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Old 10-29-2003, 06:33 AM   #1
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sTaR_cHyLd HB User
Unhappy Fellow FMS suffers please respond!!! I need your help!!!

I was diagnosed with my fibro one week ago , but have been suffering over a year. I am finding a very hard time coping with the pain, and cannot seem to find anything that controls the pain. I am in pain 24/7 and it never ends. Any ideas of something that offers "constant" relief?? My boss is already threatening to release me from my job, due to me not functioning and thinking clearly due to the pain, I cannot afford to lose my job. I cry myself to sleep every night. Here is the list of meds I have tried, Elavil, Flexeril, Soma with and without codeine, Ultracet, Ultram, Darvocet, Lexapro, clanazoprine, Wellbutrin, Vicodin, Celebrex, Vioxx, Amitriptyline, Ambien, Naprosyn, Tylenol 8 hour and arthritis, and Percocet. Nothing is helping me sleep and with the pain? Any ideas of something that will help around the clock? My other problem is my husband is not being supportive at all, he is saying it is all in my head, and im just addicted to medicine. i tried to tell him that if he felt the pain I did he would understand. I just don't know where to go anymore, I go for two more MRI's today, as well as an appt with my fibro doctors, please help fellow suffers, Im open to all the suggestions you have.
Sincerely
Suffering in pain )=

 
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Old 10-29-2003, 07:01 AM   #2
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dayton HB User
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I really sympthasize with you. I'm in the exact same boat -- absolutely no support at home although I get the vicious comments!! He tells me I'm doctor shopping to get attention (and that's one of the milder ones!).

I've been diagnosed with rsd but still do not believe it because I have almost all of the fibro symptoms and a rheumatologist diagnosed me with "chronic and severe" fibro.. I do have the burning type pain but again, you can have that with fibro.

I've tried so many meds too, one sent my blood pressure to 167 over 143. thought i was having a heart attack!! scared me and doctor to death -- it was topomax. I've tried all the anti-depresants , ugh, flexeril, made me really spacey. parafon forte is supposed to help with muscle spasms but didn't really help a lot.

neurotin causes weight gain (another reason my husband is griping). it does help me with the burning pain right now and i take it with elavil and it will put you right out -- at least it did me.

keep in touch and let me know how you're doing. this ain't no fun is it???

 
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Old 10-29-2003, 03:03 PM   #3
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I've recently started taking klonapin at night and that helps me sleep a lot. Also, are you doing any kind of aerobic exercise? I know you don't feel like it, but if you can force yourself, I have found that to be more effective or as much so as the drugs, although I take the meds, too. I've had so many problems because my foot or knee would flare whenever I started to exercise, so I didn't exercise for a long time. Bad idea: now I have a herniated disk to add to my misery. But I have started physical therapy, and it is so great, because it's like having a personal trainer who knows how to work around the fibro. The PT place has a small warm water pool, so I do half my exercises there, and get strectched out really well, then do half in the gym. Easter Seals has warm water pools available to use if you have a prescription; my town also has about 10 other warm water pools for people like us. You are under so much stress with your family and work not being supportive and the exercise will alleviate the stress as well. There is a very good book about fibromyalgia put out by the arthritis foundation that maybe you could get some of your non-believers to read. There are also other good books out there; I have found many at the library. Also read the article posted above about depression and fibro. Don't let anyone tell you this is all in your head, or that you are trying to get attention. I wish people like that could experience just one day of what we go through every minute for what will probably be the rest of our lives. It is so overwhelming and scary. Maybe you could find a support group in your area so you could have some face to face support for what you are going through. (Maybe your husband could attend, too. As for your boss, can you get disability for a while until you can find some relief? My doctor wouldn't do it for me when I was having problems a few years ago, so I went to a psychiatrist and got temporary disability for stress and depression. It kind of hurt my pride, but it worked, and I was desperate. Now I'm on temporary disability for the herniated disk. It's amazing how differently you are treated when you have a "real" medical problem (meaning one that shows up on an MRI, apparently).I hope I gave you some ideas. I've been dealing with this for 30 years, so there's probably not much I haven't tried. One other thing, see if you can find a device called a theracane or a backnobber. It allows you to release trigger points on your own back, and you can also massage yourself with it. It's low-tech, but it is inexpensive, and it has made a really big difference for me. Finally, I can reach those spots myself instead of trying to direct a reluctant husband to massage the right spots...."a little to the left, no too far, too hard, not hard enough, a little longer please?")...no more! Best of luck to you. Know that you are not alone. And if your doctor can't or won't help you, find another doctor.
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Old 11-08-2003, 11:12 PM   #4
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Singers HB User
[SIZE=7][COLOR=DarkRed][FONT=Arial]

I have been reading a lot about Fibromyalgia lately because I have a good friend who suffers from it. I believe it would be good for everyone to have their thyroid tested because I have read about a Dr. who believes that many of the women who have Fibromyalgia also have a thyroid problem & that is what is making the Fibro worse. This Dr. has presented research papers on this in France & written articles about it here in the states. Might be something to have your Dr. check. Even if your thyroid tests are normal, this Dr. says that many women still have a thyroid problem and would benefit from medication. It pains me to read of all the medication being taken by Fibro sufferers and nothing helps them. I guess I can't tell you the Drs. name, (against the rules) but do a search on fibromyalgia & you might find the info. That's how I came across it.

 
Old 11-12-2003, 07:12 PM   #5
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Quote:
Originally Posted by Singers
[SIZE=7][COLOR=DarkRed][FONT=Arial]

I have been reading a lot about Fibromyalgia lately because I have a good friend who suffers from it. I believe it would be good for everyone to have their thyroid tested because I have read about a Dr. who believes that many of the women who have Fibromyalgia also have a thyroid problem & that is what is making the Fibro worse. This Dr. has presented research papers on this in France & written articles about it here in the states. Might be something to have your Dr. check. Even if your thyroid tests are normal, this Dr. says that many women still have a thyroid problem and would benefit from medication. It pains me to read of all the medication being taken by Fibro sufferers and nothing helps them. I guess I can't tell you the Drs. name, (against the rules) but do a search on fibromyalgia & you might find the info. That's how I came across it.
[FONT=Arial]
i have thyroid disease and yes i have all the aches and pains everyone has with fibro. it is all connected.....so please get your thyroid level checked...wouldn't hurt. thyroid meds may or may not help. they have helped me some.....but still not 100%.

 
Old 11-13-2003, 08:58 AM   #6
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I am also on antidepressants. You sound very depressed. They are used for pain and anxiety.
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Old 11-13-2003, 11:19 AM   #7
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Hi Dayton,
I am new to the boards here but had to reply to your post because I too have RSD as well as Fibromyalgia. Thankfully I have support at home as well as with my doctor but that does not help with the pain.

I have found through my online research and my own trails with these diseases that they often run hand and hand. They mirror one another and several people that I know have been diagnosed with both.

I have been on so many medications for my pain that the list could take up a four page essay on their own. One of the ones that I have found that works for me to help with sleep is actually a combination of trazadone and amitriptyline(Elavil).


Quote:
Originally Posted by dayton
I really sympthasize with you. I'm in the exact same boat -- absolutely no support at home although I get the vicious comments!! He tells me I'm doctor shopping to get attention (and that's one of the milder ones!).

I've been diagnosed with rsd but still do not believe it because I have almost all of the fibro symptoms and a rheumatologist diagnosed me with "chronic and severe" fibro.. I do have the burning type pain but again, you can have that with fibro.

I've tried so many meds too, one sent my blood pressure to 167 over 143. thought i was having a heart attack!! scared me and doctor to death -- it was topomax. I've tried all the anti-depresants , ugh, flexeril, made me really spacey. parafon forte is supposed to help with muscle spasms but didn't really help a lot.

neurotin causes weight gain (another reason my husband is griping). it does help me with the burning pain right now and i take it with elavil and it will put you right out -- at least it did me.

keep in touch and let me know how you're doing. this ain't no fun is it???

 
Old 11-16-2003, 09:38 PM   #8
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MysticChic HB User
Blood pressure could drop and/or be low, low thyroid, low blood sugar. Any of these can make you sleepy, spaced out. Of course not getting enough sleep is a problem for many. Pain Control. Klonopin is probably the must useful thing for me. For pain control, sometimes a combination of low dose medications are more effective than a single high dose.

alice

 
Old 11-21-2003, 08:57 PM   #9
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Cricket03 HB User
Re: Fellow FMS suffers please respond!!! I need your help!!!

Quote:
Originally Posted by MysticChic
Blood pressure could drop and/or be low, low thyroid, low blood sugar. Any of these can make you sleepy, spaced out. Of course not getting enough sleep is a problem for many. Pain Control. Klonopin is probably the must useful thing for me. For pain control, sometimes a combination of low dose medications are more effective than a single high dose.

alice
I'm new here, so please bear with me. I wasn't sure which forum to post on, so I just pick one.

I have been diagnosed (over serveral years time) with all of the following:
hypothyroidism
Mitral Valve Prolapse with dysautonomia
Fibromyalgia
Slight Hyatial Hernia
Slight G.E.R.*.
Chronic Fatigue Syndrome
Irritable Bowel Syndrome
Obstructive Sleep Apnea
Narcolepsy

I am mid-40's and female. I have been trying to work (a desk job), but back in January I had my Gall Bladder removed and have since been diagnosed with the last 4 problems. Some of these I probably have had for a while, but just finally found out what was wrong.

Sorry this is so long, but it's a long story. Anyway, I was wondering if anyone else has this same set of problems? And if anyone thinks I might could draw diablity? I would rather work if I can.

I am currently working and have been at the same place for 2 years, but it looks like it is going to close. I don't know whether to look for another job or see about disablity.

Wondering what to do..

 
Old 11-22-2003, 03:53 PM   #10
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Runtomuch HB User
Question Re: Fellow FMS suffers please respond!!! I need your help!!!

[QUOTE=Singers][SIZE=7][COLOR=DarkRed][FONT=Arial]

"...This Dr. has presented research papers on this in France & written articles about it here in the states. Might be something to have your Dr. check. Even if your thyroid tests are normal, this Dr. says that many women still have a thyroid problem and would benefit from medication..."

I checked the guidelines and I think you can refer to this Dr.'s writings. Please do so as I would really like to do some research into this. I have had my thyroid tested several times over the years and it always checks out normal....but I have never felt like it was. Please post the information so that I could do some research on those findings. I have had fibro nearly 2o years...or more...I was diagnosed nearly 20 years ago.

Thanks!!! Runtomuch

 
Old 12-10-2003, 05:44 PM   #11
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MISKC91 HB User
Re: Fellow FMS suffers please respond!!! I need your help!!!

Hi,

I just posted a topic called Vitamins and other things that make (FM) feel better. Please read this. Larazopam put me to sleep like a baby but it can be habit forming. At my worst I stayed up 48 hoours straight. I was taking 2 10 mg Ambien a night and only sleeping 2 hours when in fact they should be knocking you out for 10 hours- just one pill. Try Larazopam. It is a muscle relaxer, helps with anxiety, and is used for insomnia. I have tried many medications and none of them worked for sleep except Larazopam 1 mg.

Also, COQ10 is excellent for the pain. What is your body temperature? If you have a low body temperature, that is a breeding ground for infection. Please read my info on helpful vitamins.

Thanks, and may God bless you!
Quote:
Originally Posted by sTaR_cHyLd
I was diagnosed with my fibro one week ago , but have been suffering over a year. I am finding a very hard time coping with the pain, and cannot seem to find anything that controls the pain. I am in pain 24/7 and it never ends. Any ideas of something that offers "constant" relief?? My boss is already threatening to release me from my job, due to me not functioning and thinking clearly due to the pain, I cannot afford to lose my job. I cry myself to sleep every night. Here is the list of meds I have tried, Elavil, Flexeril, Soma with and without codeine, Ultracet, Ultram, Darvocet, Lexapro, clanazoprine, Wellbutrin, Vicodin, Celebrex, Vioxx, Amitriptyline, Ambien, Naprosyn, Tylenol 8 hour and arthritis, and Percocet. Nothing is helping me sleep and with the pain? Any ideas of something that will help around the clock? My other problem is my husband is not being supportive at all, he is saying it is all in my head, and im just addicted to medicine. i tried to tell him that if he felt the pain I did he would understand. I just don't know where to go anymore, I go for two more MRI's today, as well as an appt with my fibro doctors, please help fellow suffers, Im open to all the suggestions you have.
Sincerely
Suffering in pain )=

 
Old 12-10-2003, 09:43 PM   #12
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Liberty77 HB User
Re: Fellow FMS suffers please respond!!! I need your help!!!

Hey there, I am sorry to hear about constant pain! I know a woman who was in the same position as you were, and opted for a more natural approach to pain relief...All of those drugs you've taken are really hard on your system - it's no wonder you feel awful...Anyhow, there is a light on the horizon - it's a herb called Maca - from Peru, it helped my friend become pain free and have restful nights again...after 6 weeks!
It's revitalizing in that it balances your whole hormonal system, gives you more energy, and helps rid you of the pain, she got it online at [removed], it's certified organic, comes in capsules or powder (cheaper) and you can mix it into power shakes...I hope this helps

Last edited by moderator2; 12-15-2003 at 08:00 AM. Reason: Do not post commercial websites. Only product names are allowed here. Please carefully read and follow the board posting guidelines. Thank you.

 
Old 12-15-2003, 12:51 AM   #13
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Jan21337 HB User
Re: Fellow FMS suffers please respond!!! I need your help!!!

There is a drug that is actually for seizure patients but in the right dose, takes the edge off of FM. It is LAMICTAL, 25mg. You start out one a day for a week, two a day for a week then three a day for a week and stay on that.

When I turn over in bed it feels like there are shreds of broken glass in my muscles and they've been frozen; I move and it explodes. Crazy description but that's what it feels like.

Good luck.

I was diagnosed with my fibro one week ago , but have been suffering over a year. I am finding a very hard time coping with the pain, and cannot seem to find anything that controls the pain. I am in pain 24/7 and it never ends. Any ideas of something that offers "constant" relief?? My boss is already threatening to release me from my job, due to me not functioning and thinking clearly due to the pain, I cannot afford to lose my job. I cry myself to sleep every night. Here is the list of meds I have tried, Elavil, Flexeril, Soma with and without codeine, Ultracet, Ultram, Darvocet, Lexapro, clanazoprine, Wellbutrin, Vicodin, Celebrex, Vioxx, Amitriptyline, Ambien, Naprosyn, Tylenol 8 hour and arthritis, and Percocet. Nothing is helping me sleep and with the pain? Any ideas of something that will help around the clock? My other problem is my husband is not being supportive at all, he is saying it is all in my head, and im just addicted to medicine. i tried to tell him that if he felt the pain I did he would understand. I just don't know where to go anymore, I go for two more MRI's today, as well as an appt with my fibro doctors, please help fellow suffers, Im open to all the suggestions you have.
Sincerely
Suffering in pain )=[/QUOTE]
[FONT=Arial]

 
Old 12-27-2003, 02:13 AM   #14
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jkacope HB User
Re: Fellow FMS suffers please respond!!! I need your help!!!

Quote:
Originally Posted by sTaR_cHyLd
I was diagnosed with my fibro one week ago , but have been suffering over a year. I am finding a very hard time coping with the pain, and cannot seem to find anything that controls the pain. I am in pain 24/7 and it never ends. Any ideas of something that offers "constant" relief?? My boss is already threatening to release me from my job, due to me not functioning and thinking clearly due to the pain, I cannot afford to lose my job. I cry myself to sleep every night. Here is the list of meds I have tried, Elavil, Flexeril, Soma with and without codeine, Ultracet, Ultram, Darvocet, Lexapro, clanazoprine, Wellbutrin, Vicodin, Celebrex, Vioxx, Amitriptyline, Ambien, Naprosyn, Tylenol 8 hour and arthritis, and Percocet. Nothing is helping me sleep and with the pain? Any ideas of something that will help around the clock? My other problem is my husband is not being supportive at all, he is saying it is all in my head, and im just addicted to medicine. i tried to tell him that if he felt the pain I did he would understand. I just don't know where to go anymore, I go for two more MRI's today, as well as an appt with my fibro doctors, please help fellow suffers, Im open to all the suggestions you have.
Sincerely
Suffering in pain )=




my rhumy has me on requip and mirapex. they have worked wonders for me!between the meds and going to the gym- i feel great.i still have a bad day sometimes- but that is ussally when i've over done it.ask your doc about it.

kathy
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Old 12-27-2003, 04:44 PM   #15
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barbbadr HB User
Re: Fellow FMS suffers please respond!!! I need your help!!!

Hi! I was diagnosed w/FM about 2 yrs ago. All medical exams turned out neg. for thyroid problems or any other medical conditions which would result in the FM symptoms. I decided right in the beginning that I would not take meds but looked for alternative therapy. After 6 months of chiropractic therapy and deep tissue massage, my FM symptoms were diminishing. The combined therapy, along with simple muscle strengthening techniques and a better diet allowed a more restful and longer night's sleep (extremely important in restoring the body's equilibrium). At this time I feel alot better than I've felt in the past 3 years. I plan to maintain this routine and keep improving choices that I make in order to slow or stop FM symptoms, such as, eventually moving toward a more holistic diet -- more whole foods. (especially, watch out for preservatives and food enhancers - MSG) Keep this in mind: SLEEP, DIET, EXERCISE and try to eliminate obvious stressors. Please don't give up and take things one step at a time. Lastly, the most important thing is to take care of YOU FIRST. Be good to yourself before you can be good to anyone else is something I live by everyday since my diagnosis of FM. I'm married and have a 3.5 yr old child and know about pressures of daily life. It is vital for me to take a "time out" when I find myself doing it all (like most women find themselves doing) and just let it all happen around me. Walk away for a while to feel better. Don't let the stress get to you. Good luck and I hope my words have helped you at least a little.

 
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