I am more confused now

Discussion in 'Fibromyalgia Main Forum' started by mamafrey, Jul 4, 2003.

  1. mamafrey

    mamafrey New Member

    I have posted a couple times this week. I have Fibro and sensory neuropathy. Like I said I have full body numbness on the left side daily, currently have been taking Neurotin for 3 months and it isn't helping. All this started BEFORE the neurotin thats why i was put on it. Both hands and feet are in alot of pain or numb, but the biggest problem is the numbness on the brain. IS THERE SOMEBODY OUT THERE who goes through this daily. I also stated i also go into like a drunk state at times. The drs. are arguing on its Fibro and its not Fibro. I am in limbo land and getting in debt from all the test that aren't showing anything. My fibro dr. is convinced its more than the Fibro - the neurologist think its just Fibro. My fibro dr. is a fibro specialist. I guess what i am wanting is to connect with someone with the same problems since i am left in limbo land. I have full body pain and like i said full body numbness but more severe on the left side. I hope there is somebody out there that can relate to this. I also loose my hearing at times and my vision does tricks on me. Was on the neuropathy message board for awhile, but it seems sensory neuropathy mainly effects the hands and feet, not widespread. I hope i am not boring you guys, but i really need someone to connect to, that can relate to all this madness. Seems like my condition does really fit in anywhere. thanks and have a happy 4th of July. God Bless All of YOU
  2. nancyneptune

    nancyneptune New Member

    I'm sorry you're in such a state. I don't have the numbness all over my body, or the hearing loss.
    What I thought of when you said that, was drug overdose. You can get all those symptoms from drug interactions and excessive dosages.
    I'm not saying you're abusing your drugs, I'm saying because of our illness, we have to be very in tune with side effcts others wouldn't have.
    Can you tell me what other drugs your on? Any drug that works on the CNS can give you the pins and needles and body numbness you speak of.
    Also that BRAIN thing! If that isn't classic OD I don't know what is! You may be too sensitive for the dosage of drugs you are on,ask your doc about that. Quickly. Good luck, N
  3. Shirl

    Shirl New Member

    Hi, welcome to our world of strange and confusing symptoms. We all have them to one degree or the other.

    I can relate to some of the numbness, including to the head feeling. But mine is gone now.

    Since you are being tested for so many different things, have your doctor test your magnesium levels. Most of us with FM/CFS are deficient in magnesium in a big way. It sounds so simply, but believe me, it has changed my life since I started taking it over two years ago.

    I rarely get the numbness anymore, the pain from the FM is way down. Now when I get a flare it only lasts days instead of weeks and months.

    You might want to get a copy of; 'The Miracle of Magnesium' by Carolyn dean MD, ND.
    I just started reading this book, but it has confirmed what has happened to me, and why.

    I sure hope you get the help you need soon. I know what you are going thorugh. The stress alone from not getting a solid answer from the medical profession is so frustrating!

    Take care, and again welcome to the board.

    Shalom, Shirl

  4. klutzo

    klutzo New Member

    If the Neuro thinks it is more, and all of your numbness is on one side, I would hope you would have had a CT scan and an MRI to rule out other things.
    Also have your thyroid checked. Hypothyroidism is rampant in Fibro people, and it can cause total mental confusion and pins and needles numbness.
    I also agree with Shirl about the magnesium. B complex too, for dealing with all the stress.
    Klutzo
  5. mamafrey

    mamafrey New Member

    yes, i have had complete blood work on that. my main dr. is a alternative dr. and practices on both sides. he does more extensive work than the main stream drs. i do have hypothyroid and have been on armour for several years. just had complete blood done again twice in the last six months and thyroid levels are fine. I have had a MRI on the brain, showed one spot they came to the conclusion it wasn't MS but the spot could be from the Fibro. I am confused though why no one has done an MRI of the spine. Who knows? i have alot of lower spine pain, i use to get burning up the spine, the neurotin has help with that, i still get the pain and electrical like currents that run up the spine and out the shoulders. It amazes me how lupus, lyme, fms and other diseases all act alike. I know for sure i can detect a storm system coming two days prior every time. the weather plays alot into this for sure. LOL and i live in indiana where it changes day to day. the humidity does a number on me also. it is sooooo nice to have people to relate to. its a God send. thanks again for your replies, it is sooooo appreciated. God Bless Everyone. mamafrey
  6. mamafrey

    mamafrey New Member

    Very interesting on the thryoid. How much mag. does a person need to take? I do take a liquid calcium/magnisum combined in a high dose. Today i started to get the numbness on the left side and my head went real numb on the left. A couple of hours went by and i was trembeling on the left side, my leg, arm and head was shaking. I was an hour late taking my neurotin, which sometimes i do that, and thats never happened before. So i don't know if it was because i needed my med. or its kinda a seizure. I told my neurologist several times, i feel like i am having a seizure nobody seems to believe me. It so scarey, i just have learned i guess to deal with it. My heart was also racing at the time. They did put me on an asprin a day for possible stroke. But the test on that came back neg. went i went into one of these and went to the ER. I am so confused and scared.