dr. advice wrong

[fred466]

I've had fibromyalgia for many years now, and, unless I've been misdiagnosed, the dr.'s advice about exercise and stretching is totally wrong. I've tried everything from regular exercises to yoga, and none of it helps, and most of it makes my condition worse. If I do five or ten sit-ups, I get painful diarrhea for a day or two afterwards. I mostly walk a lot these days, I can tolerate that, and I wear heavy shoes while doing it. "Normal" exercise only makes it worse.


This discussion is related to do I have fibromyalgia? .

[jessica530]

I am in the same boat as you right now. Exercise is so painful for me to begin with and it really doesn't help me either. I do a lot of stretches because that is about all I'm able to do without feeling like I've been hit by a truck. I hope you are able to find some relief from the digestive problems as well.

[fred466]

Thanks for your comment, Jessica. I've been told to do exercise since this first started, and it always backfired. It's strange that doctors think they know what to do when they don't actually have this disease.

[k9helper]

Hi Fred,

I think I've had fibromyalgia my whole life or very close to it. I've only been diagnosed for about 4 years but after years of being told it was either all in my head or the doctors ruling out every other ailment( and I do have others),the symptoms they used to diagnose the fibromyalgia are the same ones I've had my whole life. Weird, same symptoms, only now they believe me and give it a name. [email protected]#[email protected]#%$%$%^!!!!

Anyway,since it does run in my family and I suspected all along that I had it, I've been able to do lots of research.A small silver lining. I also have a scientific/medical background.I'm not a doctor I'm a veterinary technologist. Animals are not people I know but the body systems for both are very similar and at least I understand the medical mimbo-jumbo and big words the doctors like to use. lol It really throws them off when you can understand them and talk at their level. Hee,Hee

I'm  telling you this so you will not think I am just blowing smoke when I share a few things  with you. I hope you don't mind the information about me or the sharing?


I too have the same problem with exercise and always have had. I always recovered a lot slower than friends in school. I would be extremely tired and sore -always told I needed to do more and just suck it up. Yah right. It sometimes will make me feel physically sick,have diarrhea afterwards, be in pain for days,run a fever etc the list goes on and on. A few things I have discoved :1. I have reactive hypoglycemia-blood sugar drops and rises more than normal based on what I eat. I also noticed it drops rapidly when I exercise. Could this be part of your problem as well? It does contribute to being extremely tired.
2. I am hypothyroid and have Hashimoto's thyroiditis-also make you tired and sore-some symptoms also associated with fibromyalgia and will make your fibromyalgia worse if not treated. Have you had your thyroid tested? 3.Lyrica is my new best friend. Have you tried it? I can give you a list of meds I'm on that help me if you are interested? 4.Don't dismiss alternative treatments. By this I mean I also have massage, go for something called IMS and see an osteopath all on a 2 week rotation. Love all of them, they have all been as or more helpful than all the doctors and drugs combined.

I have a theory about why exercise hurts us so much. Fibromyalgia is a central nervous system disorder.( this is now known) Exercise is a type of stress. Fibromyalgia and stress of any kind do not go well together. Exercise registers in the brain as stress and the brain sends out signals to the body to react to the stress( threat).Your body produces a sudden burst of cortisol, the "fight or flight" hormone.This hormone is not bad.However, I think in people with fibromyalgia it is already present in higher levels than in normal people so when we get stressed and have another burst of it ,it produces extreme symptoms in us. It is the hormone that is partially responsible for ,proper glucose metabolism,regulation of blood pressure,insulin release for blood sugar maintanence,immune function,inflammatory response, to name a few. I think it's role in inflammatory response is partly why we hurt more when we exercise. I also think that because it is present in higher levels in us( my opinion-have not found any research on this yet) that it takes the body longer than normal to return to some level of homeostasis.Which is why we hurt for days and not hours. Also since fibromyalgia is a central nervous system disorder people with it feel pain more intensely than a normal person( known). Our central nervous systems are more highly charged and react more intensely and longer to pain. Pain = stress= more cortisol = inflammation=more pain=more stress= ......., you get the idea. Again it takes us longer for our nerves to calm down,cortisol to clear out  and our body to return to a level of homeostisis.

Anyway there is more I could share but you are probably sick of reading by now. I will say in closing that I am now 41 yrs old.I am still able to work full time ,have a family and pets, I look after a garden( 2 acres worth), jog 5 km 3-4 times/week,do yoga and the eliptical. I get up every day sore and tired and I go to bed every night sore and tired. I have extreme trouble sleeping and never feel rested. I miss days of work due to pain and fatigue. I miss family time because sometimes my body just shuts down and I fall asleep no matter where I am. I forget things and have a lousey memory. I get discouraged,depressed and angry. I get sick of having to justify myself and my ailment to others who don't get it because on the outside I look normal. Then I think to myself it could be worse. Yes I am all of the above but I also have a lot to be greatful and happy for. I'm not perfect but I am alive ...beats the alternative ,don't you think.

With you in fibromyalgia,

k9helper

[fred466]

I just read your answer, so tired mentally right now that I will give you a full response later. Just wanted to acknowledge the time and thought you put into your response, will give detailed attention to it later.

[fred466]

I've had FMS for many years now, they've tested for diabetes, and I think for thyroid problems also. Still, I have a question to you about thyroid problems. For a long time now, (and this symptom has gotten worse over time) I've noticed that my throat "cracks" if I move it with my hand, (near the adam's apple), and it feels like there's a "lump" or hard object behind the throat/adam's apple area. Is this related to thyroid problems or not? Don't ask me about what doctors say about this-they don't listen, which is the only reason I'm asking you in a forum like this.

[jessica530]

If this were a few years ago I would have been able to put up with exercising but now the pain has gotten so intense that movement hurts all together. I would like to see a doctor who actually suffers from FMS because until you've experienced what its like, dont tell me exercise is the best treatment for it. I think that pain is worse for some people than it is for others, so different treatments are required for different people. What works for one person won't necessarily work for another. I'm sure if I continuously pushed myself to the extreme I would be able to exercise like people tell me to do.

[fred466]

The last thing you wrote disturbed me, because you said that if you push yourself hard enough you might be able to exercise more. This is not true, and I was told this garbage about "pushing yourself" many years ago when I first got this disease. I can't believe they're still saying this. I've tried pushing myself, I've pushed myself so hard that it only became worse and worse. Don't try it. It's the medical profession that is lazy, not you. They are the ones too lazy to do their job.

[k9helper]

Hi Fred,

I hope some of the stuff I wrote was helpful to you. As for your throat the cracking what you are hearing may be due to something called throat crepitus. Crepitus just refers to the cracking,popping or grinding noise or sensation that can sometimes be felt/heard around joints.( I have it in my knees and shoulders.) It may be a significant symptom or completely benign.It may be your thyroid cartilage you are hearing when you push on your throat. GERD-gastroesophageal reflux disease  can be another cause of this. This one can be dangerous if left untreated. I've heard of people developing the cracking sounds after viral or bacterial infections or trauma to that area. Globus is the term given to the sensation of a lump in the throat. People with fibromyalgia are more sensitive to feeling everything (central nervous system disorder) so what others may not even notice becomes a real irritant to us.

Having said that the thyroid gland and the Adam's Apple are very close together ( thyroind sits on top ot it but just slightly down.) It is possible that the lump you are feeling is your thyroid. A good doctor ( perhaps an ENT) could palpate this area to feel for lumps. The next step is usually an Ultrasound guided fine needle aspirate( FNA) to collect cells from it to send for histology. You can have a lump and your thyroid blood tests come back normal. I had this done about 2 years ago now and the discovered I had Hashimoto's thyroiditis -had a hemi-thyroidectomy done. Ironically, the treatment for this is to go on thyroid medication...I've been on thyroid meds since I was 17yrs old. ( fate has a twisted sense of humour)

If they have not already tested your thyroid ask them to. They usually start with a TSH test( thyroid stimulating hormone ) this is not enough. I can go into why if you are interested later. Have them also check your levels of T4 and T3.  

Regardless I would continue to hound the doctors until I got a satisfactory answer. Besides thyroid problems there are the scarier things to worry about , like throat cancer or thyroid cancer. Get a second opinion please. Doctor's are not God nor are they infalable. Trust what your body is telling you.

Also frustrated by doctors,

k9helper