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Really BAD advice from my doctor! Can anyone else relate?
13 Replies
iliveinpain - February 7

The last time I saw a rheumie turned me off of them completely. I'd gone from doctor to doctor without anyone helping me. My last rheumie was, Dr. Cary Dachman, and I'm giving his name here to warn others, sorry if anyone is associated with him. He basically made me feel the fibromyalgia I was suffering was MY own FAULT. My diet was bad, I didn't exercise, blah blah blah. I know that we need to exercise, even if it is gentle walking, which I do. I also know we have to watch our diets, which I do. But this man, put the most unbelievable pressure on me and made me feel like I was a failure and a complete loser who didn't deserve medical care since I couldn't keep up with his prescribed regimen. He wanted me to do 45 minutes of hard aerobics, 5 times a week. um, helllloooo???? I don't know about you all, but I can't do 5 minutes once a week of hard impact aerobics, or I'll be in bed with pain for 2 days afterwards. His goal was to get me completely "Medicine Free" which, I must admit sounds like a perfect dream come true, but not a reality for any of us, not even close! As I'm sitting here with exhaustion and pain today that is so bad I feel like crying and wondering how I'm even going to continue to work 8 years until I retire, it just got me thinking about this, and got me so angry- and wondering how long we have to put up with ridiculous so-called medical professionals who tell us these kinds of things, when really, they should know better. Just venting I guess.......thank for listening, if you did.

 

kvc33 - February 8

I do know that idiots like him exist, I've just never met one. He has zero understanding of fibro. Each patient is different and if exercise is to be used it must be graduated exercise that is tailored to that patient. One size fits all never works with any disease. I don't think a healthy person would even follow his advice. Most people have a life, they aren't going to spend it just exercising. He needs to get a brain.

 

January - February 14

I went to a new "doctor" years ago, looking for help when I was feeling so incredibly weak I could barely stand up. Getting to her office was a major effort, and I was also in a lot of pain. She barely examined me, took a quick, incomplete history and then commanded "I want you off all your medicines, and I want you walking 45 minutes every day!" If I hadn't been so sick I would have laughed in her face. (And, at the time, I was taking antidepressants which you really should NOT just quit….)

I think that to go from very little exercise to 45 minutes of "hard aerobics" 5 times a week might even be a little dangerous… Shouldn't you carefully work your way up, starting with what you can handle? In physical therapy, I was given very small, easy, core-strengthening exercises to do by someone who understood fibro - they were so minimal, I was thinking "oh, this is too easy!" So I over did it. Instead of doing 10 reps, I did 30! Because I could. And I felt fine - until the next day when I was really sore. My Phys. Therapist said that was typical of fibro patients - who always want to "do more!" He said we really have to take it slow, and STOP before we get tired, BEFORE we over-do it! We should not be "pushing it." So your doctor sounds like he doesn't know much about fibromyalgia…. and I don't think "hard aerobics" are recommended for most people unless they are good and healthy!

As for being "medicine free" -- that sounds great too. But, like you, I don't think I'll ever be medicine free. I keep the meds as low dose as I can… but I do a lot better on them than without them.

Hope you find another doctor who knows a bit more about this disease!

 

go4it - March 21

I'm glad you were able to vent, and am sorry for those that listening to the doc doesn't work. I was diagnosed with RA, Fibro,Sojgrens, and Reynauds about 2 years ago. The doc immediately put me on 3 different pills. After the first week,the side effects were so much worse than the pain so I stopped and got on the internet and started my research. Today, I can tell you that because of my diet changes - all natural, no sulfites, processed foods, fresh fruit, no nightshade veggies, I am drug free. I even found sulfite free wine (well low dose sulfite); I exercise 2-3 times a week, low impact- walk as much as I can or feel like it-no pressure. Went to my Rheumy last month, and he wrote things down in my records closed the file and said, I can no longer document that you have full blown RA. You carry the factor but you no longer show signs of it. Please continue to do whatever you are doing, and come back to see me in 4 months. Ok, what am I doing? Every morning, I take 4-5 Omega-3, Folic acid, B12, Vit D, 1 Aleve, Acidophillus, Glucosamine with MSM, a hard boiled egg(selenium), and greek yogurt every morning; Melatonin at night. That's it. I feel great, can move.. I do have moments of Fibro - usually around my monthly cycle. Did research on that too, which blew my GYN away. Found out it's the sudden decrease of estrogen so i think next month may try the soy/tofu test to see if that helps. Remember, we were created naturally. Why not get back to it. Hope this helps and I'm sorry others have not had good experiences. Do the research. Nightshade veggies promote inflammation. Focus on anything anti-inflammatory. After a week or so, you will see a difference. Good luck!

 

Jocelyn - March 21

My advise, like, January, you need to find a physical therapist that will help develope a plan for you. I did the same things as January, I wanted to get better so badly, that I did 30 of different things instead of 10 etc. I went into a full blown flare! I will never do that again. I am sticking to my gradual increase. Just because you can do it doesn't mean your body won't scream at you the next day.

You need to find a new Rheumy...yours is no good. Your doctor has NO clue about fibromyalgia...

It is good to try to stay on as low as you can on the meds, but let us all face it, some can and most can't.

 

valjoy - March 24

Dearest iliveinpain, I know exactly what you are talking about, I have had it just done to me recently after seeing my local GP for one year I asked her if I could be referred to a Rehumotologist, or someone who can MANAGE this problem for me and she said "no way, it is only hormonal problems" I have been taking her hormone replacement for one year, yes it has helped a LITTLE but not nearly enough. I was told to excercise and run for 1/2 hr daily, jog around the block. How the hell can you do that when you can hardly walk some days, please tell me? It makes a Saint swear!!! I felt so depressed when I arrived home, I went to the Dr. over the road from her (the opposition) and the old Dr. said "my dear girl, you do need someone who can manage this serious problem" so wrote out a referral to a specialist. What a lovely old Dr. he was, I have to wait 3 months for my appointment but at least I am in! I think this happens to lots of people. Please don't give up, keep trying other Rheumotologists, you will get one eventually. Keep strong, you have not got this on your own. Love, valjoy. x

 

valjoy - March 24

Dear January. Some of these Dr's have NO idea. I have read that if you are exhausted and having a bad day JUST REST! If you can manage it on a better day, have a little walk, Dr's don't know because they don't suffer from it. x

 

kasbah - March 24

Dear Iliveinpain

I'm wondering if it is a Rheumotolgist you saw! this man sounds like a dangerous ignoramus and perhaps a complaint would be in order. i cannot imagine why he wants to to do such drastic exercise which would most likely do you harm and cause a bad flare up. What a horrible experience. I don't think bad practitioners have a clue about the distress they cause. My rhuemotlogist suggested getting a Wi-fit and very gradually increasing the amount of the exercises i do. this is good advice i think, unfotunately i can't afford one!! Drugs can be a godsend when tailored to you, so why are they necessarily considered bad by that idiot? i have benefitted from Pregabalin for example.

Please don't see that unprofessional "professional" again. There are good Rheumies, I truly hope you find one and get the good informed help you are entitled to

 

Eenerme - March 30

That's interesting how I've done exactly what your doc told you to do. I dropped 35lbs, became totally fit n trim, changed my diet completly and here's the best part.... I STILL have the same amount of pain, I'm STILL on the same meds and I STILL spend at least 3 solid days in bed. Oh sure I look better but I'm sure all the folks w/fibro would much rather FEEL good than to look good... I dont know.

 

January - March 31

Hi valjoy - what an interesting post. Don't we all have similar experiences with doctors! It makes me angry that we still have to pay, even though we get no help. Everyone can't afford to go see 20 different doctors to try to find some help!

I think the younger doctors are not as educated as the older ones were about pain and suffering. Maybe they haven't seen enough of it yet either. The younger ones think "there's a pill for that!" So all they do is throw pills at you. OR they expect you to diet and work out and get healthy! (As eenerme points out that doesn't necessarily work!)

The older drs. knew that pain is complicated - I think they took more time to try to diagnose what the causes were, and were better about listening to patients. And also, pain was treated humanely. It really isn't any more. You have to look to find a compassionate doctor. They are still out there, but I'm afraid they are a dying breed.

 

bluesbrrd - April 10

I think January is right on the money about the older doctors. The younger ones get brainwashed by the pharmaceutical manufacturers - even their training is sponsored by the pharmas, so it is insidious. All of the new "miracle" drugs I tried had terrible side effects and didn't help! I take very small doses of a few generic meds that have been around for decades and are proven to be safe. My rheumy told me a story about one of his pharmaceutical reps contacting a patient directly - a terrible lapse of ethics! He was absolutely furious with her!

Bad doctors! I'm sure each of us could write a book! Before I got fibro I could ride my bike 15 miles, and I could surf, which is very hard on the upper body. After I got sick 25 years ago, even when I got better I could never ride a bike, or do high-impact aerobics again. I could walk fair distances, and I could do some of Jane Fonda's low-impact aerobics. But no way anything else! And 12 years ago, after 4 surgeries for endometriosis I had chronic pelvic pain and could barely walk. It took about five years to recover from that! To me, a walk through a large grocery store is the most extreme workout I can get! And there are many days I wouldn't be up for that. I still have severe problems sitting up for more than a few hours, so my time out is limited, even if it isn't strenuous. If a doctor told me what yours did I would have laughed in his face!!!

Besides, I have terrible pain in my feet after being on them for any length of time. Feels like hammers have been pounding on them! So no aerobics for me! Massage is like getting a workout, for your whole body! It works wonders!

My Rheumatologist is the same one who diagnosed me 25 years ago - he is a very compassionate man, and realizes his one mission is to reduce as much suffering as possible. When I moved back, I went right back to him - Dr. Frank Harper, in Charleston, SC. We just have the nicest chats when I go in to see him - there's no way you're going to leave his office not feeling better, even if it's totally mental and not physical! Bless his heart!

My ob/gyn did not believe I had endometriosis, even though it was putting me in a fetal position for weeks! I insisted after months and months that she do exploratory surgery, which confirmed MY diagnosis! That woman took years off my life! The day before my surgery she told me in her office that she doubted she would find anything wrong! I believe she was one of those people who have a bad attitude toward people with fibromyalgia. That's the only conclusion I can make for her terrible attitude.

I finally went to the endocrinologists at George Washington University Hospital, who realized, when looking at the picture she took during the surgery, that I had a really bad case, with lesions all over my peritoneum. I was still attempting to work full-time, but that just killed me! I probably would have been able to work past age 42, when I retired on disability, if I hadn't had that in addition to the fibromyalgia. The good doctors tried their best, but couldn't fix me either!

Now I've seen research that 30% of women with endometriosis get fibromyalgia at some point. Endo is an immune disorder, which I didn't realize until later. It's basically a monthly assault on your immune system, because you are bleeding internally and your body fights that like it would an infection. I was not diagnosed for 25 years, even though I had severe cramps starting in high school. I was told all that time it was IBS! It was around my colon, so it AGGRAVATED the IBS.

Our bodies are so unbelievably complicated, and most of it you have to figure out by yourself. But can you imagine what all the women suffered before the last 50 years, before modern medicine was available?? I don't know that I would have lasted too long with such pain and no relief. The endo pain was much worse than the fibro!

 

mowo2007 - February 17

I would like to take a moment and defend this doctor. I am not far into my treatment, but I think he is a great doctor so far. After many many doctors, he is the first one to officially diagnose me with Fibro and actually explain the mechanics of it and give me a treatment plan that doesn't consist of throwing pills at me until something works. Yes he recommended the 45 mins a day to me too, but he said he'd like that to be my end goal. He knew it wouldn't be an overnight process. The exercise helps to boost endorphin levels, which fibro patients are typically low in. These low levels lead to pain and a lack of restorative sleep causing even lower levels and in turn more pain. Increasing endorphins will begin to help break the pain cycle. I know it isn't easy, but like Dr. Dachman told me... "start with a minute today and increase by another minute each day after" FInd support around you to help keep you motivated, because when you're in pain exercising is the last thing you feel like doing.

 

atara22 - February 23

I agree with January. Compassionate doctors who actually listen and don't make us patients feel rushed are few and far between. The older generation are far more patient.

 

January - March 25

It's a whole new world. I think that healing requires compassionate treatment and carefully listening to the patient. I wish people would speak up more about what works and what doesn't, and demand better treatment!! Write letters to the medical boards and insurance companies when you are treated badly. We are all paying the bills for doctors who don't do much.

It seems Big Pharma is running most medical schools, research and patient treatment these days - they control the funding - and they aren't about healing, they are about making money. (A lot of enlightening videos on youtube.) Very sad...

 

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