How does one find a doctor that will listen?
- BettyM_4
- lasaluv
- Jausten
- AmberW_2
- ______MarcellaGM
- PattiW_3
- BettyM_4
- Jausten
- KarenG_3
- AuntMaryam
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» BettyM_4 - Barb, I wanted to say there are alot of us with foot pain. I ha
Barb, I wanted to say there are alot of us with foot pain. I have had buzzing, semi-numbness, and pain for about 6 years, and the rest of it started alot earlier, about 13 years ago. Anyway, I'm always having to consider my feet - they do go everywhere with us! Weather affects my feet the most, and with fall finally getting serious, my summer remission is about to end.This is the fun I had with my doctor this week: I went in to consult about medications and to discuss my current situation. I'm having trouble with the NSAIDS, stomach irritation, cramps, bowel symptoms, ugh. We got that figured out, ( she had me try a lower dose, but I can't take that either, so it's back to just Ultram) and then I handed her a paper I had filled out showing the human figure and highlighting the areas of most pain, back and front. She glanced at it and said, "Well, that is very typical" and that was that. I had written up a pain sheet rating my pain levels from l to 10 and she put this aside and made no comment. She did ask what hurt the most and made some suggestions for my neck. This is the rheumy who gave me the fibro diagnosis last year.
Here's the real fun part. It was time to get my disabled parking permit renewed last month. But when I sent some papers in ahead of time, her office called me back and said that the doctor "wanted to talk to me about that" so I'm thinking, what does that mean? My astute husband suggested I take the necessary papers up to my old GP's office (his replacement) where I had been issued the first permit and they know me well, and get it renewed ASAP. I was able to do so with no hitches.
Meanwhile, I had called the rheumy office to tell them I already got the permit renewed so they wouldn't have to deal with it. Apparently the message didn't get thru to the doc, because her next statement to me is, "About this handicapped permit, I think it's a really bad idea."
In retrospect, I guess I sort of jumped on her. I said I disagreed and told her why, and then she changed the subject.
I really was very upset after this visit. It's like being told that your pain isn't real, doesn't count, and that you should keep a stiff upper lip and just COPE!
I am really back to square one with this doctor. She doesn't believe my pain, therefore she doesn't believe me, therefore I am a whiner?
I'm about to the point where I'd like to find a good local GP who is willing to learn and to work with me. Maybe a learning and open attitude in a doctor is the most important thing, not whether the expertise is in rheumatology...
Hmm. I'm still thinking.
-- posted by BettyM_4
» lasaluv - Barb Takeda Betty, I'm astounded that you rheumy reacted thi
Barb TakedaBetty, I'm astounded that you rheumy reacted this way to you. After all isn't this her specialty.
It's odd, my gp is the one who always seems negative about my trying to go on disability, getting a handicapped license, etc. etc. My rheumy is the one who always treats me like a person, these past couple of years I have been in a very bad flare so every time I see her it seems I end up in tears, she is so compassionate and always investigates every new problem to ensure that it is not something else before we chalk it up to FMS.
Nice to hear about someone else who has painful feet, some nights I look at my feet and wonder how the pain can be soooo intense, but they look like everyone else feet - normal.
Cynthia, thanks for the info on sleep medication. I'll be well armed with information when I next see my doctor and maybe try something else.
Barb
-- posted by lasaluv
» Jausten - Hi all, I'm posting a message from Dr. David Nye, who is a ne
Hi all,I'm posting a message from Dr. David Nye, who is a neurologist in Wisconsin who is very knowledgeable about FMS. I hope he doesn't mine..*g..It relates back to the discussion about guaifenesin that we had back in September.
"Bennett's unpublished study of guaifenesin in FMS found that the rate of
improvement on guaifenesin was no better than on a placebo, an inert pill.
There have been no other scientific studies finding it effective [...]
There is also evidence against St. Amand's theory of why guaifenesin works
in FMS and none in support of it. He has proposed that FMS is caused by
phosphate "deposits" in muscles and that guaifenesin removes these
"deposits". NMR spectroscopy studies of muscles of FMS patients which
found no abnormalities of muscle energy metabolism also showed no increase
in phosphates. In the same study which found guaifenesin to be no better
than placebo, no increase in phosphate excretion in patients taking it was
seen.
St. Amand has posted elsewhere that he does not believe it necessary to
test for tender points when diagnosing FMS (one of the two diagnostic
criteria in the syndrome definition that everyone else studying FMS agrees
upon) and that he makes no distinction between FMS and myofascial pain
syndrome, so it is possible that Dr. St. Amand's patients don't have FMS
but MPS or some other disorder. Perhaps guaifenesin is effective for MPS
but not FMS. Another study is needed to answer this question, as Bennett
only studied patients with FMS.
David A. Nye MD"
Hope this clears up the question about guaifenesin.
Now on to foot pain. I think it must be something in the air. My feet have been bothering me a lot lately when I try to get to sleep. By the way, my Soma doesn't seem to be helping me sleep very well lately, and I'm going to see my GP tomorrow about my pain, sleep, and depression. I'm sure he'll be soooo happy to see me..
Betty, if you were taking NSAIDS for FMS, they generally don't help because we don't have inflammation going on. I'm glad that you just went to the GP for the handicap parking permit. I have one, and whether I use it or not is my choice depending upon how I'm feeling that day, if there is a close regular parking spot, or if I'm going to be walking in a Mall for awhile.
I don't see a rheumatologist. I see a chronic pain specialist, but I presume that they are very rare. My GP is very supportive of any treatment that I want to try, and he and my specialist both agree that pain medications are necessary for FMS. Frankly, if I didn't have something stronger than NSAIDS or tylenol for pain, I'd never be able to write articles, do my web site, walk my dogs, or do any household chores. Doctors have to learn that the quality of life is more important than their dumb fears about us not walking, exercising, or becoming addicted. If I was addicted, I'd be seeking stronger drugs or increasing the dose. This does not happen.
Am I anti-doctor right now?...well, I'm anti-dumb doctors...*g....
Cynthia
Jausten
Suite 101 Contributing Editor: Fibromyalgia
-- posted by Jausten
» AmberW_2 - Barb, The side effect that caused me to stop taking the amatr
Barb,The side effect that caused me to stop taking the amatriptyline relates to part of the word, "trip." After taking the amatriptyline for about three days, I woke up 5 minutes after my alarm went off. Because I woke up late, there was no point in getting out of bed, the world was going to end. Fortunately, I was able to finally get myself out of bed (I think my kids helped). I flushed the amatriptyline.
Although the Pamelor helped greatly at first, it no longer makes me tired. I think it is still helping me fall asleep most nights. I wrote down Cynthia's suggestion (tanks) and will present it to my MD when I next see him.
-- posted by AmberW_2
» ______MarcellaGM - HA! Soma, something new to try. Well, I'm off to my local inte
HA! Soma, something new to try. Well, I'm off to my local internet RX, to find out more about this med. I am taking Ambien, for sleep and Remeron 30mgs. Remeron is also one of the newer anti-depressants. I was also perscribed a very strong pain medication that has little or no effect on me. I rarely take it and only use it as a placebo when I do. Since doctors think this is all in our minds why not see if it works for meds? The Ambiem worked the first night I took it and then it was back to the wrestling match with my bed. Ah, to sleep, perchance to dream. MarcellaPacific Northwest Garden
-- posted by ______MarcellaGM
» PattiW_3 - Hi there! I just had to make a few comments after reading the
Hi there!I just had to make a few comments after reading the posts here. First, i live in the St.Louis area, and i have yet to find a doctor who specializes in FMS! When searching for a doctor, i called a rheumy whom i thought would be a good choice. A female doc, young, only 38 yrs old, her father was also a rheumy & she was an internist as well. When i called her ofc & spoke with her secretary & explained my diagnosis - i was asked to hold on - When the secretary returned, she politly informed me that this doctor will not even accept patients with my diagnosis!!!! Can you believe that a rheumatologist will not even allow someone with FMS as her patient?? I was beside myself! I am still searching for a good FMS doc, but in the meantime, i am seeing a chronic pain specialist also.
I also wanted to mention that i am grateful that someone has openly disputed the guaifenasen theory! I saw a doc who, after reviewing my many diagnosis' gave me a 6 month supply of prescriptions for guai and that was it! That was all i was going to get from this doc! Well, like everyone else, i will try anything, but all i got was sick! I certainly don't think that Guaifenasen is the answer at all! I do agree that finding a doctor who is open to trying various treatments & who is understanding and compassionate may very well be our best hope, if we live in an area that is not blessed with the "experts".
I also agree that without my pain medication, I would have no quality of life whatsoever! I, too, am on a very strong pain medication, and I face critisism from some of my family members for taking it. But they do not feel my pain, nor do they have to live with the suffering i do without the pain medication. So, I take my meds, and i ignore their comments. If only they could walk a mile in our shoes, or should i say, Lay a day in our beds? By the way, i called Amitryptoline my stupid pills, because they made me so stupid! I am now taking Trazadone, also called Deseryl, with great success. Just wanted to mention that!
Take care everyone!
Patti 
-- posted by PattiW_3
» BettyM_4 - Hi Patti, Hi Everyone, just catching up on all the info here -
Hi Patti, Hi Everyone, just catching up on all the info here - it's alot! I recently asked a nurse I know if she could recommend any local GP's who would/could deal with FMS and she thought for about 5 seconds, and said NO! So nothing in that area.I was talking to a woman at the health club today and she is on a pain medication patch. She says it's some kind of narcotic. She has severe back and leg pain and a messed up stomach. Has anyone tried a patch? This gal goes to a young doctor that apparently has some of the newer info on pain protocol. She was referred to a pain clinic in Seattle at one of the major hospitals. Here's an avenue.
Cynthia, the NSAIDS did help me while I took them, maybe because I am supposed to have osteoarthritis also - I don't know. But my stomach is alot happier these days. My feet are beginning to feel stupid again, off to the hot tub, my place of sanity.
God loves us!
-- posted by BettyM_4
» Jausten - My chronic pain specialist deals with a lot of patients with FMS
My chronic pain specialist deals with a lot of patients with FMS and CFIDS, plus my GP also has a lot of patients with the same conditions. Frankly, finding a FMS specialist is like finding my sanity sometimes, but a chronic pain specialist is probably better than most rheumatologists..at least in B.C., Canada.One of the things that is so frustrating is finding the right drugs that help us on an individual basis. I've given up with my Soma except for really sleepless nights, but my legs and feet have been driving me crazy so I'm taking a medication that is used for people with Parkinson's Disease. I'd post the name, but I had about 4 hours of sleep and it is 6:30am and my brain is slowly going into la la land, and that isn't Los Angeles...
When we have other conditions besides Fibromyalgia, NSAIDS do help for the other conditions, but the authorities on FMS do say that they don't help for FMS, but who knows? Maybe they do help, but they do havoc on the stomach.
Another thing I find frustrating is that some of the medications that are available in the states aren't available in Canada. I don't know about other countries, but we can't get Ambien, Ultram and a few other drugs that seem to help. A patch for controlling pain is probably morphine or dilaudid..at least in Canada, we do have that..*g....
I'm going back to bed. Fried my brain trying to do email, and my feet are killing me...
Cynthia
Jausten
Suite 101 Contributing Editor: Fibromyalgia
-- posted by Jausten
» KarenG_3 - NSAIDS
HI Betty and all,I was just reading through some of the posts and saw the one about not being able to stomach ( no pun intended) NSAIDS anymore. I too have that problem and my doc has given me NSAIDS suppositories. I have to admit at times it is difficult using them do to the pain but they do help whether it is the arthritis or whatever is causing the inflammation I have ( high sed rate).
I thought I would just mention that they are available in that form and that doesn't cause me any stomach problems at all using them.
-- posted by KarenG_3
» AuntMaryam - Guafensin
I read in ARTHRITIS TODAY about the guafensin theory. As yet there is no hard data that proves guafensin helps FMS. Personally, I would we wary of trying this if only because of the medicines guafensin is in and the problems it is proscribed for.Estelle
-- posted by AuntMaryam
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