pixiepoodle
01-26-2002, 10:14 PM
I haven't been keeing up with the board as much lately because of working a lot of overtime, but while reading a lot of the msgs. today, it seems over and over people can't find drs. who know how to treat FMS. The most important thing you can do is when you first call a new dr. ask if they treat Fibro patients and what kind of drugs they prescribe. If you already know you want to try a certain med or are already on a med like Ultram and not getting an adequate amt. in the prescription you get, be sure to ask if the dr. prescribes it. Of all the drs. I have tried, a pain specialist is the best and obviously the most sympathetic towards anyone with pain because they are trained and educated how to deal with chronic pain. A pain specialist can be found through a pain clinic in the yellow pages or your medical ins. provider book under various titles like anthestiologist, emergency medicine or pain specialist. When you go they will want to see your medical records from the drs. who have treated you in the past and this is a blessing because that paper trail proves you are not an addict looking for a high because those types will not have the same notes of patient observation in their files that you do or a history of all the pain meds you've tried that wouldn't interest an addict, like NAIDs. I say all that because its the addicts that spoil it for those who really need strong/steady pain meds and then there's all those uneducated drs. in the area of pain meds or just how painful Fibro is. For those of you who have reached the end of your rope after trying many meds, please read my 2 posts on the morphine pump implant I am about to get next Friday. I have been the route of NSAIDs, antidepressants, Vicodin, Ultram, Soma, pain creams, theraphy and exercise. I tried 15 mg of morphine twice a day a couple months ago for the first time and it worked for about 6 weeks. When the doze was upped to 30 mg, it only worked good for a few days. My dr. then told me a pump is the only way to go since the dozage is very low (1 mg) and you don't build a tolerance because it goes straight into your spine, by passing your bloodstream and brain which cause you to build up a tolerance to drugs. I had my trial run yesterday which you can read about in my post. It went great and I only wish I didn't have to wait a week to have the pump implanted since my pain is now back in full bloom now that spinal injection has worn off. Good luck to everyone and don't give up trying to find the best dr. for you.
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korken
01-26-2002, 10:42 PM
PP, Good info.
Gary went to a pain specialist and it was great but, we needed a good FMS, CFS doctor too. We were really lucky to find a doctor that is FMS, CFS, Infectious Disease and Pain managment Specialist who is also board certified in all.
Thanks for the post,
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Take care ~Kim & Gary~
Gary went to a pain specialist and it was great but, we needed a good FMS, CFS doctor too. We were really lucky to find a doctor that is FMS, CFS, Infectious Disease and Pain managment Specialist who is also board certified in all.
Thanks for the post,
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Take care ~Kim & Gary~
SamQKitty
01-27-2002, 04:01 AM
Most rheumatologists are at least aware of fibromyalgia. If you find a good one, he/she will understand the pain that FM patients deal with. Also, many doctors who deal with conditions that cause chronic pain, like arthritis and FM, are starting to be re-educated about pain control. My own rheumatologist, who was very concerned six years ago because I was taking darvocet(temporarily), has now told me he would have absolutely no problem prescribing either Vicodin or Darvocet on a continual basis!
There have been some great articles on pain management in the Fibromyalgia Network newsletter...you can order back issues from them, and it might be a good idea to copy some of those articles and give them to your doctors.
Pain management is starting to emerge as a specialty field, and that's also helping in terms of studies that show that people who use narcotics for pain control don't tend to abuse them.
Having said all that, it is important to understand that one can build up a tolerance to pain meds. Sometimes the only course is to stopping taking them for a while (and, of course, feeling miserable while off them, which stinks), but after a while, the same medication that had stopped working will sometimes start working again. And, of course, using different meds, using the least amount that will work, sometimes alternating between meds, etc., can help avoid the tolerance buildup.
Sometimes I wonder which is more exhausting, HAVING FM or MANAGING FM!
There have been some great articles on pain management in the Fibromyalgia Network newsletter...you can order back issues from them, and it might be a good idea to copy some of those articles and give them to your doctors.
Pain management is starting to emerge as a specialty field, and that's also helping in terms of studies that show that people who use narcotics for pain control don't tend to abuse them.
Having said all that, it is important to understand that one can build up a tolerance to pain meds. Sometimes the only course is to stopping taking them for a while (and, of course, feeling miserable while off them, which stinks), but after a while, the same medication that had stopped working will sometimes start working again. And, of course, using different meds, using the least amount that will work, sometimes alternating between meds, etc., can help avoid the tolerance buildup.
Sometimes I wonder which is more exhausting, HAVING FM or MANAGING FM!
cioc1212
01-27-2002, 01:49 PM
My rheumatologist diagnosed me then put me on the "FM train" with PT and medications. She neglected to run thorough tests including Lyme or a head MRI(headaches and neck pain were top on my list). She just went with "standard procedure" rather than looking past her nose for anything that might be causing the problems.
Once I switched to Kim's doc, who is board certified in FMS/CFS and infections disease, I got hour long instead of 10 min appointments, lots of testing which found some serious problems and also a doctor who believed me when I told him that certain medications worked or didn't. He went with what I told him rather than going by his "experience" with other people. Like many of us, I don't react normally to meds and had a bad reaction to one. The rheumy didn't believe me and accused me of "drug seeking" when I was really having a huge increase in my BP and heart rate! Almost killed me with the meds she mixed!
My new doc listens to me and I went further with him in 3 months than I had in the last 20 years!
The best advice I can give anyone is to EDUCATE YOURSELF, ask questions, make your doctor listen to you. GET COPIES OF YOUR BLOODWORK, my rheumy told me that tests were run when they never were, the obvious like THYROID and test for LYME which I had been in high risk situations for. Only when I started questioning did I make progress. Otherwise I'd still be beating myself up because I didn't do things "right" with diet and exercise and despite anything I did(and I've done them all from Biofeedback to running) I wasn't getting better and NEVER WOULD HAVE.
I'm sad about all the years I felt like it was my fault that I was sick. All the people close to me and doctors who treated me like a hypochondriac. All those years of fighting through the pain and suffering. I was so angry, now I'm just sad about the time I wasted and how angry I was with myself. I come to this board in the hopes that my postings will help someone else to get treatment earlier than I did. That by posting, someone else will get curious or angry enough to start questioning their health care!
Rach
[This message has been edited by cioc1212 (edited 01-27-2002).]
Once I switched to Kim's doc, who is board certified in FMS/CFS and infections disease, I got hour long instead of 10 min appointments, lots of testing which found some serious problems and also a doctor who believed me when I told him that certain medications worked or didn't. He went with what I told him rather than going by his "experience" with other people. Like many of us, I don't react normally to meds and had a bad reaction to one. The rheumy didn't believe me and accused me of "drug seeking" when I was really having a huge increase in my BP and heart rate! Almost killed me with the meds she mixed!
My new doc listens to me and I went further with him in 3 months than I had in the last 20 years!
The best advice I can give anyone is to EDUCATE YOURSELF, ask questions, make your doctor listen to you. GET COPIES OF YOUR BLOODWORK, my rheumy told me that tests were run when they never were, the obvious like THYROID and test for LYME which I had been in high risk situations for. Only when I started questioning did I make progress. Otherwise I'd still be beating myself up because I didn't do things "right" with diet and exercise and despite anything I did(and I've done them all from Biofeedback to running) I wasn't getting better and NEVER WOULD HAVE.
I'm sad about all the years I felt like it was my fault that I was sick. All the people close to me and doctors who treated me like a hypochondriac. All those years of fighting through the pain and suffering. I was so angry, now I'm just sad about the time I wasted and how angry I was with myself. I come to this board in the hopes that my postings will help someone else to get treatment earlier than I did. That by posting, someone else will get curious or angry enough to start questioning their health care!
Rach
[This message has been edited by cioc1212 (edited 01-27-2002).]
darlene
01-27-2002, 11:30 PM
Do you guys realize how lucky you are that you have found doctors that are as good as you say they are? I have a rheumatologist who I have to see every three months and I really don't know why I bother. He checks me out, pushes, prods, pulls and everything else and for days after leaving those appointments I can hardly move, worse than usual. He has never prescribed pain medication for me, my PCP is the one who prescribes those and he's rather stingy with them. So, unless your doctor is located in the Pacific Northwest, Portlnd Or, what you would suggest is a Pain Specialist? Also, I'm curious about the pain pump, a friend of mine had one inserted due to back pain, and is just now in the hospital having it removed. She got sick and was running a fever of 103, and they found that "something" broke off and was causing a major infection. Hopefully, this is a very unusual occurrence. Anyway, if anyone out there knows of a good FM doctor in the west coast please let me know.
Thanks,
Darlene
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Thanks,
Darlene
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korken
01-27-2002, 11:44 PM
Darlene,
I don'y know anything about the 2 or 3 docs that are on the co-cure good doc site. But if you look under New to board... by cico1212 something like that. Go to the responce by kim and and you will be able to click on the link to the good doctors list. As I said I don't know anything except they are listed in Portland and otheres near there.
Good luck in you search..
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Take care ~Kim & Gary~
I don'y know anything about the 2 or 3 docs that are on the co-cure good doc site. But if you look under New to board... by cico1212 something like that. Go to the responce by kim and and you will be able to click on the link to the good doctors list. As I said I don't know anything except they are listed in Portland and otheres near there.
Good luck in you search..
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Take care ~Kim & Gary~
Creeping Crud
01-28-2002, 02:49 PM
Darlene: I can totally relate to your experiences with your doctor & I echo your sentiments.. They are lucky to have found such good doctors.. I was never prescribed anything for pain either, I've never had an appointment that lasted more than 10 minutes and after several visits of hearing nothing more from my rheumatologist than "Come back in two months" and having him avoid all my questions, I finally stopped seeing him altogether.. The second one I saw was almost as helpful and informative as the first, so I stopped paying him for nothing too.. If it hadn't been for the internet, I wouldn't have known even the simplest things about fibromyalgia treatment such as the benefits of exercise..
So why not find a good rheumatologist, you ask? Unfortunately, I don't have health insurance which automatically puts me on the undesirable patient list (and might increase my wait to see one substantially - do most rheumatologists make you wait 6 months before they'll see you?), nor do I have extra money lying around to waste shopping around for doctors or on appointments that seem to do nothing but cause more stress than they alleviate.. Plus, I've recently moved and by the time a rheumatologist will actually agree to see me around here, I will have already moved again..
I don't just question the health care I've received in the past year, I curse it..
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» pain and suffering are inevitable, but misery is optional «
So why not find a good rheumatologist, you ask? Unfortunately, I don't have health insurance which automatically puts me on the undesirable patient list (and might increase my wait to see one substantially - do most rheumatologists make you wait 6 months before they'll see you?), nor do I have extra money lying around to waste shopping around for doctors or on appointments that seem to do nothing but cause more stress than they alleviate.. Plus, I've recently moved and by the time a rheumatologist will actually agree to see me around here, I will have already moved again..
I don't just question the health care I've received in the past year, I curse it..
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» pain and suffering are inevitable, but misery is optional «
gruffgriff
02-02-2002, 02:09 PM
Darlene: You might try Dr. Andrew Holman in Renton Washington. He has self-funded some good studies and is very, very informative with a new patient. He seems to really care. We saw him as a consultanting physician working with our rheumatoligist in Idaho for our 18 year old.
darlene
02-03-2002, 04:56 AM
Thanks guys for your replies. I agree that the rheumatologist's seems to not really get involved in any follow up care, at least mine doesn't. He pokes, pulls, prods, & says I'll see you in three months & walks out of the room. I don't think he has ever sat down and asked me how things were going, was anything better or worse, and he has NEVER prescribed anything for me except anti inflammator drugs which do not work for me at all. My PCP seems to be more informed and concerned with the FM than he has. Right now I'm pretty much down on the specialist, so hope I'll be able to see the one who runs the rheumatology clinic at OHSU.
Good Luck to all of you.
Darlene
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Good Luck to all of you.
Darlene
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