FM and Guillain Barre

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 improved 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.

I should add 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 possibly have an infectious cause.

I’m seeing my GP next week and I’m trying to get back to the neurologist due to these new yet ongoing symptoms.

My question is, does this sounds like any known FM experience?

Hi Bob,

Welcome to the forum. I was diagnosed with fibromyalgia about 2 months ago. As Robin said fibro is very difficult to diagnose as there are no direct tests for it. My chief complaint (on a list of many) is the extreme stiffness in my joints and from what feels like inflamation, which I don't have. The deading fatigue is absolutely horrible as well. I can sleep 8-9 hours straight at night and still be overly exhausted to the point of falling asleep on my way to work. Quite nerve wracking.

I certainly hope all works out and you start to feel better. Being 30 as well, I don't know when to call it quits because of my new limitations, and believe me if I over do it, I pay for it for days.

Check out Fibro101. It's awesome and helps answer some questions that you may have.

Best of luck
-Amy

Bob,

I went to my PCP for months with the same complaints and had several tests, exams, etc... After everything coming back fine, my PCP (who I have been with for over 10 years, and whom I trust completely) told me to go see a Rheumatologist as there are several tests they are able to do to go more in detail regarding inflamatory disease, etc... After more tests with the Rheumy, all was fine and I was diagnosed with fibro.

Stress has played a MAJOR part on my fibro. I tragically lost my mother and step father in October 2011, and that's when the "flare ups" really started getting bad. It was very difficult for me to admit to my shortcomings as I like to play SuperMom.

Current treatment for my fibro, Lyrica 125 mg, Tramadol for pain (as needed), Celexa 40 mg, Lunesta 3 mg, B12 complex, and 50,000 IU of D3 weekly. Still in the beginning phases of my treatment, so hopefully the right mix will be found as I can't wait to get a little normalcy back in my life.

I would suggest to find a good Rheumatologist, maybe ask your PCP to perform the bloodwork that you had done again.

I hope you get everything sorted out.

Good luck!

Amy

thanks Debbie

This is all pretty recent, and pain hasn't been a huge problem thus far, though I am getting sore muscles in my back, possibly due to lack of sleep (or at least that's a contributing factor).

I'm worried about FM because I have more or less every other symptom of it--stiff joints/spine, inability to sleep or focus, urinary urgency, sensitivity to light and noise...

I will try and take care of myself until I can get some real medical attention.

Bob welcome to the fibro forum. It sounds like you have been through a lot with your health. I had a friend that had the full blown Gullian Barr syndrom. They didn't recover too much. Paraplegic with limited hand movement. That scares me to death how a healthy person goes to someone on life support in hours.

Fibro has so many symptoms that could fall under a lot of other diagnoses. Hopefully you will get a proper diagnoses. Some of your history sounds like fibro, but some of them I would be cautious about. Once you get your diagnoses, educate yourself as much as you can. It made a big difference for me.

I have had fibro for over 20 years and I have been down the hard long road trying everything to relieve the symptoms. It was here were I got my ideas how to treat myself. It's actually simple once you figure what works for you.

Bob, you had asked how I was diagnosed. We all have differant set of circumstances. My dx took years only because I was found also to have an overlap of several autoimmune connective tissue diseases.

I was put on prednisone for inflammation for the CTD's my inflammation and joint pain was relieved but I still had pain in all my soft tissue areas on both sides of my body above and below my waist. Fibro is not an inflammatory process. A tender point exam was done using light palpitations and I was experiancing bad pain. It isn't uncommon to have fibro with a CTD.

Like I mentioned in my earlier post, fibro isn't easy to dx. It took 3 rheumys to solve the CTD and fibro mystery.

Try to be patient, as it may take awhile for your dx.

Hugs, Robin

Debbie do you mind if I ask what kind of sleeping meds you were on? And for how long? I have used zopiclone with some success but it's one of those ones you aren't supposed to take for long periods of time...

Hi Bob,

Sorry to hear about your issues. I'm glad you found us. I have the sleep issue too. I can't fall asleep on my own unless I take sleep supplements. I was tried on years ago several kinds of sleeping pills but I felt very tired the next day and I was only able to sleep for 4 hrs at the most.

What's nice about the sleep supplements is you can take more if you need to in the middle of the night. I take L-Theanine and Melatonin.

Regarding what doctor to see and diagnosis, find a rheumatologist who's knowledgeable when it comes to fibromyalgia. I had gone to a neurologist and my gp and neither were as good for me as my rheumatologist was. As you probably already know, there are trigger points to tell if we have fibro. At my first appt with my rheumy she squeezed my trigger points after listening to my history, and she declared that I do have it. She even stated I have a severe case.

I try to take care of myself the best that I'm capable of without the use of medication. I think I've inspired my rheumatologist who didn't much believe in supplements when I first started seeing her several years ago. Now she recommends them to her patients.

Eating healthy, trying to keep your stress to a minimum, walking, stretching, all these can help.

Bob, I still take Nortriptyline after all these years, though I've cut down the dose. I also now take Clonopin, but I wish I had done what my hubby did with that one and only take it for a short time, because it is very addictive. He still takes it once in awhile, if he needs to be bright-eyed and bushy-tailed early in the morning. I am gradually cutting it down, too. It sure does the trick, I will give it that!

Almost Medfree, it's actually tender points that used to be crucial for the diagnosis of fibro (and is still used, to some extent, though it's not always necessary.) Trigger points cause referred pain elsewhere in the body. The 2 can coexist, but don't always.

Debbie

There are so many "theories" about Firbro since no one has really discovered exactly how it starts in everyone.

I was diagnosed way back in mid 90's...and my Dr. who is a Rheumatologist...is now known around the country as one of the most prominent in this field. He moved from our area many years ago. But this has been a huge passion of his to study this as well as Gulf War Syndrome and other types of these issues.

He believed, even back then, that a lot of has to do with how those with Fibro do not get to the deepest stage of sleep. This is when our immune systems repair themselves overnight. So, night after night....week after week...etc. of never having this happen...it's like our bodies start to attack themselves. It's not about length of sleep...but quality of sleep as I used to sleep for 12 hours but felt like I only got one hour.

He then thinks this cause the nerves in our brain to mis-fire. This makes perfect sense to me as we will have sudden as well as chronic pain in places where there is not a single form of actual "trauma"...Same idea in those with phantom limb pain.

All I know is for me....now that I am on Ambien which was actually prescribed after my last fusion surgery...I would consider my Fibro to be in remission for the last years. Even though I change positions while sleeping every hour...I sleep through the night and get close to 8 hours. I never need or take naps anymore..I get out of bed and have energy all day..

Everything revolves around getting good sleep. My emotions are stable as I'm not fatigued and can handle stress and pain better. I eat all Organic now...which also helps with my energy levels.

And with good sleep...I get in at least 45 minutes of exercise each day...along with yoga/stretching.

So it's a domino effect in a positive direction where it used to be without sleep the effect all in the negative. Exhausted, moody, edgy, more pain, mental fog, too tired/sore to exercise, make bad food choices like sugar/caffeine to stay awake...etc

So...just some things that have worked for me. I have maybe one or two Fibro days every few months!

Hi Bob,
You've gotten some great advice. I wondered could you call the neuro back and get a copy of your medical records. You should see someone and if he doesn't have any availability, then you might need to locate another doctor, preferably associated with the closest Medical School, if you have one near by and is covered by insurance. Your symptoms lean more to the neurological side of things. I don't understand how a doctor can have NO availability. I can understand if they are booked out for 3-4 months, if that's the case then make an appt for then. (PS..frustration not directed at anyone here, just the medical community)

Keep your appt with the Sleep Medicine doctor. I know mine was part of the Pulmonology doctor's office and it was like getting two doctors for one. You will most likely end up with a sleep study, so they can see what is going on with your vitals and brain waves while you'll sleep. This would also determine if you need a CPAP(or other type of machine) during the night. During all 3 of my sleep studies, which 2 of them I had CPAP equipment on, I only reached level 3 sleep. Before CPAP, I barely made it out of Level 1 sleep. So, this is a good type of doctor to see for sleep problems. Sometimes when they get the sleep problem worked out, then the other symptoms go away as they start to get restorative sleep.

You should still see a rheumatologist, if you are all concerned about Fibro. While it is hard to diagnose, they are the best to see for a diagnosis. They will most likely want 3 months of symptoms before they would even diagnose you. They will also be able to rule out other diseases and disorders that it could be. I would research the doctors in your area and try to find one that gets decent reviews. The last thing you need is to waste your time with a doctor that just doesn't care.

BTW, Difficulty Swallowing is considered an emergency according to my ENT. If this is still a problem, then it might be wise to see an Ear-Nose-Throat Doctor. They have a Barium Swallow Test that can be done to make sure that you are able to swallow adequately. Mine turned out that I have such bad nasal drainage that it causes from time to time for me to have difficulty swallowing plus I have tertiary esophageal spasms, when combined can cause food and pills to get stuck. However, I do not have any problems with the basic mechanics of swallowing drinks or food.

I hope you find all the doctors that are right for you and your situation. I hope they are able to help you quickly and get you a correct diagnosis.
Take Care,
PugMomma

I have fibro but for some reason I get a positive Epstein barre in my blood tests. Not enough for it to cause my fibro but I still think it adds to my fatigue. I take zoplicone for sleep and my dr never told me not to take it daily and it's been a year.. Haven't taken one in 2 weeks and definitely cannot sleep.