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FM and Guillain Barre
20 Replies
Nick19 - July 13

Could this be FM?

Hi all,

I’ve been through a brutal time the past two months or so. I’m normally quite healthy, 30 years old, male, active, I eat well and take plenty of supplements. But I’ve had a ton of symptoms recently and now I’m worried I could have FM. Here is a line-by-line:

- in mid-May I started having neurological problems—twitching, spasms, loss of strength and coordination, difficulty swallowing. This got progressively worse over a couple of weeks. I wound up seeing a neurologist who thinks it may have been a mild case of Guillain barre syndrome. This gradually got better and about four weeks after the initial onset of symptoms I was feeling much better.

- in mid-June, just as I was getting over the possible GBS, I came down with flu-like symptoms—nausea, loss of appetite, severe muscle fatigue, bloated/burning pain in my abdomen, mouth cankers, coated tongue, sensitivity to light. I went back to my GP who thinks it’s all stress and I have nothing to worry about (grr!).

- the flu-like symptoms were bad for about two weeks but gradually improved. But now I’m left with an inability to fall asleep—not due to anxiety, I literally can’t *fall* asleep. I start to drift off, then whatever normal mechanism carries your brain off to sleep doesn’t click in and I’m left awake. I can attain very light modes of sleep, even lucid dreaming, but I can’t get into deep sleep. The only thing that lets me sleep through the light are seds (tried zopiclone and it worked, but this is not natural sleep and I don’t want to start a habit). I’ve started to have other cognitive problems as well, with memory and attention.

Also, the difficulty swallowing has come back. My muscles aren’t working properly—feeling very weak and fatigued. My joints are *extremely* stiff, in the morning I can barely move and everything is quite painful until I loosen up a bit. Finally, my vision has rapidly deteriorated.

As I said I’m normally quite active but all I can do now is *very* light yoga.

Note that this all began after a brief unprotectred sexual encounter in early May. I was tested for STDs at the ten day mark, all negative. Got HIV tested at 8 weeks, also negative. I’m worried I got some type of infection that’s not showing up and needs to be tested for specifically. I know that FM is thought to have an infectious cause.


I’m seeing my GP next week and I’m trying to get back to the neurologist. My question is, does this sounds like an known FM experience?

 

Jocelyn - July 14

Fibromyalgia is a catch all for pain that most doctors can't figure out why you have it. I've been diagnosed with FM and have found that, although I have it, there were other contributing factors. You need to see a specialist as soon as possible and push to have testing done. You didn't mention if your neurologist did any specific testing, if not he/she needs to in order to rule out anything else. Keep on fighting for your health. You are your best advocate. Make sure you are checked out from head to toe by a Rheumotolgist and neurologist. Good luck and keep us posted.

 

Nick19 - July 14

Thanks Jocelyn.

When I was having neuro. symptoms, I had a bunch of tests--blood/urine, CAT, MRI, and EMG. All were normal. Only visible sign was slowed reflexes. The neuro. symptoms were pretty mild to observe. But everything has just gone crazy since then, and I feel terrible.

I've got to say, I'm not in much pain at the moment, other than sore muscles. It's just that I have pretty much every other symptom of FM, and the timing with the other symptoms, and potential viral infection.

 

Jocelyn - July 15

Nick19,
I am glad to hear you are not in a lot of pain. Since the neuro did a lot of test when you symptoms were milder, it only makes sense for him/her to take another look since things have gone crazy right now. The viral infection can cause lots of unusual things to happen to ones immune system. However, since you have gotten worse, you need a re-check all over again. I had pretty much every Fibro symptom when I was first diagnosed, however, I have found other contributing factors that were causing the Fibro symptoms. The problem is, there are many things that are diagnosed as Fibro and vise/versa and there really is an additional problem, some times. My doctor in Boston can't believe how well I am doing since I last saw him when I couldn't walk. He wanted to know how I got better without taking anything but Advil. I went to a PT who was able to find out where the pain was being generated from and we worked on my hip for months.

Your symptoms seem to be more of the nuero symptoms than the muscle symptoms. Therefore, I would head for a second opinion from a different nuero. It never hurts to get a second opinion on anything. I've gone through several doctors until found the right ones to help me. They are out there, sometimes you find them by trial and error. When it comes to your health you can't give up. There are many autoimmune problems that can be attributed to your systems, which may or may not be FM. Sometimes it takes time for symptoms to progress in order to find the correct diagnosis. When symptoms are mild, you are less likely to find an answer. So...since things have gone crazy, go back and be re-assets again.

Please keep me posted on your progress. Don't sit on this, push the doctors to figure out what is making you ill.

 

January - July 15

Hi Nick. Jocelyn is right. FMS is a dumping ground diagnosis for "you hurt and we don't know why," and you need to demand a very thorough workup to see what is wrong. You might need to repeat tests, or research the "right" tests. Viral testing might require several different types of test at different times. Also, the laboratories often do not keep specimens at the proper temperature, or they botch the testing, so you get false negatives. Don't assume one test is correct.

FMS is a "syndrome," meaning it's a collection of symptoms - you may have some or all - but it's not a single "disease," per se. The drug companies are advertising it in a way that it seems so, but in my opinion, this is an attempt to sell Cymbalta and Lyrica, etc. Are you taking any drugs? Because often, weird symptoms are from drugs like the antidepressants prescribed for FMS - so you might want to check with a good PhD pharmacist, and go over all the drugs you are taking (ALL of them, OTC and supplements too) to check for interactions and side effects. Also, sometimes people are reacting to the dyes or fillers in generic drugs.

Fibromyalgia can be a misdiagnosis in certain cases; e.g., a person might have an autoimmune disease like M.S., or an infection like Lyme Disease (hard to diagnose and requires repeated and accurate testing), or some kind of hepatitis or herpes infection (there are 8 different strains of herpes virus, maybe more). You could also have triggered something like celiac disease (the severe form of gluten intolerance). Most doctors know very little about this. Check out the Celiac Sprue Foundation. You can have celiac without GI symptoms - something most doctors don't know. There is a blood test for it.

You should request a test for food allergies, including one for delayed food allergies while you are still eating your regular diet. LabCorp offers a test for over 90 food allergies. Celiac disease can cause all kinds of problems, including neurological, musculoskeletal pain, etc. My new rheumy tells me a lot of his patients do better on a gluten free diet. It worked wonders for me - but I figured it out from my research. Most doctors are completely ignorant about it. You can get an e-book online called Dangerous Grains that links gluten to a host of diseases, many of them linked with FMS. The gluten free diet cured my "fibro" muscle pain. I also got lidocaine injections into the big painful muscle knots and they, along with deep massage, broke up the knots. But I still have the exhaustion. Some of the symptoms of celiac disease match yours - canker sores, bloating, disturbed sleep, neurological problems, lowered immune system so you catch infections, very painful joints - and also depression, if you have that? In fact, some of the symptoms also match up with side effects of Cymbalta - you don't say if you are taking that.

A very good supplement to help with sleep is melatonin, sublingual works the best I believe. It is the hormone your brain makes for sleep. I now rely on it, and only occasionally take 3-5 mg of Ambien with it. Some people go to sleep with 3 mg. Melatonin I need 10-12 mg to get sleepy, and if I wake up at night, I take another 2.5 mg sublingual tablet. Read up on this, talk to your doctor or pharmacist before taking it. There are some sources that say it is risky because it's a hormone. Educate yourself and decide what you want to try. It's also good to keep a notebook of what your symptoms are, what you ate or what you did, and whatever supplements or treatments you tried. Over time your patterns will become clear and you will know what makes you feel better.

Best thing we can all do is educate ourselves. A couple good books are "Fibromyalgia for Dummies" and "Fatigued to Fantastic" by Dr. Jacob Teitelbaum who has FMS himself. You can google him - I believe he will consult with patients online. There are a number of fibromyalgia doctors online. Some feel that FMS is linked with Lyme Disease. Some will work with you on viral testing. Some believe FMS can be treated with magnesium. It's up to YOU to educate yourself and decide what matches up to your symptoms - many regular doctors just don't have time to carefully assess all your symptoms and diagnose you. It's easier if you do the research, print off what you think applies and take it with you to the doctor.

All of us have different complexes of the symptoms of FMS, most of us have a very hard time finding a sympathetic and knowledgeable doctor. I think we are frustrating because we require a lot of time up front to get a good diagnosis. Doctors are pressed for time. It's easier for them to hand you a prescription for an antidepressant. Some people find some relief with them, but a lot of people have a hard time with them - and they are highly addictive, have side effects, and are almost impossible to quit once you start. So before you start any drugs, read the forums and do your own research, avoiding the drug company sites. Two good sites to research drugs on are peoplespharmacy (dot) com and drugs (dot) com.

And let us know how are progressing. It sounds like are better than you were! Good luck to you.

 

Jocelyn - July 15

Nick,

I forgot to address the sleeping problem. Like January said above, she has found a system that works for her to help her sleep.

I also have a sleeping problem where I can fall asleep, but when I am in the falling asleep stage and at the relaxed stage, my brain would go from relaxed and falling asleep, to wide awake and jumping out of bed. I would do this about 3 times before I would fall asleep, then I would wake up repeatedly throughout the night. Finally I asked for some help. I did try Ambien, but had memory loss and that wasn't helpful because I am working full time, so this was not a good choice for me. Not everyone has this problem and it works wonderful on many people, as January stated above. I haven't tried the melatonin, which is a great idea and I will probably try that in the near future. I am on Klonapin 1 mg a day. I was on a lower dose but when my mother was dying I was increased to a higher does then brought down to 1 mg a day. After a while this drug doesn't really help you fall asleep, but what it does do for me, is it continues to stop me from jumping up when falling asleep. I fall asleep and sleep pretty well all night, but do still wake up a couple of times a night, and I do fall back to sleep within a reasonable amount of time. This is an addictive drug, so if one wants to come off of it, one would have to gradually decrease over a period of time. I don't expect I will be coming off of it at all. I have had problems with my nervous system since I was a child and I don't want that feeling again. My nerves are settled and I function well at work with no side effects that I know of. That is my way of coping with my sleep problem. Everyone is so different. You have to find what work for you.

What January stated above is so true...you need to be retested for everything.

My boss at work had some of your symptoms with the trouble swallowing and eye problems and he ended up with Myasthenia gravis another nueromuscular disease caused by autoimmune problems. He didn't know what was going on. However he is in full remission and has no signs of his disease. I am in no way even suggesting that you could possible have this disease, I am just using my boss as an example of how many different types of autoimmune syndromes there are. There are tons! Please make sure you see a neur that specializes in nuero muscular problems. Even though your nuero may specialize in them, not all doctors are equal in their knowledge of things. Try to go to a large hospital in your area, they see more unusual things than the smaller hospitals do.

 

Nick19 - July 15

Thanks January and Jocelyn,

I'm currently not on any medication. I had a couple zopiclone but they're gone now. I also had a few ativan but they don't do much for my insomnia.

I have used melatonin for some time now. Generally speaking it's great, but it doesn't work for whatever I've got going on at the moment. I tried 20 mg last night (along with over the counter Sleep-Eze, and 5HTP), to no avail.

Depression?... at the moment, yes. Though I think it's from the lack of sleep.

The neuro. I saw is at a really large, really good hospital. Hopefully I can see him again ASAP.

One thing that makes me a bit optimistic about everything (though maybe it shouldn't) is the fact that I don't have much muscle pain, per se (I'm just a bit sore from lack of sleep). Has anyone heard of FM cases where fatigue and cognitive issues occur before pain sets in?

 

January - July 15

Nick - I'm sure there are cases where fatigue and brain fog precede the official fibro diagnosis -- for some time, diagnosing fibromyalgia was based on unexplained pain, with specific tender points on the body, often accompanied by sleep problems, exhaustion, etc. The main problem that led doctors to suspect fibro, though, was unexplained pain. I believe they have revised the diagnostic criteria in the last few years though, and I am not up on it. Google for more information on that. I certainly suffered from fatigue for many years before the pain set in. The pain was what led to my diagnosis.

 

January - July 15

PS. Be careful with H-5-HTP and make sure you research that supplement. It can interact with things. Also, be careful of taking drugs with names likes "Sleep-Eze" and make sure you know exactly what is in it and research each ingredient.

If you google drugs (dot) com, you can get to a site that checks for drug interactions. I just googled it and plugged in 5-HTP. It has 54 MAJOR drug interactions (and other moderate interactions), mostly with drugs that fibro patients often take, like antidepressants, pain meds, and even acetaminophen. Please check up on this. I took it for a while years ago, and had problems.

 

Nick19 - July 15

thanks January

I'm not currently on any meds that might react with 5HTP. I've been taking it on and off for a few years now, along with other supplements, and didn't have a problem. If I start any meds I will definitely check up on possible reactions.

 

January - July 15

Great! I believe it can be very helpful for some people -- but you have to know what you're doing.

Re the sleep problem - are you taking sublingual melatonin? I have found this works MUCH better than the pills you swallow. Also, I was advised that a small snack of carbs would help me sleep at night. And milk helps, if you can tolerate dairy. You probably know this too, but it's bad to be on the computer or watching TV late at night - the light keeps your brain awake.

 

Nick19 - July 19

What does everyone think of viral testing and anti-viral therapy for FM/ME ? I am looking into testing for CMV, HHV6, EBV. I can get free tests for these things covered in Ontario under our public health care plan, but I'm wondering if paying for a private test at a US lab just over the border might be worthwhile (PCR/DNA vs. IgG). Keep in mind I'm coming fresh off of flu-like illness that's led into this.

 

January - July 19

Absolutely, I would recommend it. I had Epstein Barr virus (mono) about a decade before I got diagnosed. I know some people who had it, and said they were never the same afterwards. Get checked for Lyme Disease, as many people think there's a high correlation. As for the 8 herpes viruses, the good thing is there are effective antiviral drugs that target them. I wrote a long post before on the various herpes viruses, based on a paper I did for class years ago. I've recently read some theories that Alzheimer's may be linked to HSV-1 infection (and 80-90% of us run into the cold sore virus in childhood). How well we fight these viruses off depends on how healthy our immune systems are, so staying away from allergens, which depress the immune system, is important! There are antiviral supplements too.

Then there's shingles (very painful) which is related to chickenpox. I developed shingles - repeatedly - during a time when I was having multiple surgeries and was very run down and sick. Luckily, it was minor, but it was not treated with medication, and I developed lasting neuralgia, which still triggers every time I eat food I'm allergic to! Later, my doctor gave me antiviral meds, and it really improved the way I felt, including my brain functioning! So I think there may be something to the theory that herpes viruses can cause a mild form of chronic encephalitis with symptoms like exhaustion and brain fog. After all, these viruses live in the nerves, travel along the nerves and, when activated, attack the nerves, including the brain.

I think the idea of treating viral infections in fibromyalgia is not well accepted and not well known. There is a doctor online, Dr. Dan Dantini, who has a lot of information about viral illnesses and fibro. You might check his website. I believe he will work with you or your doctors wherever you are. Used to be that way, I haven't checked him out recently.

Good luck Nick, please come back and share whatever you learn on your journey. I think the only way we are going to get a real cure for fibromyalgia is to pull together as a community and share our knowledge.

 

January - July 19

And Nick, here's a PS. I got a severe "flu" many years ago. I was tested for viruses and it all came back negative (according to the technology they had then). I am now convinced that I came down with this illness because of my severe shellfish allergy. After avoiding shellfish since early childhood, I was convinced to "just try it." I did, starting with clams casino - nothing happened - i.e., no hives or asthma. So I went on a seafood binge that summer. My boyfriend and I took a trip to Cape Cod and stuffed ourselves with every kind of shellfish there was! Right after I got home, I wound up in bed with a high fever, pain, rashes and headaches. Went to several doctors - no one could diagnose. The last one I went to confessed he was mystified, and asked me to please call and tell him what it was, if I ever found out. All that was over 30 years ago! It took me about 5 years to nail down the fact that I have a bizarre delayed allergy to shellfish of all kinds, and each type causes different symptoms. The trip to Cape Cod overloaded me with toxins, and must have blown my immune system out. That's my theory, anyway.

 

Nick19 - July 19

Thanks January, this is great advice. I've already ordered Dantini's book, should have it by tomorrow.

I will go back to my GP and maybe get the CMV and EBV tests

 

January - July 19

PPS. Nick, I just checked on Dr. Dan Dantini. I suggest googling him on You Tube - he has a lot of interesting subjects there on video. He also apparently has a book out now - and it refers to the anti-viral theories of "Dr. Bihari," with whom I am not familiar. Research time!

 

January - July 19

Hey Nick, looks like our messages crossed! You are ahead of me! Let us know what you find out! I did not even know he had a book out.

 

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