ARRRGGGGhhh.....ready to scream and cry!!

Discussion in 'Fibromyalgia Main Forum' started by maggiemae55, Sep 15, 2005.

  1. maggiemae55

    maggiemae55 New Member

    why-o-why do dr.s treat us like children!?! i just went to see a new rhuemy, who basically laughed me out of the room. (1st went out permanetly on maternity leave). he kinda sorta believes in fibro and cfs. he really did treat me like i didn't know what i was talking about.

    he doesn't like to "label" with those dx's because he thinks every ache and pain will be blamed on it and serious things will be missed. i can see his point, but if i think i am having a heart attack, i will go to the er!

    i showed him some info from FFC and he said they were not evidence based, and you can't believe what 1 man says.

    told him i had had low grade fevers for years, and he said my thermostat must be broken, and i had had every test done and showed no infection. he said he would put me on low dose prednisone and if that helped, plaquenil. he looked at my fingers and said i had some arthritis too.

    i was about to burst into tears. he asked me my social hx, yes i am divorced, yes 2 kids in college, 1 more getting married in november. yes, i have 3 part time jobs, yes i am STRESSED!! then he just shrugged. said come back in 3 months...i think i'll write him a letter and nicely tell him how to treat a patient. i work in a hospital and know doc's can be jacka#$%es, but...this guys takes the cake.

    now, i am confused and upset, do i really have fibro and cfs?(he said tender points are an 'old fashioned" non proven way of dxing fibro). "pain and fatigue can be from other things...."

    i just needed to vent, i just am furiuos and sorry that we (or so many of us) have to put up with these types of doc's.

    thanks for listening (reading "-)

    warmly,
    maggie
  2. yuckie

    yuckie New Member

    Sounds like you need a new rheumy. I'm curious, did he say why he would put you on prednisone and if that worked plaquenil? Prednisone is a steroid and can have some very nasty side effects. The combination of pred/plaquenil sounds like he would be treating you for lupus. Interesting that he's not willing to diagnose Fibro or Chronic Fatigue but is willing to treat you for lupus.

    It can be so darn stressful to go to these docs and then they pull this on you.
  3. Francey54

    Francey54 New Member

    Dear Maggie:

    Hon I am so sorry for your having to go through that with an apparently inconsiderate and unsympathetic doctor.

    By all means write him a letter, maybe he will think twice before treating an FM & CFS patient like that again!

    Some good advice if I may, before making an appointment the next time with a new Rheumy, ask his secretary out right "Does he/she treat patients with Fibromyalgia and Chronic Fatigue? If she says NO, then on to the next doc on the list.

    I refuse to see any doctor who does not believe in our ailments and dismisses them as if we were "neurotic".

    Vent all you like Maggie, you have a right to and we are here to listen to you.

    Good luck and please let me know when you find a caring physician. He/She has got to be out there.

    I send you many BIG hugs,
    Francey
    [This Message was Edited on 09/15/2005]
  4. ksp56

    ksp56 Member

    What a jerk. Hopefully, there are other doctors who won't give a shrug and pat you on the head!

    Maybe you could contanct someone at the FFC and see if they can suggest someone. He's probably threatend by all of those doctors and their 'pedigrees.'

    Gentle Hugs,

    Kim
  5. LollieBoo

    LollieBoo New Member

    I am so willing to jump in on your parade, with all of the problems I have been having with my own Rheumy- WHEN you send your letter to this doc, please do cc it to the quality control dept. at the hospital with which he is affiliated and to the administrator of his clinic (if there is one). If there are comment cards, use those so it is officially documented and there HAS to be action taken.

    You don't have to put up with those types of docs.


  6. aquabugs

    aquabugs New Member

    Pain and fatigue CAN be from other things...more serious than FMS/CFS. That was not necessarily a flippant uncaring remark on his part.

    (Now before anyone jumps all over me...take a deeeeeepppp slooooooow breath and read on.

    I also have FMS AND CFS and they are very real and very serious to me...to the point I have had to stop working at least temporarily.

    I think from the things Maggie said, it may not be as simple as the doc is a jerk and he isn' taking her seriously.

    Believe me...I have had my share of jerk, "I AM GOD" doctors, so I am not necessarily on the doc's side here. I just wanted to offer a plausible alternative.
    )

    It sounds like he suspects an autoimmune disorder. And before you decide he is blowing you off and not taking you seriously, please consider that he has to rule out other problems before he can diagnose FMS or CFS. He'd be very remiss if he didn't rule out other things first.

    Plaquenil is a disease modifying antirheumitic drug used to treat autoimmune disorders including RA, lupus, and the one I have (Sjogren's Syndrome).

    The drug can actually modify the course of those diseases so they hopefully they don't progress. You might want to talk to him and ask why the Pred and Plaq. AI disorders are notoriously hard to diagnose and people with those suffer as much doubt and misdiagnosis and lack of understanding as ppl with FMS/CFS.

    I have both, I know! You can have an AI without postive blood work and even the ones you do have postivie can change over time. Some docs won't diagnose without all positive blood work, but you are still sick. That is my problem.

    I now have a doc treating me who knows his stuff and realizes that the Plaq helps my pain quite a lot. I believe that Pred is given to lessen a flare of AI. He is probably wanting to try a course of that to see if it helps you feel better right away. If I were you I would not worry about that masking anything for the short term.

    If those drugs help, then it is probably AI and the Plaq is a good drug for that. But, be aware that it takes months for the Plaq to build up to a theraputic level in your body tissues - the usual time is around 6 months. But believe me, it is worth it.

    For me it helps some of the pain and fatigue. Also if you end up on Plaq, they usually require you to see an opthalmologist every 6 months and in RARE cases the drug can affect the retina. However; don't worry, if an eye problem does arise, it is totally reversible by just stopping the drug.

    I was diagnosed with Sjogren's about 4 yrs ago and was doing quite well on Plaq until I developed FMS and CFS this past year or so. Unfortunately FMS is a very common secondary disorder with the primary AI disorders.

    Just wanted to put a different perspective on this. It sounds to me like he IS taking you seriously but that he thinks it may not necessarily be FMS. A lot of the symptoms overlap so I'd trust the doc at least for a while. If you do have an AI disorder, it is important to get the proper treatment early on.

    I don't want to step on anyone's toes, but I think that since it appears he may think you have some autoimmunity, you might do better to listen to him at least for a while. If he truly was blowing you off he would not have suggested the Pred and Plaq.

    It's just too bad some docs don't have a more sympathetic demeanor and feel they can't be more open to what the patient has to say. He might be a jerk...but it does not necessarily mean he does not know what he is talking about.

    Take care and let us know how it goes.
    Feel better soon.
    Sylvia

    Anyway, just my two cents from experience.
    [This Message was Edited on 09/15/2005]
    [This Message was Edited on 09/15/2005]
  7. LEFTYGG

    LEFTYGG Member

    Ive cried so many times after a dr visit. its process of elimination. I JUST KEPT GOING TO DRS TILL ONE BELIEVED AND LISTENED. KEEP LOOKING HUGS GAIL
  8. wickett

    wickett New Member

    I will tell you that everytime I go to my Rhematologist. He is very understanding. He tells me his fibro patients are never very happy. He told me honestly the reason fibros come back is he keeps track of their blood, x-rays & fibros want their medication. I told my family doc, I just want to go to him not the Rhemy. Boy are those Rhuemy expensive!!! If I have any big trouble I would go back to get it under control. I actually beleive they have done what they could.

    Keep working on finding a doctor you can trust and communicate with.

    I will pray for you, wickett
  9. cbella

    cbella New Member

    I would find a new doctor if I were you! You pay him good money and obviously not satisfied with his treatment. good luck1 cb
  10. Mareeok

    Mareeok New Member

    Have a good scream and cry and then evaluate what the rheumy said. Take from it what will benefit you and dismiss what will not. If you feel he is really not looking out for your best interest it is time to search for another doctor.

    Soft heart hugs,
    Maree
  11. maggiemae55

    maggiemae55 New Member

    many thanks for your listening ears, and suport.

    i do understand the fear of blaming everything (that could be serious) on fb and cfs. but he really did not investigate anything at all.

    he said the pred was to see if it helped my low grade fever, and after 21 days of 5 mg, if it helped try the plaquenil. i was on higher dose of pred about 10 yrs ago and hated it. so it sounded to me that if i had inflamation causing fever the pred should help. if it doesn't, he gave me no other alternative.

    he did not order any bloodwork. my last blood work was 1 yr ago with the infectious disease guy. he of course didn't have the results, but i told him about +ebv,cmv (of course, everybody has those) he raised his eyebrow when i said my crp was 1.6 (then said estrogen would do that)oh, he said how old are you and i said 49, so he wrote down 50 (ok, my birthday is 9/30, but i'm not 50 yet!)

    it was like everything i said he had a pat answer for.

    i am thinking of trying a naturopath, any one had any experience with one?

    i will let y'all know what happens, and when i write my letter, i'll share it for imput.

    thanks again to all you tender hearts, it means alot to me.

    warmly,
    maggie
  12. orachel

    orachel New Member

    ...ignorant and antiquated theory right off his face. FM is a DISABILITY (though not saying everyone with it is disabled!!!) Even the dang FEDERAL GOVERNMENT, the biggest and slowest moving beaucracy on earth recognizes that!

    Needless to say...you need another doctor, period. If you need some resources to help find one, there are some great ones online (web md, etc)...I called over 50 rheumys before I finally got the right doc.

    And unfortunately, I only started this big HUNT for the right doctor bc of one very very bad Rheumatologist. It was 1st time I'd seen anyone for prob other than my PCP or Chiropractor, and I was looking for a diagnosis. Took my husband with me bc I was so scared and freaked out about all my crazy symptoms. So, yeah...this doc did diagnose me with FM...then he proceeded to explain to me and my husband that FM was a "MENTAL ILLNESS", and that he didn't treat it because he was full of patients with "REAL" problems, like arthritis. I was totally, uncontrollably hysterical when we left his office. And its taken me a few weeks to undo the damage that docs opinion had on my husband's understanding of my FM.

    So, start searching for a new doc, and when you call ask 1st if they take new patients, 2nd do they take your ins, 3rd do they have extensive experience in dealing with FM and CFS. I did that 50 times, went to see one more Rheumy (who was ok, but not great) and finally a PHYSICAL MEDICINE DOC (so call some of them, too...mine actually specializes in auto immune issues!) that I really like, and is pretty willing to work with me on treatment plans, options, etc.

    Oh, and finally....I think it was Mareeok who posted yesterday about this co that sells hysterical TShirts. Anyway, I told her the next time I had to deal with a difficult doctor, I was going to wear a T Shirt that says "Some days its just not worth chewing through my restraints!", and then look at him and go "GRRRRRRRRR....", and walk out of the office. That oughta have an interesting effect...I'll show them "mental illness"! LOL

    Best,
    Rachel
  13. yuckie

    yuckie New Member

    Hi Maggie,

    I have an ND on my team of doctors. She is the one who has resolved my IBS and works diligently to address the source of my many other CFS and FM concerns. My primary care doc and rheumy are addressing my pain and sleep issues. I highly recommend a good ND. Unfortunately, they are expensive and most times, insurance won't cover the costs. However, going back to something you said, about your rheumy not having your blood results. It is clear to me, as the other poster mentioned, that he suspects an autoimmune disease (otherwise, why the plaquenil and pred?). I really think you need to have a complete blood work up, including a lupus panel as well as RA, Sjogrens's etc...When I went to my first visit with the ND she looked very closely at my blood results before determining a plan. As we all know, blood results don't always reflect what's going on but in the case of most of the AI illnesses mentioned above it will a majority (90%+)of the time. The good thing about having your blood tests done before you go to the ND is that insurance will cover the costs if ordered by a MD (all of this is assuming USA, which of course you may not be). Once you have the results, the ND will be able to look and formulate a plan based on those results plus her own findings.

    On a more supportive note...hang in there. The rheumy I have now was my 4th try. Trust your instincts, whether your doc was dismissing you out of hand or it just seemed like it, that's the same in my book. Find a doctor that your comfortable with and that listens and explains. And to answer your question, yes, I think a ND is a great idea.
  14. orachel

    orachel New Member

    with everything you wrote re: other diagnoses and viral infections, lyme...all that stuff, absolutely.
    I just got a very abrubt, condescending and "nasty" vibe from the way maggiemay described his actions. Even if he had the best intentions (which I don't necessarily think is true), that is one SERIOUSLY SNARFED UP bedside manner!!!
    He didn't say "Maggie, I understand you've been diagnosed with FM by another doctor, but I'd just like to do some bloodwork or some other testing etc, to rule out some other things that could conceivably explain some of your symptoms and maybe make you feel a little better, OK?"
    I think if he'd said something like that Maggie might have felt a little better about what is basically the same message (assuming we say your post is accurate in his intentions, which is certainly possible!).
    And, it's also possible my own terrible experience might be coloring my perception here, just a tad (ya' think? LOL).

    Hugs to all
    Rachel

    And PS...how do you diagnose Sjogren's Syndrome? And how did you end up on plaq in the first place? Just curious, bc like you I am anxious to rule out any and all conceivable other diagnoses that may be affecting me. So far I've only had some basic blood work and some extra blood panels (I have elevate ANA's, but not high enough to mean Lupus, according to my doc) to rule out thyroid issues and such, cat scan, mri, and BUNCH of x rays. What else (and I realize you're not a DR., but seems like you know a lot about this) would be likely to assist in determining if other stuff is a problem?

    I'm seeing doc on monday, and going to DEMAND a sleep study bc I wake 10-15 times per night regardless of klonopin and multiple other sedating meds taken at night, and also some basic cognitive/memory testing, bc memory and focus have gotten SO VERY bad, so very quickly. Any suggestions for other stuff that would be useful? I'm also POSITIVE that I have CFS (match literally all the symptomology <is that a word?!>,) and think its possible I have TMJ also due to extreme face/jaw pain....

    I guess I'm askin for free medical advice! lol
    Would be interested in any input you have.
    Thanks!
    Rachel[This Message was Edited on 09/16/2005]
  15. aquabugs

    aquabugs New Member

    Sounds like he has a terrible bedside manner. I myself have been through quite a few rheumies in the past 4 years. The one before last told me I was probably just "a normal person with a few aches and pains and a little dry eye (the hallmark symptom of Sjogren's - I was using eyedrops more than 20 times a day just to try to keep my eyes from horrible dryness). I just this last month finally found a marvelous one in Houston.

    I should have worded that a bit better. Maggie is the one who knows how truly rotten the doc's attitude was. My main point was that whatever doc she has needs to perhaps investigate other options first before jumping to the conclusion it is FMS or anything else. I have to wonder though why this doc is thinking AI disorder if there was no blood work involved? Did he look at past lab results? There are other subtle signs the docs know to look for also. He really should have explained to her better why and what he was thinking. I do know that one of the symptoms in lupus and probably other AI disorders can be a low-grade temperature.

    Maggie, I hope you find a great doc if this one is not for you...but also remain open minded so that nothing is missed. These things take time to diagnose and time to get better.

    Rachel
    I just looked back and saw the rest of your message that i missed the first time. As for how I was diagnosed...it began as unexplained fatigue that persisted for months, then pain in joints. After that I developed an irritated bladder, migraines, very dry eyes, dry mouth and throat...a whole litany of symtoms when I had previously been very healthy. Many of the symptoms are the same as FMS or CFS or a lot of other things. Blood studies revealed moderately elevated ANA (antinuclear antibodies),elevated sed rate, anemia, elevated platelets. The PCP had no idea what was going on but based on the + ANA sent me to a rheumy. He did lots of antibody tests and none of the others came up positive. As a knowledgeable and experienced rheumy, he treated me on the basis of symptoms rather than relying solely on lab results. Apparently the AI things can take years to develop and the labs don't always relate in text book fashion. Plaquenil is the first line treatment for this disorder and he started me on that. After about 6 months I felt much better....much of the fatigue and pain was gone and I was able to function pretty much normally. The last rheumy I had before the present one took me off Plaq twice. He didn't believe I had Sjogren's or anything else AI. Both times, after about 2 months of being off Plaq, my pain increased ten-fold. I fired him and got back on Plaq. My new doc says it's probably Sjogren's plus fibro and is treating me very well.

    I hope I answered your questions. LOL Sorry this is so long. I guess I am a teeny bit knowledeable about this disease because I have spent so much time researching it to see what else I can do to get better. I hope this helps.


    ((hugs))
    Sylvia
    [This Message was Edited on 09/16/2005]
  16. Young71

    Young71 New Member

    I'm new to this group. I came looking for a support group because of one more bad experience with a doctor after 10 years of successful treatment for CFS. It took three years of seeing various doctors and developing more and more related symptoms before a diagnosis of CFS was validated. I met several nightmare doctors along the way, as well as several puzzled but supportive ones. Two of the early rheumatologists fixated on FM and would not diagnose CFS, although I had the full variety of related problems. Actually, after I was put on Clonazapam, which relieved my night-time body spasms so I could get good sleep, my FM symptoms (primarily tender points) went away! My other problems were severe enough that I couldn't walk a block because of fatigue and I spent four years using first a wheelchair and then an electric cart when I went outside. I was actually accepted for Social Security full disability without an appeal, retroactive to 1991. In late 1995, after trying many treatments, only two of which helped at all, I found Dr. Jay Goldstein in southern California. He is now retired. I was living in B.C. at the time. Dr. Goldstein tested me on a series of meds during one very long day and found two which seemed to help my symptoms. That night I had the best sleep in years. The next day, I told him "Dr. Goldstein, I feel too good to tell you which meds make me feel better!" He sent me out to walk around a mall for a couple of hours and come back late in the day. I was able to walk around with my husband considerably longer than I had been able to tolerate on my electric cart! He had me stay in the area the rest of the week and sent me home with appropriate prescriptions. My symptoms were largely relieved overnight! I subsequently stressed myself out with a move and had to try some other meds on his list, but I have been successfully supported for 10 years, through four moves, and found doctors who would work with this diagnosis and treatment. I still needed a long night's sleep and some rest during the day, but led a full and active life. Occasionally I just need an extra day in bed.

    Two years ago we moved across country. There was no problem getting my new PCP to continue to prescribe appropriate meds, as they are fairly common. But recently I have begun to suspect I'm sliding back toward more symptoms. Like many CFS sufferers I had a marked (25 lb.) weight gain shortly after contracting the disease. I had always been a small, slight person who sometimes struggled to gain weight, at just over 100 lbs,, 5' 2". However I was stable at 115-120 for a good while prior to CFS. I weighed close to 150 even after the meds controlled most of my symptoms. At one point I joined TOPS (Take Off Pounds Sensibly) and in six months of walking, gym, and dieting got back down to 115 lbs. This was in 1999. However I went back to work and couldn't keep up the demanding regimen of exercise. My weight crept back up and over 150. Since 2001 I have been trying just to get it below 150. I was faithful in working out at Curves for 2-1/2 years (with a year out because of other unrelated med problems). I lost a very few inches at first, but no other significant change. Finally, this summer, after my weight crept close to 160, after working with my PCP and a physical therapist, I quit Curves and joined a regular women's gym. After seven weeks of putting in double and triple my previous workout time, at a stepped-up level of exertion, I find my weight at an all-time high. I kept a record of my dietary in-take last winter, and it was clear that fat intake is not my problem. I do crave sugar, particularly chocolate and ice cream. But during this 7-week period I have cut back on sweets and been really careful in my diet. I continued to have occasional ice cream, but did not increase my intake. Yesterday I went in to talk to my PCP (who was really good at listening before she had a baby last winter; now she looks very tired and harassed and doesn't listen well). I am really upset that with a marked increase in exercise and discipline in food, my weight stays at the top. I seriously questioned whether this might not be related to the wierdnesses in metabolism that go with CFS. I have also been suffering more fatigue the past few months, even on days when I don't work out. I asked about possibly re-introducing one of the meds which had helped the CFS earlier but I had dropped, in trying to gradually cut back on meds. She lectured me on the fact that that med was intended for a different purpose and she wouldn't prescribe it. I explained again that Dr. Goldstein had identified meds that affect the neurotransmitters and prescribed them at low doses, and this had helped me in the past. She was adament. When I asked why my exercise/diet level was not affecting my weight, when I'm very careful with my foods, she snapped that it was a matter of portion control and dismissed me! She didn't discuss it at all. My breakfast and lunch portions are all pre-packaged and clearly marked on the wrappings. I buy 4-oz. and 6-oz. meat portions for supper and keep rice or potato portions small, along with green or spinach salad. I DO know what my ortions are! She simply didn't consider that I might not be fudging on amounts!

    Now I'm really angry and upset and thinking I really need to find a physician who is willing to consider Dr. Goldstein's theories, which have worked well for me for so long. I'm in a small town in New England and have no idea how to go about locating someone who listens. Unfortunately, four of the M.D.'s who've supported me so well through these years have retired, so I can't even get letters stating that support.

    Has anyone else had prolonged improvement, then slipped back? How has weight gain correlated with other symptoms? I'm really feeling like chucking the whole exercise thing, since I have charts for over a year showing week-by-week exercise time and weight, and my weight ups and downs (within less than 10 lbs.) don't seem affected at all by exercise or lack of it,
  17. Young71

    Young71 New Member

    I'm new to this group. I came looking for a support group because of one more bad experience with a doctor after 10 years of successful treatment for CFS. It took three years of seeing various doctors and developing more and more related symptoms before a diagnosis of CFS was validated. I met several nightmare doctors along the way, as well as several puzzled but supportive ones. Two of the early rheumatologists fixated on FM and would not diagnose CFS, although I had the full variety of related problems. Actually, after I was put on Clonazapam, which relieved my night-time body spasms so I could get good sleep, my FM symptoms (primarily tender points) went away! My other problems were severe enough that I couldn't walk a block because of fatigue and I spent four years using first a wheelchair and then an electric cart when I went outside. I was actually accepted for Social Security full disability without an appeal, retroactive to 1991. In late 1995, after trying many treatments, only two of which helped at all, I found Dr. Jay Goldstein in southern California. He is now retired. I was living in B.C. at the time. Dr. Goldstein tested me on a series of meds during one very long day and found two which seemed to help my symptoms. That night I had the best sleep in years. The next day, I told him "Dr. Goldstein, I feel too good to tell you which meds make me feel better!" He sent me out to walk around a mall for a couple of hours and come back late in the day. I was able to walk around with my husband considerably longer than I had been able to tolerate on my electric cart! He had me stay in the area the rest of the week and sent me home with appropriate prescriptions. My symptoms were largely relieved overnight! I subsequently stressed myself out with a move and had to try some other meds on his list, but I have been successfully supported for 10 years, through four moves, and found doctors who would work with this diagnosis and treatment. I still needed a long night's sleep and some rest during the day, but led a full and active life. Occasionally I just need an extra day in bed.

    Two years ago we moved across country. There was no problem getting my new PCP to continue to prescribe appropriate meds, as they are fairly common. But recently I have begun to suspect I'm sliding back toward more symptoms. Like many CFS sufferers I had a marked (25 lb.) weight gain shortly after contracting the disease. I had always been a small, slight person who sometimes struggled to gain weight, at just over 100 lbs,, 5' 2". However I was stable at 115-120 for a good while prior to CFS. I weighed close to 150 even after the meds controlled most of my symptoms. At one point I joined TOPS (Take Off Pounds Sensibly) and in six months of walking, gym, and dieting got back down to 115 lbs. This was in 1999. However I went back to work and couldn't keep up the demanding regimen of exercise. My weight crept back up and over 150. Since 2001 I have been trying just to get it below 150. I was faithful in working out at Curves for 2-1/2 years (with a year out because of other unrelated med problems). I lost a very few inches at first, but no other significant change. Finally, this summer, after my weight crept close to 160, after working with my PCP and a physical therapist, I quit Curves and joined a regular women's gym. After seven weeks of putting in double and triple my previous workout time, at a stepped-up level of exertion, I find my weight at an all-time high. I kept a record of my dietary in-take last winter, and it was clear that fat intake is not my problem. I do crave sugar, particularly chocolate and ice cream. But during this 7-week period I have cut back on sweets and been really careful in my diet. I continued to have occasional ice cream, but did not increase my intake. Yesterday I went in to talk to my PCP (who was really good at listening before she had a baby last winter; now she looks very tired and harassed and doesn't listen well). I am really upset that with a marked increase in exercise and discipline in food, my weight stays at the top. I seriously questioned whether this might not be related to the wierdnesses in metabolism that go with CFS. I have also been suffering more fatigue the past few months, even on days when I don't work out. I asked about possibly re-introducing one of the meds which had helped the CFS earlier but I had dropped, in trying to gradually cut back on meds. She lectured me on the fact that that med was intended for a different purpose and she wouldn't prescribe it. I explained again that Dr. Goldstein had identified meds that affect the neurotransmitters and prescribed them at low doses, and this had helped me in the past. She was adament. When I asked why my exercise/diet level was not affecting my weight, when I'm very careful with my foods, she snapped that it was a matter of portion control and dismissed me! She didn't discuss it at all. My breakfast and lunch portions are all pre-packaged and clearly marked on the wrappings. I buy 4-oz. and 6-oz. meat portions for supper and keep rice or potato portions small, along with green or spinach salad. I DO know what my ortions are! She simply didn't consider that I might not be fudging on amounts!

    Now I'm really angry and upset and thinking I really need to find a physician who is willing to consider Dr. Goldstein's theories, which have worked well for me for so long. I'm in a small town in New England and have no idea how to go about locating someone who listens. Unfortunately, four of the M.D.'s who've supported me so well through these years have retired, so I can't even get letters stating that support.

    Has anyone else had prolonged improvement, then slipped back? How has weight gain correlated with other symptoms? I'm really feeling like chucking the whole exercise thing, since I have charts for over a year showing week-by-week exercise time and weight, and my weight ups and downs (within less than 10 lbs.) don't seem affected at all by exercise or lack of it,
  18. orachel

    orachel New Member

    Thanks so much for info...and I never mind long posts (as so clearly illustrated in my own ability to shut the heck up! LOL). I'm a little concerned now, though as I have moderately elevated ANA, too...and while I don't dispute the idea that I have FM, it is VERY impt to me to rule out other issues as well. All treatments differ, after all...and my symptoms are SO severe and started so suddenly, and no fm treatments are working at all, so far...Sigh...will talk to my doc abt more blood work on Monday. So thanks for the heads up!

    Rachel
  19. springrose22

    springrose22 New Member

    To be honest, this man sounds like an inconsiderate,UNEDUCATED, jerk. He needs to update his information A LOT!!!!! Get a new Dr. There is a lot of information online for you. I am not quite as familiar with fibromyalgia as I am with CFS. However, a group of Drs. led by Dr. Bruce Carruthers, from B.C. Canada published the Journal of Chronic Fatigue Syndrome, Vol. 11, in 2003, which has been called a "medical milestone" by many Drs. throughout the world. Look it up online, and as I said, there are many other sites which can be of great help to you. The above-noted Journal should be in every Dr.'s library, though. Take care of yourself, do everything SLOWLY. Marie
    [This Message was Edited on 09/16/2005]
  20. busybusymom

    busybusymom New Member

    I think many of these idiot doctors go into medicine just for the money!!! I've had the same problem with many that I have seen.

    I am so sorry for your bad experience. Just KEEP ON LOOKING!!! There are some medical providers who do believe in us and really want to help.

    Jennifer