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    Old 03-12-2004, 02:43 PM   #1
    builder
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    Can Fibro completely disable you?

    Mine is getting worse to the point where pain medication does not work. Vicidin use to be a lifesaver, but not anymore. I have to double the dose to get minimal relief. I am going to try HGH next. Its to the point where my legs from the knees down are constanly hurting with a burning sensation. And complete exhaustion. if I do any kinfd of physical work I lay down and can't move. Anyone hear of any new treatment or medicine that helps Fibro. I've Lexipro& Ambien to help store serotonin according to my doctor, but that doesn't seem to work. been to 3 doctors already. Internist. Rheumatologist and Neurologist. Next is the EGM test.

     
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    Old 03-13-2004, 11:10 AM   #2
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    Re: Can Fibro completely disable you?

    When I was diagnosed with Fibro, they told me it would never cripple me like arthritis does, but it would make me think it was going to. The only way I would be crippled was if I gave in to it, sat around, did not exercise, etc. and ended up crippling myself due to lack of activity.

    Since I hurt regardless of what I am doing, I go ahead and do what I want to hurt and all. I plan on "living life" and not sit around. Yeah, I move slower at times, but I am going to enjoy life.

     
    Old 03-14-2004, 05:33 PM   #3
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    Re: Can Fibro completely disable you?

    Quote:
    Originally Posted by rstarre
    Mine is getting worse to the point where pain medication does not work. Vicidin use to be a lifesaver, but not anymore. I have to double the dose to get minimal relief. I am going to try HGH next. Its to the point where my legs from the knees down are constanly hurting with a burning sensation. And complete exhaustion. if I do any kinfd of physical work I lay down and can't move. Anyone hear of any new treatment or medicine that helps Fibro. I've Lexipro& Ambien to help store serotonin according to my doctor, but that doesn't seem to work. been to 3 doctors already. Internist. Rheumatologist and Neurologist. Next is the EGM test.

    Hi, so sorry to hear your pain is getting worse. Im dealing with fibro, degenerative disc disease plus abdominal adhesions due to several surgeries. Quite painful indeed!! I do think, that even tho many don't want to qualify it as a disabling disease or syndrome, that it is quite disabling to us who are going thru this.

    Oh, plus it comes with so many other symptoms that it's next to impossible to keep up with things and wonder if new symptoms are related to the fibro or SOMETHING else.

    I went to a bed and breakfast this weekend (Austin ) cause i HAD to get away for a few days. Am my parents caretakers as well and theyre not well either. Have to take care of all their finances, doctor appts, meds, refills plus ANY other thing that comes up. Went alone cause hubby could not get away and all i was going to do was sleep and rest anyway. Thing is, on the way home,my fibro fog acted up and for a few minutes i couldnt even figure the way home or if i was on the right road or not. I just couldnt remember if it was 35 south or 35 north i was suppose to be on. Ive traveled that route for the last 6 yrs, (son lives in austin). I had to stop, gather myself, call my hubby and ask him what i was suppose to do. I felt so foolish and sooo scared. I couldnt for the life of me remember what route i was suppose to be on. It's not the first time its happened, just that when its happened its been minor things, at home, ya know fibro fog. This was scary tho. I also felt extremely ill, still very tired and shaky inside the entire trip. I came to the conclusion i shouldnt be making the trip alone anymore. THat is a disabling feeling. I cried half the way home. The 3 hour drive home exhausted me. Now i think i need two more days just to recuperate from the drive. LOL. Anyways hope you have a good day dear. I have ordered some nutritional products to see if they help, i hope they do.
    Jen

     
    Old 03-15-2004, 05:38 AM   #4
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    Re: Can Fibro completely disable you?

    Yes! Fibro CAN be disabling. In 1980 the AMA added fibromyalgia as a real and very disabling disease. I have had fibro for only 3 years now. But I have a very severe case. I am already on fenentyl patches that give me 24/7 narcotic release, however right now I am still in great pain and mostly bed ridden. My doctor believes my gallbladder is causing the pain to be worse and he wants to take it out. Until then, he refuses to up my meds. I am currently trying to collect Social Security and have been waiting for 2 years. SS is a finacky thing. It all depends on what exactly you and your doctor tell them. Some people get in right away, others with even more wrong with them have to suffer the lengthy appeals process. I have an attourney helping me and I'm hoping to hear soon, as I've ran myself up into debt.

    I have debilitating pain, muscle spasms, muscle twitches, migraines, light, sound and vibration sensitivity. I'm constantly fatigued and have no restorative sleep. In addition I have Renauds (spelling?), Irritable Bowl Syndrom, Irritable Bladder syndrom, all common additions to fibro. Most I know are not as bad as I am, but I do know a two people who are in wheel chairs because of fibro.

    I do not believe you can simply think your way better. Fibro, however, though it is not in your head, is often made worse by depression. It can also cause depression and thus the never ending cycle. My doctor, who has treated lots of auto-immune disorded women believes if one is not careful and treated correctly, that fibro can turn into lupus and MS. He believes auto-immune disorder begets auto-immune disorder. If you don't stay positive, keep trying, your immune system can weaken further, and open you up to further complications. I have already seen this as sense I was diagnosed with FMS I now have MPS, Hoshimoto's thyroid syndrom and interstitial cystitis.

    Unfortunately, if you are disabled by fibro, I think you feel you are even more alone then those with who aren't. Some don't feel you can become disabled, doctors aren't ready or capable of treating mild fibro, let alone a full blown severe case of it. So we face even more scrutiny and heart ache, and critizim from "Just smile and pull yourself up from your boot straps" which personally makes me want to wretch.

    You must be even more diligent in watching research, trying new things, and searching for a knowledgeabl doctor. A pain management specialist is a MUST.

    I hope I've helped.

     
    Old 03-15-2004, 08:35 AM   #5
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    Re: Can Fibro completely disable you?

    What about a strange burning sensation? Do you get that also? My problem is a Rheumotologist told me I don't have Fibro and a Neurologist told me I had it. He put me on Lexapro and Ambien to try and save serotonin in my body. He did mention the lack of deep serotoni producing sleep in Fibro patients. Lexapro and other SSRI drugs are suppose to correct the chemical imbalance. He also bleieves Fibro is caused by this chemical imbalance in the body that causes adrenilin from building up in muscle tissue and not being used properly by the body. Don't know about that theory, but since no one else has come up with an cause for Fibro, it kind of makes sense. Problem with the medicine he gave me, I'm in a fog most the day. Celexa stop the pain when I tried it, but once again, I was in a daze most of the time.
    Quote:
    Originally Posted by tmbr1592
    Yes! Fibro CAN be disabling. In 1980 the AMA added fibromyalgia as a real and very disabling disease. I have had fibro for only 3 years now. But I have a very severe case. I am already on fenentyl patches that give me 24/7 narcotic release, however right now I am still in great pain and mostly bed ridden. My doctor believes my gallbladder is causing the pain to be worse and he wants to take it out. Until then, he refuses to up my meds. I am currently trying to collect Social Security and have been waiting for 2 years. SS is a finacky thing. It all depends on what exactly you and your doctor tell them. Some people get in right away, others with even more wrong with them have to suffer the lengthy appeals process. I have an attourney helping me and I'm hoping to hear soon, as I've ran myself up into debt.

    I have debilitating pain, muscle spasms, muscle twitches, migraines, light, sound and vibration sensitivity. I'm constantly fatigued and have no restorative sleep. In addition I have Renauds (spelling?), Irritable Bowl Syndrom, Irritable Bladder syndrom, all common additions to fibro. Most I know are not as bad as I am, but I do know a two people who are in wheel chairs because of fibro.

    I do not believe you can simply think your way better. Fibro, however, though it is not in your head, is often made worse by depression. It can also cause depression and thus the never ending cycle. My doctor, who has treated lots of auto-immune disorded women believes if one is not careful and treated correctly, that fibro can turn into lupus and MS. He believes auto-immune disorder begets auto-immune disorder. If you don't stay positive, keep trying, your immune system can weaken further, and open you up to further complications. I have already seen this as sense I was diagnosed with FMS I now have MPS, Hoshimoto's thyroid syndrom and interstitial cystitis.

    Unfortunately, if you are disabled by fibro, I think you feel you are even more alone then those with who aren't. Some don't feel you can become disabled, doctors aren't ready or capable of treating mild fibro, let alone a full blown severe case of it. So we face even more scrutiny and heart ache, and critizim from "Just smile and pull yourself up from your boot straps" which personally makes me want to wretch.

    You must be even more diligent in watching research, trying new things, and searching for a knowledgeabl doctor. A pain management specialist is a MUST.

    I hope I've helped.

     
    Old 03-15-2004, 08:56 PM   #6
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    Re: Can Fibro completely disable you?

    Everyone please be sure to have a full thyroid panel done...and that would include FT3 and FT4. FM symptoms are identical to hypothyroidism symptoms and many people are misdiagnosed with FM and suffer needlessly for years. And don't just settle for your doc saying your thyroid tests are NORMAL. Get a copy of them, and be sure your TSH is as close to "1" as it can get, and be sure the Free T3 and Free T4's are done, not plain T3 and T4. I was so sick I had to crawl to the bathroom on my hands and knees and I was diagnosed with FM by a neurologist. I took it upon myself to research my symptoms and discovered my thyroid might be undertreated and it was. Now I'm a new person, a "normal" person with energy to burn and no pain. Please...see an endoc and INSIST on the two tests, Free T3 and Free T4.

    Marilyn

    Quote:
    Originally Posted by rstarre
    What about a strange burning sensation? Do you get that also? My problem is a Rheumotologist told me I don't have Fibro and a Neurologist told me I had it. He put me on Lexapro and Ambien to try and save serotonin in my body. He did mention the lack of deep serotoni producing sleep in Fibro patients. Lexapro and other SSRI drugs are suppose to correct the chemical imbalance. He also bleieves Fibro is caused by this chemical imbalance in the body that causes adrenilin from building up in muscle tissue and not being used properly by the body. Don't know about that theory, but since no one else has come up with an cause for Fibro, it kind of makes sense. Problem with the medicine he gave me, I'm in a fog most the day. Celexa stop the pain when I tried it, but once again, I was in a daze most of the time.

     
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