said to a girl in class that she was the type that would drop his course at the end if she thought she might get lower than an A. SHe agreed. I was amazed that someone would spend all of those hours sitting in class and then choose to take it over just to mke sure she got an A not a B. I didn’t know that people like that existed. This was a night course and I could think of better things to be doing than taking it over again!!
It is not too late to stop your cascade of events. Think of your body like a car – if it is sputtering, put in better gas. It won’t make any difference how old the car is.. It won’t hurt to try it for a week or two. See if there is any difference. I assure you that there will be. I find out what I am lacking and then supplement. I watch what my nails and hair are doing. I do reflexology on my hands and feet and any pain tells me which organ is not working.
If you get a chance, do read Our Daily Meds – usually the library can get it for you. After that, you will try to stay away from any pharmaceuticals. The drug companies do not wnat to cure diseases. They get their profits from chronic conditions. If there is a Hell, I think it is filled with them – deservedly.

Dawn,
Please do not fear knowing what the blood types influence. It just gives you a heads up. Eating the correct foods will help you avert these conditions. O’s are susceptible to bipolar, schizophrenia, ulcers, and IBD – yet I do not have any of these. But we also have an affinity to autoimmune (especially the thyroid) which I am now working on. We have an increased sensitivity to pollens. So I take enough vitamin C and took all of my hayfever away. You don’t need to know whether you are positive or negative. There is a test that you can send away for to tell whehter you are a secretor or nonsecretor. The book explains what this means. I sent away saliva and got the test.
The worst foods for O’s are wheat, corn, peanuts, potatoes, kidney and navy beans, and lentils. The best food is red meat. BUT you should never eat a protein with a carbohydrate because it keeps it from getting digested. So a steak and a salad is fine, but if you want to eat a carb, you need to eat that at another meal. People say they can’t do that, but once you get used to it, it is not a big deal. And I do not drink anything with a meal. It waters down your digestive juices. Makes sense, doesn’t it? Why don’t doctors tell us this? Because it is easier to give people pills and they have side effects. Plus there is a monetary reward (0r trips or dinners) for the drugs they prescribe. Plus the doctors do not have time to explain this in their short appointments.
I have found that most health records do not contain the blood type. It is the most important test you can get done in my opinion. I often wondered why I would get a particluar cold and my mom would not get it. We were different blood types and our bodies were susceptible to different germs. It makes so much sense. It answers the questions that doctors couldn’t. I did have one wholistic MD in Shillington that got me through my first bout with GBS. The medical community shunned him yet his patients worshipped him. He would be in his office until midnight. Suzanne Summers writes and talks about him. Unfortunately I talked with one of his patients recently and he is not the same. I think the AMA got to him.

Hi everyone,

I haven’t posted for ages but came back to the website hoping for some guidance. Then i saw this thread and thought wow that is close to what I am looking into.

I had GBS January 2004 and now have residual like pain in legs, nausea and severe fatigue. Recently (December) i had a brain scan which showed reduced blood flow into the frontal lobe of my brain and a gastric emptying study that showed slowed emptying of my stomach. The specialist says that this “Medically diagnoses” chronic fatigue. I am currently in a battle with my doctors as they are trying to get me to slow down as they say this will help me to recover. I don’t suffer from depression but have been sent to a counsellor to try to accept the new diagnosis and try to get myself to slow down as i am burning myself out.

My Question to you guys is do you think my thinking below is correct?:
1. I think that slowing down and resting too much will make me worse as the muscles will have to work harder due to the nerve damage from the GBS. Causing more fatigue!

2. I need to strengthen the muscle groups in my legs to lesson the fatigue. Not a strenuous program obviously.

3. I don’t think i have Chronic Fatigue just GBS residuals.

I am having a battle accepting this latest diagnosis as i feel the doctors are undereducated on GBS. I don’t know of anyone else personally that has had GBS to discuss this with either. The nearest support group to me is about 900 miles away. I know that I still have residuals but don’t want to have it misdiagnosed as CFS. I could be wrong but there is little knowledge from my doctors about the illness. I am the only one my GP has seen ever with GBS.

Need some advice guys. Hope you can help

Kind Regards,
Debbie

Debbie, I too just found this tread and read all the previous posts. Why are we paying researchers so much when the people right here are doing all the leg work. Plenty of interesting suggestions in the previous posts on this thread.

I was diagnosed with GBS in Oct. 04. I started physical therapy once I was out of the hospital and back home. Unfortunately the therapists had very little knowledge of GBS. I have been very active my whole life and was teaching Physical Edu. at the time. So I was ready for the old “no pain, no gain” theory to exercise. It doesn’t work when you’ve had GBS! The days I pushed through exhaustion set me back weeks. It took a long time for both myself and therapists to learn that ‘slow wins the race.’ That was very hard to accept, but looking back I know it was the best policy.

Last fall I started a series of test to determine if the issues I was dealing with was GBS residuals or something else. Long story, short–I had brain surgery to slow the progression of another unusual disease, Chiari Malformation. My GBS was very angry about such an invasive procedure and I am still getting physical therapy 2 times a week. This time the therapists are well informed and constantly doing more research on my unlucky combination. The surgery was in Oct. of 08. It has taken me a long time to accept that the minimally strenuous exercises are the best path to take.

My suggestion, keep a journal on daily activities. You will soon be able to look back and see what is progress and what sets you back. Listen to your body.
If I can help answer any questions in anyway I’d be glad to try.
Don’t over do. Good luck.

Hi Debbie, If you do have cfs, what would it change? Its not like its a death sentence. Its quite the opposite. In answer to your questions, rest is the best thing you can do for your nerves to recover. After any type of movement your nerves may need extended time to recover or re-energize. Slowed stomach emptying is not unheard of as a residual of gbs-stomach is muscle-muscle gets the command from the nerves. I wouldn’t think the worst of your new dx, it just may be a new residual of your gbs as well. Do research on cfs or even fibromyalgia, its not all that bad as compared to what you went through with gbs. Its really quite easy to live with as compared to gbs. Exercise is good for both gbs and cfs, it is best to do easy stretching moves as opposed to weight training moves. Toning type vs muscle building. Wouldn’t want to do more damage to the nerves. Everyone has their own limits to live with. If you over do it while biking 2 miles one day, then try to cut it in half and see if you can recover easily after 1 mile-you found your limit if you recover quickly at 1 mile. You can always challenge your limit to see what you can do on good days by adding to your limit. Try to have a well rounded day, little exercise here, and alittle while doing housework there, making dinner on top of that and so on. If you can have a well rounded day and still be able to get up and do it tomorrow, then you have a good base to build on.
Just curious are you on any meds? for anything.

Thanks Jaydee and Angel,

Angel I am taking meds. I take Topamax for pain, domperidone for stomach emptying and then magnesium, zinc, sodium (vitamins).
I think my frustration lays in that my doctor thinks that me not accepting the diagnosis is not helping my slowing down. I know i am still not well but i guess i may never be. My doc has sent me to counselling which is good as I did not realise what i had bottled up over the 5 years with the GBS but I dont want to take the wrong path for recovery. I have little understanding of CFS so the counsellor is going to get some up to date information for me. Maybe this will help me decide if I fit into this category. I know it is not a death sentence to have CFS but I feel that if what i have is residuals from the GBS then I should be educating my doctors on this so they can learn more. I have already educated them on this illness as they had not seen it before in person. Anyway at the moment I am a little confused as you may gather from the sound of my post. I am not sure really what answers I am looking for but when i find them I will be content in myself i am sure.

Thanks for your replies
Debbie

Hi everybody. I just saw this post. The few studies done on the long term effects of GBS all show a high incidence of fatigue and muscle pain, even in people who had a mild attack. So few doctors understand GBS that they often diagnose other diseases like CFS or fibromyalgia. And there is another question; does having GBS make one more likely to develop CFS and fibromyalgia? I don’t know the answer to these questions but I do know that a vast majority of us suffer from fatigue and muscle pain. Interesting.