My rant.....

Discussion in 'Fibromyalgia Main Forum' started by Natedagw821, Nov 25, 2006.

  1. Natedagw821

    Natedagw821 New Member

    Hi all,

    The past few weeks have been the worst of my life. Where should I begin?

    Well, two weeks ago I was diagnosed with Carpal Tunnel Syndrome in my right arm. It's really weird pain; it goes up my entire arm. This happens whenever I use my computer and when i type. But it gets worse; now the pain is happening in my left arm as well. The pain reverberates between both arms. I dont know if this is the fibromyaglia or what,,,but I'm a COMPUTER SCIENCE major in college; i have to have my arms to type!!!!!!!!!
    Prior to being diagnosed with Carpal tunnel,,I was on my computer ALOT. 90% of the time. Writing computer programs or playing computer games.

    Its really weird,,but I had pain in my right arm 3 months ago,,but it went away in a day,,,,Now my arm has had pain for over two weeks now..What am I gonna do now? Change majors because of my freaking arms? I just dont know....
    :(

    But it gets worse than that. Since I havent been on my computer for two weeks...a new pain has been brought to the surface: NECK PAIN. I've never EVER had a problem with my neck but for the past week,,,it has been HORRIBLE. I cant even read a book for more than ten minutes w/o it hurting. It hurts SO bad it causes me to have severe head aches.

    Well u are probably wondering what my point is from this ranting: I'm just worried about my future. I see a very bleak future for myself. I'm 24 years old and I've had this dibilitating disease since i've been 19. I'm a male also so this makes it doubley hard for me. Why? Because a man must be strong to support himself. Socially, society figures that because Im a man,,i must be self sufficient. How am I ever gonna be self sufficient in life? All my dreams are going to the way side. To me,,life is hopeless. Every night I pray to God, hoping that he will take me to Heaven. I get no response from Him.

    How do you all do it? How do you make it through a day? Like you, I am in constant pain; it never ends....No matter what I do,,I'm in pain. You name it: watching a movie, bathing, reading,,going on the computer..talking..laughing,,smiling,,Its so difficult!

    I've been told my numerous docs that I've seen that I have a very severe case of FM. I've also been told that I could be in a wheelchair by the time I'm 30. It just stinks..

    I'm just about done with my rant now..thanks for being with me this far. I guess I need some positive feedback. Tell me something thats worth hearing...A new medicine for FM? SOMETHING. I've tried everything,,but nothing has helped...the only thing that KIND OF helped...was a steroid...but doctors dont like to give out that kind of stuff to a young person.

    I've also tried lyrica...that really didnt help either. The only real POSITIVE thing thats going for me is that Im going to the University of Michigan hospital in Ann Arbor. they treat FM very well and they have good results.

    Sorry for ranting ur ear off, but this has been the WORST time of my life. Ive never been in so much pain. ITS UNBEARABLE. The only thing that gives me consolation in carrying my cross..is that there ARE other people out there who suffer like me; you.

    If you could share ur story with me...and what HAS WORKED FOR YOU. Please tell me. i need the encouragment.

    Thank you all and may God bless you.

    Nathan....
  2. lenasvn

    lenasvn New Member

    There are ways to treat carpal Tunnel. here is a link if you want to read about it.

    http://www.neurologychannel.com/carpaltunnel/diagnosis.shtml#treat

    You obviously need some pain relief in form of medication. The question is if you have a good doctor who is understanding and not shy about prescribing something for you. As you can see from some other posts, there are some who have problems getting help from MD's with pain.

    If you have the funds, get a massage from a sport medecine massage therapist. Or a real shortcut, but works amazingly well considering the amount of pain I often have in my neck: hot-cold patches at the pharmacy in any grocery store. Seem like such a simple solution we don't think it's gonna work. It doesn't, either, at least not right away,,,LOL! It will take a couple of hours,but it may be worth the wait after many days of pain.

    I may have missed it, but do you have FM or CFS?

    I hope you can find relief, and you must talk to your doctor about this.

  3. I wanted to say, although it can be costly, time-consuming, and from my friends with MS, what they say differs, but, usually *INITIALLY* difficult to "train"..but wayyy worth it, cost & all, if it can save you pain, and your career---what about voice activated/controlled software, to install & use when applicable/possible..

    My friends "dragon" helps him to be able to chat, though, usernames, can sometimes take quite a while to program into the voice equipment (naturally speaking, or speak naturally, can't think of it, someone here* got it recently, and it saves the hands of typing,,,)

    One of my other friends, with MS, a quadreplegic, uses the software also, when necessary, but, it frustrates her (older edition, though, I believe) and, it also depends how clearly you are able to speak into it...as to how accurate it types...she uses it when her husband cannot be with her to chat--which is not often at all...

    but, the other friend, always uses it, as he has an unsupportive wife & daughter, sadly. They shop, while he is just housebound with COPD, MS, and many other ailments. Anyways, have you ever looked into this software? Would it be a possibility for you? Even if it saved you 50% of typing, would be well worth it, wouldn't it?

    And, in the meantime, definitely, you need some medications for relief...I too tried Lyrica.....thought it would be at least one drug in my 'new, amazing arsenol" until I developed at least* a 100% increase in muscle twitching & jerking, tremors, and then sudden-onsets of blurred vision, that were pretty severe, and did not go away in time...So, I had to stop it too, I had been on 300mg, and at FIRST, it, with MScontin/MSIR, were a miracle...as long as I was still 'dopey" from side effects..I was also pain-free or near it, and able to function---side effects wore off, so did much of pain relief...but the lyrica still helped my facial nerve pain nearly 100%, and other areas of nerve pain too.

    I haven't found a magic bullet, combo, or any...I'm pretty depressed right now, and I do understand, and agree with men who have this just as dibilitating as women, though, It IS just as hard on women, on a different token.."men are the breadwinners" "self/family supportive" but, also, women, are supposed to "cook, clean, shop, bear & raise children"....and grin & bear it, through it all. If not--then they are "hysterical female syndrome," labelled, or "bored housewives(even ones with FULL careers!?), and

    we ALL get the "aiths syndrome" label by some doctors (which, by the way, means "all in the head syndrome", a friend of mine, in the UK, who is a medical transcriptionist, hears doctors actually say that to each other, she's even heard it as someone walked IN to the ER...not even checked in yet, and they get called "aiths syndrome" case. HOW REDICULOUS, cruel, mocking....and playing GOD if they can see what's wrong, at the door!

    When I was early into being fully disabled, throwing up all the time, low-grade fevers, etc..I first was constantly being taken to the ER by hubby, mother, sister, etc...I learned the routine- harsh, crude treatment, rude comments, right to my face OR outside the door...shots of phenergan, bentyl, reglan etc in the butt---and kicked out as quickly as possible......only to continue vomiting. Wouldn't even observe long enough to see if the meds worked, no I.v.'s for hydration, nada.

    I then refused to go ever again, unless I cut a limb off first..but, as Illness calls the shots here, not me...I've gone a couple other times, but, always after* calling a doctor, who told me to go in...and doctors have been switched from the ER too, and I've actually been treated fully, and WITH RESPECT, twice now......except for a RETARDED comment by an elderly lab lady--who dogged fibro..then SAID her daughter-in-law gets days where she MUST lay down from the fatigue------pshhh! Go figure.

    I know, young as you are, and other reasons too (all of us will tell you, you probably know though, if ER visit IS necessary-best not to mention FMS/CFS at all, just the reason you are there.) Sad. I stuck to this, until I decided, that, if I say FMS, and they treat me poorly (hmm, since MS--it's LESS often, but still happens) that I will just not allow it. I will NOT be treated like DOG POO that stuck to their shoe, they're trying to wipe off!

    Same for any doctor, not just ER, realize that's exactly how some act, and that no way should you tolerate it. Persistance, sometimes, unfortunately, is the only way to get what you need, it's like "fine! God! here you go! Just quit bothering me!!!" but, hey, any means necessary. We suffer, not them. It's NICE when they treat you with respect* and help, but, if not....then "squeaky wheel gets the grease" keep going, repeat yourself, the pain, the level, the consistancy, or on/off cycle, how it's affecting life..etc.

    Explain to the doctor, your degree, the importance of it, and keeping it, and that you DON"T WANT to throw it all away. You need and WANT treatment to help you function for as long as possible, so they don't think you are depressed (some will anyways) and just want to "give up" on life, and "go on disability". I let my doctors know a million times, to make SURE they got it....that, I LIKED my LIFE, and had NO intentions of 'throwing it all away" NONE of US would. Not without SERIOUS mental problems!

    Even those that weren't totally happy with life, sure as he** wouldn't let go of what they HAD for THIS.

    Also---I am TICKED! What unprofessional, a$$hole, told you youd be in a wheelchair by 30? Where's the proof in that? test results show spinal lesions, or something else that may cause total loss of muscle/nerve, etc function? Again, playing GOD/psychic....or just flat out being an a##hole. If they said THAT-then why aren't THEY doing ANYTHING to help PREVENT you from getting to that point?

    I can say this, because, I've been there. I had a WELL meaning therapist, that hated seeing me stagger/fall with a cane---she was angry at my neuro, & said I needed a wheelchair with hand controls! (gasp!) My mother was enraged, I was sad, confused, "maybe she's right, it would be soo much easier on me, more freedom, less pain"..then I thought-----wait a minute!! GOD NO! I'm (26 at the time) yrs old! I've got to do what I can, WHEN I can, when I can't, I can't....but I will NOT go into a motorized wheelchair full time, just because I hurt & I'm weak.

    I got rid of my CANE last march-just told myself IF I fall, I'll fall freely, not land on that painful metal plate at the bottom of my quad cane, plus, nearly dislocate my shoulder, using the cane to try & stop a fall...etc.. Glutathione, IV 3 times a week, for 6 months, and weekly b12, & other treatments may have helped, my knee still buckles...but, I have NOT hit the ground completely, in many many MANY months... My counselor was a nurse, and truly meant well, was tired of me falling..but, lord= I think my muscles spasm now....what if I'd quit using them altogether? And, the falls have stopped, for now, I stumble, stagger, etc...but haven't fallen, so, my knee isn't all torn up all the time for now..

    If I ever NEED to, I have my MANUAL wheelchair, 2 canes, and even a walker, but...my NEUROLOGIST, and many neurosurgeons, never told ME "you'll be in a wheelchair by the time you're 30"...even if they THOUGHT it...they did NOT say it. If they had, I'd have spit in their face, and said, "oh btw, you're FIRED". No one needs a doctor with such a downer, negative outlook, geez!

    My neuro DID tell my mother he felt they'll never find a cure for fibromyalgia- never. We both kinda rolled our eyes then. Don't need any DOCTORS with that attitude, for pete's sake!

    I wish you the best of luck finding relief, and hope you can find something* to ease the amount of typing, or anything* to help just a *little*.

    ((((hugs)))) keep praying. But, ya know--if ya pray to god, every night, to take you to heaven...and "get no response" there's always a reason.

    I don't pray that, though it is HARD not to sometimes...I just say "god, I don't want to die, I just don't want to live LIKE THIS anymore, please help me, and everyone else suffering so terribly, send me angels, in the form of doctors, or take some of this pain away...give me just an ounce of energy, to feel like I'm worth something in this world" .....etc.

    God doesn't WANT you yet, honey. There's a reason you're here, it's just (near) impossible to figure out, sometimes, in sooooo much, constant pain! Just know that there IS. I'm still* looking for my own reason. But, we surely were not put here, only to see our lives 'end' before they even began, getting ill so early. So, we've GOTTA know, there's SOMETHING else there for us.


    With sympathy,

    Laura.


    What, if any meds have you been on? RE: Anti-convulsants, pain meds, anti-inflammatories???

    (I'm sorry too, that they won't give you steroids, have you asked, for just short courses, maybe, and told doc they help? I've had them crammed down my throat for over 2.5 yrs, and now refuse* anymore! So, ironic, sometimes, and unfortunate.)
  4. Natedagw821

    Natedagw821 New Member

    Hello,

    Thank you for ur kind replies.

    To answer ur questions..I havent really been on any pain meds...

    My doctor told me I might be in a wheelchair because I tested positive for Rhematoid factor...it was such a minute amount though..they called it a false positive....so..i dont know...I'll talk to my doc at uofm on the 13th of dec. hopefully we can figure out whats going on.

    God bless you,

    Nathan
  5. chloeuk

    chloeuk New Member

    Sorry that life is so hard for you right now..it is all so unfair and you have every right to feel completely fed up...what you have to do is channel that frustration into finding something that can help you. I have been ill for over a year and about 6 weeks ago I went into a very painful flare, at times I could hardly move because of the pain..my neck was also very bad and I had microwave treatment done at my drs, it is a very intense heat that goes deep into the muscles and it did help.

    The one thing that has worked for me is gabapentin, I started it over a week ago and the next day I felt 90% better, my pain is so low that I am no longer on pain meds for it...if you havent tried it then ask your dr for it...it may work and obviously it may not but you have nothing to lose...hope you find something that works for you..I know there is no cure for this DD but I have found something to manage the symptoms and hope you do too.
  6. boltchik

    boltchik New Member

    I am sorry you are having such a rough time. I just wanted to let you know that I will say a prayer for you. I also tested positive for the RA factor twice. It was also barely over the required level. I saw a rheumatologist both times and he does not think I have RA. Some people test barely positive and they don't develop RA, I hope this is also the case for you. Well, I just wanted to send some positive thoughts your way. I suspect God is not answering your prayer to take you away because he has other things in mind for you. I am sure he will answer, but maybe not in the way you would expect. Keep your spirits up and take good care of yourself. Kim :)
  7. padre

    padre New Member

    Nathan:
    It stinks. It is unfair. It is unexplainable. You do not deserve it. That is just the way the rest of us feel. Go to Ann Arbor and tell them how you feel and ask them to participate with you in getting well.

    You say you tried a steriod. One thing they do is make you depressed and allow your mind to race. They may help your body, but some of what you are feeling could be from the drug.

    You close with asking God's blessing on us. May I suggest that you tell God what you really feel about this. You sound mad at God. Believe me when I say that complaining to God can help. God's shoulders are broad. You will not irritate the almighty. I say this as one who has had a lover's quarrel with God about my FMS for over 30 years.

    Oh, what has worked for me? I started by letting God have it and then proceeded to finding a doctor that did not think he/she was God. Next I got off of steriods and found a way to sleep (Elavil and Flexeril). This may not work for you, but you will find your own way. I know it.
  8. really consider (if it IS doable, at all) the voice software, if not for the necessary work, then it could be used for posting here, chatting with friends, even gaming, and save the arms for the stuff that MUST be done..

    besttt of luck at UofM, I *hear* they are good, I'll pray you get an angel in the form of a confident, compassionate, competent doctor, that will help...I'd say that we are TOO YOUNG to suffer this way...but NO one, at ANY age, should suffer this way...it's just being young on top of being sick--seems to make it much ?easier? to get frustrated, depressed, feel hopeless, and become jaded & angry at the world quicker,

    or harder for us to snap out of those emotions. For me, too, anger is "easier" than sadness. I only* tend to cycle, between grief, and anger. Seems to be no middle.

    Reason being for all the anger, really,(I think, at least partially) is that--there's no one there, no 'thing' or person, to be mad at or make PAY for this. Collectively, yes, angry at worthless doctors, or even genetics, or whatever our world/environment knowingly, or unknowingly has exsposed us to- but, it still doesn't relieve the anger/rage/sadness because you can't PUNCH, a disease...can't "Kick it's a$$" & feel better. And, not to mention, all the time, when you're ill, that you just have to lay & think, when you can't sleep from pain. Angry that we had to get sick, and there are axe murderers/rapists, etc that are perfectly healthy, and we feel it's a 'punishment' yet don't really understand what for. Nothing we've done in our lives, warrants THIS punishment, and, at least in MY heart, (have to KEEP it in my HEAD) I know, that god doesn't punish, and did not put us here to suffer. Like I said, I'm* still working on WHY I AM here, but, I just know I am, and for reason. I've survived near fatal anesthesia, at age 5, many car accidents, but a very serious one at 19,....there's something for us, somewhere, & someday.

    Regarding steroids, yes, I used to have a love/hate relationship with them. They are the ONLY thing that totally helps my facial nerve pain (trigeminal neuralgia) & the botched surgery, for it...but, they also after 2.5 yrs, have changed my moods, permanently? After so many high doses, I think my hips have gotten worse, due to them (they can cause necrosis, particularly in the hips & shoulders, in long term use)...so,

    I worry for people who have no choice, but to rely on them for the relief they provide. They're the reason my aunt is diabetic, and has no neck now, due to the "moon face" her head/neck have become one, belly is bloated out, etc...She's been on prednisone for over 15yrs now, and can only get down to 5mgs, or she cannot move, (rheumatoid arthritis) and she hates that she can never go off of them completely..They've done a number on her cognitive status & mood, too, but, without them, she's bedridden, praying for death, etc. They're a mixed blessing, but, can quickly turn to just plain, pure he**..

    Short bursts, help tremendously, but, my doctors resort to them everytime nothing else (traditional) works..and I believe it's made my adrenal issues much worse, hormones worse, blood sugars, etc..

    Now, I refuse anymore, because, the mental anxiety/manias got worse each time. Too hard not just on ME, but on hubby, or anyone else around me. And+ the weight gain/loss over & over, is awful on my body.

    But, I hope they will help you SOMEHOW at UofM, or anywhere you end up for help...If there's inflammation involved, they do tend to use steroids, for anti-inflammatory, but, there ARE other drugs, or combo's, that are less harsh than just straight out steroids..

    I always had to be put on steroids WITH pain meds, because the few days coming off them, made my skin BURN to be touched, glands swell, back hurt wayyy worse, etc..

    It's tough, I hope you'll get help soon, and the safest help, (i.e. stomach, bowel issues meds can cause, reflux, etc..) So, gentle, but perfectly effective, relief, as soon as possible..

    With pain relief, the mind can get better. It's all the pain/insomnia due to pain, etc..that makes us see no light at the end of the tunnel...

    I hope soon your good days far outweigh your bad ones.

    P.S. I still want to kick the doctor for telling you you'll end up in a wheelchair by 30= that doc OBVIOUSLY isn't up on just how MANY of us have abnormal, borderline, etc tests! SHEESH!

    My aunt's ANA is 1:1260 (or 1280)? She's had typical "butterfly" rash, as long as I'VE been alive, at least, and many other abnormalities....never dx'd with Lupus, though.....MS, then not MS, then etc etc etc...

    Our bodies, lie, hide, go from 'normal' to abnormal, sometimes just one month to another...

    I just wish you the best, as soon as possible. We're all here with you.


    Laura
  9. Abbycat

    Abbycat New Member

    I was wondering what kind of steroid you took and the dosage and for how long. The reason I ask is because steroids decrease inflammation. That may be why you felt better. Do you have other areas, besides your arms that are painful? Any joints? Do your fingers hurt? If so which joints?

    I was diagnosed with RA and had no positive RA factor. I didn't even have swelling that you could see, but I could not get off a low dose of prednisone for anything. The pain was unbearable. I took every RA drug there is almost and was finally diagnosed with FM also. I take Methotrexate for RA and Lyrica helps a lot with the fibro pain. Plus other stuff. I wonder if you have mild RA too.

    For the carpel tunnel, (I was diagnosed with that too), I used anti-inflammatories, like Alleve, and wrist braces. You can get them at any drug store. Find some that are comfortable for you and then use them when you are typing. That helped me with some of the pain.

    Also getting up and stretching your neck and shoulders helps too. I used those back stick on things too for my sore back, but I found that a product called Jointritis worked better. You can get that at the drug store too. I get the roll on. It's smelly, like menthol, but it works like a dream on muscle pain. Try it on your neck and upper back. This stuff has saved my sanity more than anything else.

    Another thing that may help with the shooting pain in your arms is to massage your upper back muscles. I use a tennis ball stuck into a knee high nylon, I guess you could use a tube sock. While your sitting in your chair, drop the ball over your shoulder, holding the end of the sock. Lean back on the ball. Move around until you find a sore spot and then work the sore spot out. After that stretch by putting your arm behind your head and stretch to one side.


    I really feel for you. It sounds like everything is happening all at once and that's the way it was for me. I would ask your doctor for a pain medication to get you through until they find out what is going on. There is help, it may just take a little while. I hope some of my home remedys help you.

    Abbycat
  10. Natedagw821

    Natedagw821 New Member

    Well lets see,

    To answer ur questions:

    I had a false positive of RA back in '02. That is why the doctor told me that I might be in a wheelchair by the time I'm 30. Go figure..

    Anyway,,my joints ache all over. My fingers hurt and my wrists,,,I also get A LOT of popping in the joints...especially my ankles! Whats even worse is that it is VERY difficult to walk; most of the time. It is actually a chore for me to walk from one room to the next.

    Another thing that is hit home with this DD is that I get slurred speech really badly. It sounds like Im drunk when I talk; 90% of the time. IT gets worse when there is a loud noise in the backround.

    The steroid that I was on...I think it was prednisone. MY DO gave me a dose pack to see how it would work. IT helped out A LOT! I was only on it for a week though.

    I guess the hardest thing about my current situation is this: I had a psycotic break in 2005 and I lost all my friends. I have no one to talk to; just my mom and dad; maybe the occasional priest but that's it. I'm not a very social person anymore because the anti-psycotic drugs have that kind of social effect. I currently take Geodon and lamictal for my mental state.

    I guess you all are right; I must get a good doctor and have him put me on something for the pain! Something that actually works! I have tried just about all their is for pain; lyrica, cymbalta, vicodin, tramadol; nothing really worked,,,the only thing that came CLOSE to working was the dose pack that I was on.

    Also, a lot of my depression comes from my mental disorder. I have Bipolar Mania with psycotic idiations(PSYCOSIS). It's really hard for me to stay positive sometimes. Sometimes I'll be up for a week, then I'll be down for 2 weeks. I guess the thing that really scares me is that Im 24 and im already on disability. How will I make it on a full time job? I've read a lot of stories about people who have FM who cant work at all. HOW DO YOU ALL MAKE IT on disability? I only get 635 a month; I CANNOT live on that kind of money forever! And like I said earlier, im not a very social person so dating is out of the question(for now at least).

    One good thing that I have going on is that my mom and stepdad are getting a membership to the YMCA. YAY! I'll be able to soak in a hot tub. I also hear that swimming is VERY good for FM. I can't wait!

    Someone mentioned that gabapentin(NEURONTIN) is very good for FM. Did it take all of ur pain away? My counsoler told me that her friend has FM; she is currently on neurontin and she is doing very well on it. Her doc told her that she would never be able to work, but now she is on neurontin and is working full time.

    I now have some questions for you about supplements:

    1) I heard that Creatine monohydrate helps people with FM in a great way; is this true?

    2) Is it important to be on a multivitamin? Megaman multivitamin?

    3) If you have taken ANYTHIGN at all; what ONE thing can you NOT live without: supplement or drug? What has helped u with pain the most?

    Thanks for sticking with me this far and I hope to talk with you all very soon.

    God bless you,

    Nathan
  11. IowaMorningGlory

    IowaMorningGlory New Member

    If my typing is bad forgive me, I have a kitten trying to help me type!

    I am so sorry for6 all you are going through. Seems like an awful lot at your age.

    I have had FM for a couple years now, undiagnosed. I resigned from my job as Manager of an Assisted Living and was Nurse Manger. I went from being on salary to nothing. My pain is tolerable most days. I was officially diagnosed on November 6th of this year. My GP and Rhuemy both think I should apply for disability. Hard blow to the ego with 6 years of college behind me.

    Anyway what works for me, may not work for you. Fibro seems to affect everyone differently.

    1)Tender Point Massage Therapy every week. It is usually about a 2hr session. I can recommend if you get the right Massage Therapist that knows how to do Tender Point Massage it will help. My first session I was so tight in every muscle of my body, and he worked very dilegently.

    The other thing that I think might help, if the right therapist. Mine actually corrected the stress in my wrists from carpul tunnel and I can type again without my hands going numb. He could also tell which arm was my mouse arm, by a knot he found (I could feel it too)

    2) Medications I take:
    Lyrica (Pain)
    Ultram (Pain)
    Mirapex (Myoclonic Jerks)
    Rantidine (Acid Reflux)
    Relpax (for migraines)

    3) Relax, relax, relax. No, you cannot stop your life, but even if you have five minutes alone, close your eyes, relax your body and imagine being somewhere else. (Sounds silly but somedays with 3 teenage boys in the house, that is all I get)

    I wish you all the best and hope you can get some relief.
    Take care and Kitten hugs,
    Blessed Be,
    Laurie
  12. Redshadow

    Redshadow New Member

    Hey Nathan,
    This is what helped me, I went from overall electrical body pain that had me trembling uncontrollably to pain here and there. I get aches and pains everywhere including like someone is pinching my neck! So weird. These drugs listed below might not work for you but these are what helped me with the pain ask your Doc about them:
    Nortriptolyne (for FM pain worked for me but had to get off because of really bad side effects)
    Neurontin (for FM pain Great stuff and it's a anti-seizure medication)
    Zoloft (for serotin balance when using Nortriptolyne or Neurontin)
    Acupunture (for FM pain I did four sessions and it did help when I developed weird chronic hip and lowerback pain)

    Also ask the Doc to write you a prescription for a painkiller and use it when it gets to be unbearable, I use it sometimes just to take the edge off as you and I know the pain is so horribly intense even strong painkillers just take a little edge off but to me it's worth it.

    Nathan keep strong in the faith,
    God is with you I think He is testing us with this illness.
    I know sometimes it's like I can't take it anymore Lord, I just place it all in His hands. Easier said than done but it's the only way.
    God Bless you (((soft huggies)))
    Redshadow

  13. Natedagw821

    Natedagw821 New Member

    Well,

    I will definitly talk to my new doctor about the medications that you have mentioned. Is there any supplements that you take for fatigue?

    One of you mentioned something about an antidepressant: I cant take those because of my psycosis. Basically it works like this: Dopeamine is too high in my brain; thats why I take an antipsycotic. Ya see, if i took an antidepressant it would raise my serotonine level, hence affecting the dopamine level as well. That's what my shrink told me. They are two different chemicals, yet they relate to each other.

    I'm thinking about going to the fibro and fatigue center in feb of 07. I've heard some really good things about that place. I'm really lucky because I live near detroit, MI and the center is about 1hr from where I live.

    From all the info you have all provided, I'll probably try the neurontin. I've heard some really good things about that drug. Also, I'll be at the YMCA in the swimming pool to relax. So it will all work out.

    One of you mentioned about having faith in God. This is the strongest area of my life. I know what you are thinking though: "How can this kid have a relationship with God, when he talks about dying all the time?"
    Well, I struggle just like the rest of you...
    Let me get back to what I was saying though. I have a very deep relationship with God. Ya see, I was raised in the Catholic church and I have a very devout faith. I guess it stems from the fact that, before I was born, my dad was in Rome studying at the Vatican to become a priest. Unfortunately, my dad was too homesick to go through with it, so he came home, married my mom, and here I am today.
    The stories my dad has told me about Rome have really strengthened my faith. For example, the main priest in the seminary had something called the "stigmata." The priest's name was Brother Gino. I've seen pictures of his hands and everything, so its not a joke.
    For those of you who do not know what the stigmata is, its where Christ's passion manifests itself in someone. That's just one story of many he has told me.
    So anyway, to get back on point i have a very strong relationship with our Lord just like most of you do.
    ;)

    Anyway, I'm sorry to have gone WAYYYYYYYY off topic, but I felt compelled to share some stories with you all.
    We all need God in our lives, especially since we all suffer.

    Your responses have made me feel a lot better. I guess I'm being a lil selfish though. It's not about me. It's about all of us. We are all in this together and THAT is what makes all the difference in the world!

    Thank you all,

    Nathan
  14. lenasvn

    lenasvn New Member

    Rheumatoid factor doesn't have to be RA. I have Rf factor in my blood, but no RA. It seem to be found in people with FM/ CFS with no causative factor. It is a sign of chronic inflammation. When my EBV was active my Rf factor was elevated too. My rheumy have verified it "has no cause", meaning no chronic systemic inflammation.

    It can be many other things too, but the doc shouldn't assume RA and talk about wheel chairs! That's is unprofessional.

    If a doc finds Rf factor he is supposed to send you off to a Rheumy and find out why you have it. Is there any history of Rheumatoid artritis in the family?

    Either way, just had to throw in my ywo cents!!

  15. Natedagw821

    Natedagw821 New Member

    Hello there,

    Just to let you know when I was diagnosed with RA back in 2002 they DID send me to a rheumy. He said that I had a false positive and he also said that he could not find anything ORGANICLY wrong with me. So, I don't know.

    Just to let you all know, I stopped taking the lyrica just to see if the pain would go away in my arms. The doc put me on lyrica on nov. 1st...I went back to him on nov 9 complaining of right arm pain and wrist pain. THAT was back on the 9th. It's over two weeks later and the pain is still there. I quit taking the lyrica about 3 days ago.
    Whats weird is that my arm has improved just a LITTLE bit. I can TYPE now without being in pain! So, I don't know. *heres hopin*

    You've all been such a blessing. Thank you all!

    God bless you,

    Nathan
  16. Cinlou

    Cinlou New Member

    I am so sorry about all your problems, you are so young....My prayers go out to you....

    I was wondering if you have been checked for heavy metal....just a thought....toxins can have many symptoms...

    Things that work for me are Elavil, Trazodone, Flexril...for sleep, which is supposed to help with pain..
    I take Mobic (anti inflamatory) for Degenerative Disc Disease....
    I sleep with a wrist guard when the carpal tunnel flares up....Had surgery on left about 10 years ago....it helped. Now the right is worse....

    Hope you find relief very soon!
    Take care,
    Cindy

  17. angellwolffe

    angellwolffe New Member

    I to have ct in both wrists. I have fm. one of the dominant symptoms was the all over shocking pains and the ct. My docs put me on nurontin (gabapentin) for the shocking pain and spasms. Another doc put me on celebrex for the aching in the joints, both together have helped the ct and i don't have the shocking pains and very few muscle spams.

    There are simple wrist exercises you can to to help the ct.

    I also take 1000 % dose of vit B6 and B12 everyday, a multivitamin with extra iron, magnesium and calcium and d-ribose supplement everyday. I also take between 2400 3600 mg guaifenesin a day.

    Most of my aches and cramps have subsided and the ct is under control.


    I would discuss possibilities with my doc before ever thinking that its over and you should succumb to a wheelchair.

    I don't know how much of any of these may help but its a shot and one may work some for you.

    Angell

    [This Message was Edited on 11/26/2006]
  18. chloeuk

    chloeuk New Member

    It was me who suggested gabapentin, I was in terrible pain the day before I started and yes it has taken all of my fm pain away..unfortunately I hurt my back so in pain from that...but that feels like normal pain not like the hell pain I got from fms...try it you never know.

    Good luck...let us know how you get on
  19. Redshadow

    Redshadow New Member

    Hey Nathan,
    You let us know what happens at the Fibro center. I'm sorry I can't give you help in any of your other problems, carpal tunnel syndrome must be terrible!!! That sucks!!! I hope you find some type of medicine to help you. I understand being young, the Doctors I've seen doubted me until they actually examined me and saw abnormal physical responses and blood work. It frustrates me to no end. But I am lucky that my husband and mother refuse to give up and keep taking me to new Doctors. I am very blessed in that, because I would have given up a long time ago. That's neat about the stories in Rome! I'm a Protestant but I went to a Catholic high school and know about Padre Pio and a bit of the Catholic way and I actually met who also happened to be my favorite nun (Sister Philip Joseph) that knew the priest who was involved in the real life exorcists incident. Creepy stuff!!

    I also understand the parts about wanting to die even though you believe in Jesus Christ. You just want the pain to stop and sometimes you wonder how much more can ya take. Every time I get close to that dark deep pit I remember God's commandment of not giving in. Nathan I will put you in my prayers and I will do my darndest to remember your name. Sometimes when I start I just can't remember, darn brain fog. You know you are right about being a man, I would imagine would be harder to deal with an illness since your supposed to be "the caretaker". I can't understand what that feels like and I'm sorry. Oh and the only advice I have on fatigue is rest, sleep, rest and sleep. It's the only thing that's helped me and I've done a lot of the supplements, reiki, acupuncture, physical therapy and electrical pulse treatment. The only things that really work for me is the rest/neurotin/pain killer/God. Lol, but all of that is true. Time to go to sleep!

    Whoops one more thing chloeuk mentioned gabapentin, it's the generic form of neurotin and actually I am taking gabapentin I just call it nuerotin since my Doc calls it that. Great stuff, and no I'm not one of their representatives LOL!!
    (((soft huggies)))

    Prickles above has awesome advice stay tuned...
    she's cool :^) [This Message was Edited on 11/27/2006]
  20. aquabugs

    aquabugs New Member

    Hi Nathan

    I'm sorry to hear about all the suffering you are going through at your young age. You are only about the age of my sons.

    I won't address your FM as that has already been done very well here.

    I also have carpal tunnel syndrome, very severely in both hands. It started when I was about your age, also in college with a very heavy schedule. I was taking two tough classes - genetics and another advanced biology- when it struck. I started dropping my pen and having a lot of trouble writing. At night I would have severe pain in both arms that kept me from sleeping. That was 20-some years ago.

    If you haven't already, get yourself some good wrist guards (you can get them at Walmart or any good pharmacy). WEAR them all the time while this is flaring up. It's very important to rest your wrists by keeping them in a neutral position (that's what the guards do).
    Even with medication, the guards are important.

    You shouldn't have to worry about not being able to do your computer work. You have enough problems.

    Rest your wrists, use any ergonomic devices such as wrist rests, etc while computing and WEAR those wrist guards even when at the computer until the CTS settles down.

    I have CTS very severely in both hands and have been advised to have surgery. I may opt to do that soon as mine is now worse then ever. But anytime it flares, I go back to the wrist guards and they work to calm the pain and numbness.

    Good luck Nathan and I hope you are feeling better soon.

    HUGS
    Sylvia