Beca
03-01-2004, 04:55 PM
Hi everyone.
My name is Beca. I was diagnosed with FMS a week and a half ago. I have burning pain in my neck and shoulders. I went through 4 weeks of something called "Physical Medicine" which is nothing like physical therapy. It's a machine they hook you up to that kinda zaps your muscles, and doesn't actually involve excercise. It didn't help at all. Now my neurologist wants to try doing trigger-point injections. Does anybody know what they are and how they feel? Do I need to take the rest of the day of to rest?
I have found a really good testamony of a lady named Dawn. I found her testamony on Web MD. I put it on my website because it seems to perfectly describe what I go through, and maybe other people with FMS go through. If you need help explaining it in a way that is going to get someone's empathy, send them her letter!
I am on Flexeril at night for sleeping. I'm on 40 mgs of Prozac, and 25 mgs of Vioxx. I also take vicodin about twice a week when I start to feel a migraine come on or if I've done something that has really hurt me. I would love to have any advise of what has helped any of you guys. I am doing yoga classes once a week and doing the stretches at home by myself. I've also been doing guided relaxation but that hasn't seem to help much either. Has it helped any of you?
I'm new at the diagnosis but I've been in pain since I was 15 years old. I have 6 vertabrae that are suposed to be conected to ribs but they are not. They are called "non rib-bearing vertabrae". That means all my muscles have grown in wrong. The ribs that are suposed to be holding me up are not conected to anything so they are just floating there. Basically I'm being supported by my youth. I know a lot of times FMS is caused by trauma but mine is caused by incorrect growth. I was anerixic as a kid and that made my ribs and muscles grow in wrong. The doc says that it's a formitive disorder, not congenital.
So since I'm new please give me all the advise you can. I am in constant pain like all of you and I know there are no easy answers but maybe there's something else I haven't tried.
Thank you!
Beca
My name is Beca. I was diagnosed with FMS a week and a half ago. I have burning pain in my neck and shoulders. I went through 4 weeks of something called "Physical Medicine" which is nothing like physical therapy. It's a machine they hook you up to that kinda zaps your muscles, and doesn't actually involve excercise. It didn't help at all. Now my neurologist wants to try doing trigger-point injections. Does anybody know what they are and how they feel? Do I need to take the rest of the day of to rest?
I have found a really good testamony of a lady named Dawn. I found her testamony on Web MD. I put it on my website because it seems to perfectly describe what I go through, and maybe other people with FMS go through. If you need help explaining it in a way that is going to get someone's empathy, send them her letter!
I am on Flexeril at night for sleeping. I'm on 40 mgs of Prozac, and 25 mgs of Vioxx. I also take vicodin about twice a week when I start to feel a migraine come on or if I've done something that has really hurt me. I would love to have any advise of what has helped any of you guys. I am doing yoga classes once a week and doing the stretches at home by myself. I've also been doing guided relaxation but that hasn't seem to help much either. Has it helped any of you?
I'm new at the diagnosis but I've been in pain since I was 15 years old. I have 6 vertabrae that are suposed to be conected to ribs but they are not. They are called "non rib-bearing vertabrae". That means all my muscles have grown in wrong. The ribs that are suposed to be holding me up are not conected to anything so they are just floating there. Basically I'm being supported by my youth. I know a lot of times FMS is caused by trauma but mine is caused by incorrect growth. I was anerixic as a kid and that made my ribs and muscles grow in wrong. The doc says that it's a formitive disorder, not congenital.
So since I'm new please give me all the advise you can. I am in constant pain like all of you and I know there are no easy answers but maybe there's something else I haven't tried.
Thank you!
Beca
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Beca
03-02-2004, 05:06 PM
Okay, would somebody write me back? 50 views and zero replies?
come on! :nono:
come on! :nono:
Marie55
03-02-2004, 06:24 PM
Please do not be discouraged by lack of responses. You have a totally different set of problems than the usual fibromyalgia patient. With all the problems you have I would have no advice, it is out of my league.
As far as the fibromyalgia goes, I find that staying active, plenty of rest, exercise, back massages, vibrator, vibrating chair pad work well. I am not on any meds.
I have had fibromyalgia for 50 years. It is something to develop a positive attitude, acceptance and keep on living your life regardless of the misery it causes. You will hurt at home so might as well live life to the fullest to best of ability.
As far as the fibromyalgia goes, I find that staying active, plenty of rest, exercise, back massages, vibrator, vibrating chair pad work well. I am not on any meds.
I have had fibromyalgia for 50 years. It is something to develop a positive attitude, acceptance and keep on living your life regardless of the misery it causes. You will hurt at home so might as well live life to the fullest to best of ability.
Beca
03-02-2004, 06:44 PM
[QUOTE=Marie55]Please do not be discouraged by lack of responses. You have a totally different set of problems than the usual fibromyalgia patient. With all the problems you have I would have no advice, it is out of my league."
What is normal?
and thank you for responding! :wave:
What is normal?
and thank you for responding! :wave:
rhody
03-03-2004, 11:44 PM
I write about this all the time. I had fibromyalgia symptoms. They are mostly gone now after I had my mercury-silver dental amalgams removed ten years ago. I get mild symptoms if I over-do it (with the exercise mostly).
I was told to not run more than a hundred yards by a doctor in 1978, and I now run nearly 20 miles a week. My muscle shoulder/neck pains, lower back pains, urinary problems, chest pain, gum disease, and loose teeth are a thing of the past. I didn't have TMJ symptoms, but some people I read claim those TMJ symptoms went away after they had these toxic fillings removed. The only thing I might of have had with the jaws, is if I pressed my fingers at the joint by the ears, I seem to remember it felt like a sharp bruise. But I don't recall any more than that with jaw related disorders.
The problems that various people discovered with their fillings, are still controversial. I believe it's because the associations that could be financially damaged the most and others seem to say it's safe (with no proof), while many people claim to be cured after the removal of these amalgams (I'm one of those). Mercury is a hot topic these days, and I think we'll constantly here more of how crazy it is to place this extremely poisonous material in our mouths.
This may or may not apply to you, but I thought that I'd mention it. I never would have believed those gray-black things in my teeth would have created all of my health problems. But when my tooth broke and exposed one dental amalgam, my pains "went through the roof". I then had the link, and suddenly became a believer.
I'd be glad to describe more of these pains, and cure if anyone asks. I had these nagging health problems for decades. I had to go outside of mainstream medicine....
I was told to not run more than a hundred yards by a doctor in 1978, and I now run nearly 20 miles a week. My muscle shoulder/neck pains, lower back pains, urinary problems, chest pain, gum disease, and loose teeth are a thing of the past. I didn't have TMJ symptoms, but some people I read claim those TMJ symptoms went away after they had these toxic fillings removed. The only thing I might of have had with the jaws, is if I pressed my fingers at the joint by the ears, I seem to remember it felt like a sharp bruise. But I don't recall any more than that with jaw related disorders.
The problems that various people discovered with their fillings, are still controversial. I believe it's because the associations that could be financially damaged the most and others seem to say it's safe (with no proof), while many people claim to be cured after the removal of these amalgams (I'm one of those). Mercury is a hot topic these days, and I think we'll constantly here more of how crazy it is to place this extremely poisonous material in our mouths.
This may or may not apply to you, but I thought that I'd mention it. I never would have believed those gray-black things in my teeth would have created all of my health problems. But when my tooth broke and exposed one dental amalgam, my pains "went through the roof". I then had the link, and suddenly became a believer.
I'd be glad to describe more of these pains, and cure if anyone asks. I had these nagging health problems for decades. I had to go outside of mainstream medicine....
Beca
03-05-2004, 02:16 PM
I don't know if the Vioxx helps or not. I did slack off a week to see if I felt a difference and I did have terrible pain that week. I found I took more Vicodin that week than usual, but that's not so bad! Oh, what I dream life would be if I had narcodics to take everyday like you!!! I've heard this same story from about 4 people now, so I found a neurologist here in Dallas that perscribes narcodics to FMS patients. However, I have to wait until May 20th to see him because he's in France right now (ooh la la!)
I am no more bendable than you probably! I am taking yoga classes and I can't even get my arms to twist right. Of course that's probably because all my problems are around my shoulder blades so it's all pretty tight in through there.
Thank you for the encouragement! I may try to find a Pain Management Specialist that can see me before May.
Beca
I am no more bendable than you probably! I am taking yoga classes and I can't even get my arms to twist right. Of course that's probably because all my problems are around my shoulder blades so it's all pretty tight in through there.
Thank you for the encouragement! I may try to find a Pain Management Specialist that can see me before May.
Beca
Beca
03-05-2004, 02:20 PM
Very interesting. I had lots of dental work done last year. I will call my dentist and ask if any of it contained mercury. Do they still do that? How stupid!
Beca :eek:
Beca :eek:
mere
03-05-2004, 03:59 PM
Hi Beca:
I have had FMS for about 17 years, perhaps longer. I was diagnosed three months ago when I tested positive for the tender point spots. There have been times that the tender spots were not active but I would have tendonitis with impingement in my shoulders or debilitating pain in my hips, etc. I have had many courses of cortisone injections in my shoulders, hips and wrist over the years and have suffered without a diagnosis for a long time - although I have read that this is quite common.
Usually my inflammatory markers (sed rate, c reactive protein) are high, although RA and lupus have been ruled out. I also get peripheral edema from time to time and go through periods where I will loose lots of weight. Migraines have always been a problem but I have had very good results with a high doseage of Verapamil (calcium channel blocker) daily. This has been an excellent preventative for me.
I suffer in my neck, shoulders, chest wall, wrists, hands, hips, back and feet. Some days everything hurts, other days, just a couple of sites.
I will be seeing a rheumatologist that specializes in FMS and lupus next week, so my regimin may change. But for now, I am doing physical therapy with stretch and hold, etc. For medications, I take ambien for sleep, verapamil for migraine and lortab for pain.
Antiflammatories do not work for my pain. They do mess up my gi tract. I had a terrible reaction to viox and vomited blood... never again will I take them. Muscle relaxents like flexeril give me an allergic reaction and the tricyclic antidepressants I have tried either make me nervous and jumpy or sick to my stomach. The SSRI antidepressants make me jumpy and eliminate my sex drive (not acceptable!)
I don't know what is left to take - I am hoping that my new Rheum. will have some other ideas.
Excercise is suppose to be the best thing for FMS. Quite frankly, I sometimes find it very difficult to do with the pain. I know I am probably in a catch 22 situation and that I will need to be more diligent about the excercise.
I went into a terrible flare in November after a bad viral infection. I have improved somewhat since then, but still have pain and fatigue every day. Some days are much worse than others. On the bad days, the lortab is not too effective.
Hope you are having a good day. It is Friday.
Mere --
I have had FMS for about 17 years, perhaps longer. I was diagnosed three months ago when I tested positive for the tender point spots. There have been times that the tender spots were not active but I would have tendonitis with impingement in my shoulders or debilitating pain in my hips, etc. I have had many courses of cortisone injections in my shoulders, hips and wrist over the years and have suffered without a diagnosis for a long time - although I have read that this is quite common.
Usually my inflammatory markers (sed rate, c reactive protein) are high, although RA and lupus have been ruled out. I also get peripheral edema from time to time and go through periods where I will loose lots of weight. Migraines have always been a problem but I have had very good results with a high doseage of Verapamil (calcium channel blocker) daily. This has been an excellent preventative for me.
I suffer in my neck, shoulders, chest wall, wrists, hands, hips, back and feet. Some days everything hurts, other days, just a couple of sites.
I will be seeing a rheumatologist that specializes in FMS and lupus next week, so my regimin may change. But for now, I am doing physical therapy with stretch and hold, etc. For medications, I take ambien for sleep, verapamil for migraine and lortab for pain.
Antiflammatories do not work for my pain. They do mess up my gi tract. I had a terrible reaction to viox and vomited blood... never again will I take them. Muscle relaxents like flexeril give me an allergic reaction and the tricyclic antidepressants I have tried either make me nervous and jumpy or sick to my stomach. The SSRI antidepressants make me jumpy and eliminate my sex drive (not acceptable!)
I don't know what is left to take - I am hoping that my new Rheum. will have some other ideas.
Excercise is suppose to be the best thing for FMS. Quite frankly, I sometimes find it very difficult to do with the pain. I know I am probably in a catch 22 situation and that I will need to be more diligent about the excercise.
I went into a terrible flare in November after a bad viral infection. I have improved somewhat since then, but still have pain and fatigue every day. Some days are much worse than others. On the bad days, the lortab is not too effective.
Hope you are having a good day. It is Friday.
Mere --
rhody
03-05-2004, 09:22 PM
Hi Beca,
It's interesting that you ask if the fillings contain mercury. If they are typical "silver fillings", then they contain approximately 50% mercury. These constantly leak mercury and the body accumulates this mercury over the years.
With this controversy, there are many that deny that these fillings could cause people pain and suffering. But without discussing that issue, we know a couple of facts. These "silver fillings" contain mercury. They leak constantly. And they accumulate all over the body, including the brain. One of my biggest gripes with the pro-amalgam crowd, is their continual misrepresentation of the fact that mercury is in these toxic fillings. All through college, I knew the dangers of mercury, but I had no idea that my fillings were full of that extremely dangerous metal until late in life. These dentists should be calling them something like "mercury fillings" or "mercury-silver dental amalgams". Calling them "silver fillings" just keeps the "lie" going and going. We are just not informed....
It's hard to say how much of these fillings affect you, but some of us have gotten well, after the removal of these poisons. By going outside of mainstream medicine, I concentrated on "natural" cure, which means in addition to the removal of toxins, I changed to a healthy diet of mostly non-processed foods. I found that herbal teas that I made myself a real "life-saver". I'm still fascinated to this day, how herbs can make me feel so good.
To heal from these fibromyalgia symptoms, the diet, herbs, and limited exercise were my first steps. It was later that I learned that my fillings somehow were causing me all this pain. It's a matter of embracing natural health care in steps. I rarely take any "orthodox" medications. Over the years, with the positive results I've gotten outside traditional medical care, more and more I just don't trust the doctors approach with "there's nothing we can do", or "here's a prescription".
It's interesting that you ask if the fillings contain mercury. If they are typical "silver fillings", then they contain approximately 50% mercury. These constantly leak mercury and the body accumulates this mercury over the years.
With this controversy, there are many that deny that these fillings could cause people pain and suffering. But without discussing that issue, we know a couple of facts. These "silver fillings" contain mercury. They leak constantly. And they accumulate all over the body, including the brain. One of my biggest gripes with the pro-amalgam crowd, is their continual misrepresentation of the fact that mercury is in these toxic fillings. All through college, I knew the dangers of mercury, but I had no idea that my fillings were full of that extremely dangerous metal until late in life. These dentists should be calling them something like "mercury fillings" or "mercury-silver dental amalgams". Calling them "silver fillings" just keeps the "lie" going and going. We are just not informed....
It's hard to say how much of these fillings affect you, but some of us have gotten well, after the removal of these poisons. By going outside of mainstream medicine, I concentrated on "natural" cure, which means in addition to the removal of toxins, I changed to a healthy diet of mostly non-processed foods. I found that herbal teas that I made myself a real "life-saver". I'm still fascinated to this day, how herbs can make me feel so good.
To heal from these fibromyalgia symptoms, the diet, herbs, and limited exercise were my first steps. It was later that I learned that my fillings somehow were causing me all this pain. It's a matter of embracing natural health care in steps. I rarely take any "orthodox" medications. Over the years, with the positive results I've gotten outside traditional medical care, more and more I just don't trust the doctors approach with "there's nothing we can do", or "here's a prescription".
librarylady13
03-06-2004, 12:46 AM
Hi Beca,
I have been struggling with the pain of fibro too. My rheumatologist has finally gotten me on a medication routine that has really been helpful to me. I take Ultracet every 8 hours around the clock and this really controlls my pain. It is the best thing I have found so far. I also take Miripex for restless leg syndrome, Restoril every night for sleep and have just started Provigil in the mornings to help with the fatigue. I'm not so sure about the Provigil. It really has helped restore my energy, but I have found that I am biting my tongue and I have cut it back to 100 mgms. If I continue to bite my tongue, I may have to stop it. Anyway, I just wanted to let you know that there is help out there. I was on Vioxx at one time and it really didn't do much for me. Ultracet has been a Godsend. You may want to talk to your doctor about it.
Debbie
I have been struggling with the pain of fibro too. My rheumatologist has finally gotten me on a medication routine that has really been helpful to me. I take Ultracet every 8 hours around the clock and this really controlls my pain. It is the best thing I have found so far. I also take Miripex for restless leg syndrome, Restoril every night for sleep and have just started Provigil in the mornings to help with the fatigue. I'm not so sure about the Provigil. It really has helped restore my energy, but I have found that I am biting my tongue and I have cut it back to 100 mgms. If I continue to bite my tongue, I may have to stop it. Anyway, I just wanted to let you know that there is help out there. I was on Vioxx at one time and it really didn't do much for me. Ultracet has been a Godsend. You may want to talk to your doctor about it.
Debbie
Beca
03-09-2004, 03:37 PM
"Nothing has helped me except for good old narcotics ; Duragesic patches and morphine for b/t pain and I do my own TrP injections and that helps alot except if I cannot reach a spot. Course I am 51 so I am no longer as bendable
I had this for 2 yrs before I said " No more" and went to find out what was up. You do not have to suffer......if not the first doctor to help you, find another!
Meredith"
Hey Meredith and everybody,
I just got back from getting trigger point injections.
They hurt like the devil, not the injections but the needles. There's
nothing worse than getting a shot in the most tender place on your
back, except getting 4 of them.
But right now I am so mad I could just scream. I asked the doc about
Oxycontin because "the shrimp" (a poster on another board) said he
takes 20 mgs monring and night and he hasn't had any FMS pain in 2
years. The doctor had the audacity to say that it's for people with
servere pain and that I might get adicted to it like Rush Limbaugh.
Rush was taking dozens of pills a day that were not perscribed to him
and he had no condition! I am only talking about 2 pills a day, for a
painful disease, and hoping it would get me off the other 4 I take
that don't work. How am I suposed to turn into Rush Limbaugh on just
2 pills a day? And what does she think I have? A bruise? When I say
constant headache what does she think I mean? All this crying is
making my head throb. This sucks.
I had this for 2 yrs before I said " No more" and went to find out what was up. You do not have to suffer......if not the first doctor to help you, find another!
Meredith"
Hey Meredith and everybody,
I just got back from getting trigger point injections.
They hurt like the devil, not the injections but the needles. There's
nothing worse than getting a shot in the most tender place on your
back, except getting 4 of them.
But right now I am so mad I could just scream. I asked the doc about
Oxycontin because "the shrimp" (a poster on another board) said he
takes 20 mgs monring and night and he hasn't had any FMS pain in 2
years. The doctor had the audacity to say that it's for people with
servere pain and that I might get adicted to it like Rush Limbaugh.
Rush was taking dozens of pills a day that were not perscribed to him
and he had no condition! I am only talking about 2 pills a day, for a
painful disease, and hoping it would get me off the other 4 I take
that don't work. How am I suposed to turn into Rush Limbaugh on just
2 pills a day? And what does she think I have? A bruise? When I say
constant headache what does she think I mean? All this crying is
making my head throb. This sucks.
musicgirl00
03-09-2004, 05:15 PM
This is going to sound a little bit strange but something that really helped me a lot was GATORADE!!! I dont know what it did. But i drink it religiously now and i still have pain, but not nearly as much.
Its worth a try, and good luck.
Its worth a try, and good luck.