new here and hope it is okay to post this...

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by fairly_odd_mother, Mar 8, 2013.

  1. I need to vent. Well I need to cry into my pillow but that will wait. I know you have a lot on your mind and have a lot of your own to deal with, and I really appreciate you taking a moment to read this.

    Quick background. I got hit with Guillain-Barre Syndrome in 06. Long story with that one. 2 years later I was diagnosed (twice by different docs) with fibro as well. As if a person needs pain on top of pain. I am trying to sort out and learn what pain is which....GBS related re-innervation or fibro.

    Some of the things I deal with:
    numbness and tingling in feet, legs, hands, arms, face, sometimes even lips, tongue and throat. And in patches body wide.
    Muscle twitching
    muscle weakness (I can only describe it as feeling as if I have worked out big time...I know that the nerves that have 'grown back' are not as efficient as the originals so this can cause such issues)
    Sleep issues. Can't sleep, can't stay awake, waking during the night, unable to get on a regular or workable sleep pattern.
    Digestive issues (chronic constipation...no matter what fiber product I have tried or how much water I drink. This is a problem.)
    Body wide pain that sometimes feels bone deep
    Joint pain
    tendon and ligament pain
    anxiety
    depression
    my body temp has been known to drop to 92.9-93.3 for no reason. Warm house, dressed appropriately, wrapped in blankets. Doesn't matter. I will suddenly feel as if I am freezing to death! I will also sweat and not have much of a change in normal body temp which since the GBS has been 97.3. I have three different thermometers I use to triple check this.
    Hair loss
    weight gain
    brain fog
    should i go on? or do you have an idea that I am a mess.

    I am on xanax... .5 three xdaily if needed, 2mg at bedtime, 10 mg of flexeril 3x daily if needed, recently put on vitamin d 50,000 IU 2x a week for 4 weeks and then drop to 1x week for 4 weeks and then get retested, Meloxicam 7.5 as needed (this did help with a recent very intense flare up of some kind but has not really helped the past couple of days now that things are at a 'dull roar'). No anti depressants because they make me suicidal. No neurontin because I hallucinated and went into a manic. Was told no gaba products at all ever.

    I feel so down. I realized after some research that what I thought I was dealing with pain wise and inflammation wise was probably just fibro. I recently had a flare up where my joints hurt, my tendons and ligaments hurt, I could barely walk and was in tears with the pain. Went to the doc, had some blood work done for possible RA and thyroid and other auto immune markers. Only thing that came back positive was Sed rate and CRP. I have had flare ups like this in the past and have had many of them but I think I have only been in to the doc for it twice now (once was given a 10 day round of prednisone which helped).

    Since I am unable to take the usual pain meds with codeine, I figured there wasn't anything they would or could do about it so I suffered on my own and did what I could. I poked around after getting the results of the other tests and those were all negative for anything scary like RA, which every single symptom seems to point to. And other symptoms point to a thyroid issue, but that was also okay. Then I find out that Fibro isn't an inflammatory condition. Um. Okay then if that is true and the anti inflammatory meds helped take a lot of the edge off, then what the hell is going on?? Something is wrong. I feel it, I know it, I just can't explain why or how I feel or know it. I thought maybe it's just stress, but I am quite friendly with stress, we are on a first name basis, and this is not the same.

    I don't know what I am dealing with and an unknown is a bit frightening. I tried a lap on our treadmill thinking it would help get things moving...almost immediately I started hurting again so much that my knees and feet just could not handle it and I couldn't handle the burning in my muscles. Ticked me off and was such a disappointment. As if gaining weight isn't a kick in the pants, trying to do something about it is proving to be pointless. I feel pretty alone and am trying so hard not to bring things up with my SO because he is one of those fix it guys and gets upset that this is something he can not fix. I will be seeing a new counselor soon...I have no idea why, their 'coping skills' suck and mine are already bad enough. I am so angry about all of this and feel as if I have lost so much of who I was. I don't know how to get used to the 'new' me and live within my limits because those limits change on a dime. Can you help me? Give me some ideas or insight or point me in a direction of some sort? I have run into a brick wall as far as my research into all of this goes.

    thanks for listening. need to go lay down.
  2. Mikie

    Mikie Moderator

    I am sorry to hear what you have been through. I agree that seeing an endo might help. In fact, I believe in seeing as many docs as necessary to address all one's symptoms. Of course, this can lead to being overmedicated or having one med interact badly with another. There ought to be one specialist in charge. There are docs out there who specialize in our illnesses. Good luck to you.

    Love, Mikie
  3. luigi21

    luigi21 Member

    My sister was diagnosed guillian- barre when i was 14 and she was 15. It is frightening because of the very nature of it. However she was ok to. But i should imagine that is going to scare you now. Especially when you get numbness. However for me this is part of fibro. In fact if you look at the long list of symptoms of fibro you'd be able to tick yours off. However if anything does worry you run it past you doctor.

    Getting our medications right is a difficult balancing act. One thing might work for a while however its usually innevitable that the dosage has to be increased as we become more tolerant. We get new symptims cropping up just when you think you have them all. What people seem to misunderstand is they think fibro is variable, this is wrong. The symptoms of fibro can be variable but we always have fibromyalgia. We are never symptom free but can suffer varying degrees of them symptoms day to day.

    Sleep is very important if you'te not sleeping you need to get that sorted. I take 2mg of melatonin 2hrs before i go to bed.

    So it is a journey in itself and it isnt easy. But reach out for the help thats on offer, work with your doctor, use heat, and relaxation exercises, right to do lists, use a calender and your mobile alarm to alert you to appointments etc, keep a diary.
    And keep in touch and dont be afraid to ask questions

    kind regards

    katherine x
  4. mbofov

    mbofov Member

    You do have a heck of a lot going on. There are so many possibilities for what's happening. Don't give up hope- many people here have dealt with many of the same issues.

    It's quite possible your thyroid's involved (hair loss, weight gain, body temp issues, depression, brain fog, all can be linked to low thyroid). Even though your blood work for thyroid was "normal", there is wide disagreement in the medical community about what normal levels are.

    It would be really good if you could see an integrative medicine doctor. They should look at everything in more depth than regular doctors, and also will look at diet and supplements etc. which can make a huge difference. They work at getting at the root cause of problems, instead of masking symptoms with drugs. A good website to find such a doctor is acam.org - if you scroll over "health resources" at the top of the page, you'll see a search feature to find integrative medicine doctors in your area.

    High CRP indicates inflammation. Fish oil is very good for reducing inflammation. Also, try cutting out sugar and wheat, both of which can cause inflammation, and see what happens. There's lots of things you can do. Another member on this board is having good success with a new supplement called Anatabloc (you can look for her post)

    Take care -

    Mary
  5. Ronaldo60

    Ronaldo60 Member

    Only a hormonal problem could explain your symptoms, and are you sure about the GBS-diagnosis? Did you have the spinal-tap and nerve-function testing for that?
  6. mbofov

    mbofov Member

    A high sed rate also indicates inflammation. Omega 3 fatty acids in general (flaxseed is a very good source, as well as fish oil) help reduce inflammation, as well as dietary changes (cutting out sugar, white flour, sodas, etc.)

    Also, your nerve problems could be related to low B12. My vegetarian sister a few years ago had numbness and tingling that would come and go on various parts of her body, it was a little scary. Well, she started taking B12 and her symptoms went away. B12 deficiency can cause nerve damage. Also low B12 can cause brain fog, fatigue, etc. You might also considering adding folate (not folic acid - folic acid is a synthetic form of folate, which many people have trouble converting into a form useable by the body). Look for products that have metafolin, a bioavailable form of folate. If you start taking folate, be sure to take B12 as well, as taking folate alone can mask a B12 deficiency.

    If you start taking B12 and folate, make sure you get enough potassium - B12 and folate can cause healing and cell regeneration to take place, which can increase the body's need for potassium, and if you don't get enough potassium, it can cause severe fatigue, among other things.

    Low magnesium can cause pain and anxiety. Many people have been helped by upping their magnesium levels. One more thing to consider.

    Good luck - there are so many knowledgable people on this board who can help, and an integrative medicine doctor in particular could help the most. I have not found a single regular M.D. who knows anything about CFS/ME, and am sure the same holds true for FM.

    Mary
    [This Message was Edited on 03/09/2013]
  7. Hi Mikie

    I will ask my doctor about seeing an endo and maybe even ask about a rheumy. I have never seen either of these types of doctors. It seems when seeing a doctor, explaining med sensitivity they then note I refused meds because I am afraid of side effects. But they don't note WHY. I had been to a 'specialist' in fibro and she was completely convinced that I definitely had it, but then decided since I couldn't tolerate the meds she Rx'ed I must not have fibro after all and to seek medical care elsewhere. So frustrating. I will keep searching for those pieces to this puzzle of mine.

    thank you
  8. It is so unusual to find someone else who has had some sort of experience with GBS. I am so glad your sister is okay! It has been a life changing journey for me and yes anything that crops up sends up red flags and alarm bells.

    I think this has been so difficult for me to accept because, like you said, we always have fibro. It doesn't go away, it just varies in intensity and symptoms that are obvious from day to day. Learning limits is difficult, trying to find a balance is also difficult. I have people in my life who have pointed out how lucky I am because it could be worse, or they understand because they also have chronic pain. I get so upset because their chronic pain can be managed with meds because they are not sensitive or they can even go all out and have surgery. For them, there is a possible solution that could make their lives so much better. For myself I feel disheartened because there seems to be no relief and I have no idea what I will be facing each morning I wake up...or afternoon. ugh.

    I will try to get myself back into using my yoga stretching dvd in the evenings. I may be tight and uncomfortable the next morning and have to start all over again, but at least it feels like I am doing something positive for myself.

    thank you for your feedback and ideas, I am taking notes :)

    Lori
  9. hi there

    yes, I had a spinal and have had several nerve function tests. The spinal was negative for protein, but that is not unusual even in severe cases. But the nerve function tests did confirm diagnosis. Each was done at different stages in my "journey" and have all shown evidence of damage and the latest showed evidence of reinnervation. Of course the new nerves are nowhere near as efficient and effective as the originals, so I know this complicates things a bit. On the bright side, I was told even with a small nerve fiber biopsy I don't have neuropathy...although I have on going symptoms of it. More than likely it is the new nerves not communicating properly? I don't know.
    No I don't have an endocrinologist. But will inquire about one at my next doctors visit.

    Thank you!
  10. I believe there is thyroid involvement as well. Definitely not taking the test as gospel because too many things point in that direction. I mean as in glaringly obvious and how can a doctor just overlook them instead of being curious and digging deeper.

    I do take supplements, fish oil, sea buckthorn berry (another type of EFA), multi vitamin without iron, coconut oil, raw unfiltered organic apple cider vinegar, drink a lot of water, a green food supplement, chia seeds. I have tried magnesium, calcium, alpha lipoic acid, chromium picolinate, GLA. You'd think my blood pressure and cholesterol would be outstanding. Not the case and these things have also been of little help otherwise as well. Although I hold out hope. I went off of all supplements for almost a year to see if there actually was any difference. For general health reasons, I started using them again, and honestly can not tell a difference.

    I definitely crave carbs and sweets. Feeling guilty for having such cravings. I will try to choose a better treat than giving in to processed candy and such. I try to keep fruit on hand and use that instead. Something whole grain for the carb cravings. Cutting out sugar and wheat would be difficult but I can give it a try. I have heard that agave is a low glycemic sweetener and do like the taste, is this an option?

    Thank you so much for your help. Like I said in another reply, I am taking notes.

    Lori