Fibromyalgia without pain ?

[Dechi]

Hello,

I have seen a rhumatologist with many years of experience with CFS and fibromyalgia last week. Since I was diagnosed by a general practitioner, we wanted to confirm his diagnosis and possible get help with treatment.

So my CFS was confirmed and on top he told me I had fibromyalgia after testing for the tender points. I think I had 14 or 16 of them. But I have no pain, except postural pain from not moving enough. He said I did have pain because I was weak in the leg and body and felt lactic acid in my muscles basically all the time. He said that is a form of pain, which to me is not. It doesn't hurt, it makes my muscles weak and numb after a few seconds.

Do you think he could be right ?

 

[Effi]

hi @Dechi I always love when a doctor tells me that I'm feeling stuff I'm not feeling. (*NOT*) I think a tender points examination is crucial to a fibro diagnosis, but I've had them within a context of CFS too. I think in CFS they do it to see if you have achy/tender lymph nodes. From the ICC:

Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion. e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation.

The muscle weakness and lactic acid to me sound very much like CFS. From fibro patients you hear things like actual pain (to a point where it's unbearable) and hard/stiff muscles. I'm not sure if I've ever heard a fibro patient saying they don't experience pain at all. In CFS that is quite common.

There's a big overlap between fibro and CFS though, so I guess it's not an easy diagnosis. Maybe you could consider getting a second opinion somewhere else?

 

[Dechi]

@Effi Thanks and yes, I will be getting a second opinion in september, hopefully. I have never heard of fibro without real and tangible pain either. I have no swollen lymph nodes, I just responded to the fibro tender points with real pain. It really hurt when he touched me there, enough to make me jumo on the table. But no pain if no touch.

 

[Daffodil]

@Dechi what does it feel like with the lactic acid? when I originally read your post, I thought the doc was wrong but now I think he could be right. maybe later you might develop pain but it is the early stages of fibro?

how long have you had CFS?

 

[Dechi]

@Dechi what does it feel like with the lactic acid? when I originally read your post, I thought the doc was wrong but now I think he could be right. maybe later you might develop pain but it is the early stages of fibro?

how long have you had CFS?

Hello Daffodil, I have had CFS, early stages, since march 2013, and full blown, january 2015,

The acid lactic feels like a deep weakness in all my muscles. When my symptoms are more under control, I feel weak in my legs, mainly, and arms. When my symptoms worsen, the feeling will be in any sollicited muscle, even my fingers or my jaw. The sensation appears after a few consecutive seconds of using a muscle, for example holding a hair dryer, or writing, will become too hard and I need to stop or take breaks. The lactic acid feeling is the sensation " normal people " experience after holding a heavy object in their arms for a long time, for example. In my case it's after a few seconds.

I'll check into esrly stages of fibro. Never thought of that. Thanks !

 

[Daffodil]

@Dechi ohh that might explain it..you are still early in the disease.

lol everyone will say I sound like a broken record by now, but if I were you, I would high tail it over to dr. Kenny demeirleir. you have a good chance at getting well, I think. I really would not waste time with anyone else. I did that for 20 yrs.

 

[Dechi]

@Daffodil Belgium is a little far from Canada. I'll keep that in mind for the future, if nothing else works.

 

[TigerLilea]

The sensation appears after a few consecutive seconds of using a muscle, for example holding a hair dryer, or writing, will become too hard and I need to stop or take breaks. The lactic acid feeling is the sensation " normal people " experience after holding a heavy object in their arms for a long time, for example. In my case it's after a few seconds.

That's CFS, not FM. I get that all of the time when I do anything using my arm or leg muscles. However, that kind of pain goes away when we stop what we are doing. FM pain is all of the time even when at rest. I've had CFS for over 25 years now and never went on to develop FM even though my muscle pain started in the second year of CFS.

 

[TigerLilea]

@Dechi ohh that might explain it..you are still early in the disease.

lol everyone will say I sound like a broken record by now, but if I were you, I would high tail it over to dr. Kenny demeirleir. you have a good chance at getting well, I think. I really would not waste time with anyone else. I did that for 20 yrs.

Has anyone actually been cured with his treatment? He uses a lot of antibiotics long term which seems to me like it is going to cause even more problems in the future.

 

[Daffodil]

@Daffodil Belgium is a little far from Canada. I'll keep that in mind for the future, if nothing else works.

you can see him in reno too.

see, I don't think you understand how bad this disease can get if left untreated or if treated incorrectly. many on this very message board have died - many by suicide.

in the early years, it seems to be tolerable but often does not stay that way.

I don't want to scare you but ....its a lot more serious than it may seem right now

 

[Daffodil]

Has anyone actually been cured with his treatment? He uses a lot of antibiotics long term which seems to me like it is going to cause even more problems in the future.

I have told my story many times on this board. I was bedridden and about to suicide. now, i am looking for part time work. at 45, i can feel like i might start really living again one day.

he uses probiotics to help prevent problems with long term antibiotic use. i am sure things could still happen, but i will take the risk any day. i wouldn't wish the hell i lived through on my worst enemy.

before i saw this doc, i crawled all over the place, vomiting and feverish, paying $1000 a visit to see American docs. took high dose antivirals..even HIV meds cuz my cd4 count looked close to AIDS. NOTHING worked more than maybe 5 %

of course, i tried a truckload of vitamins supplements and IV stuff too...that's the only thing you can get in Canada...IF you're very lucky! I'm in Canada too

 

[Dechi]

I am on nimodipine now and it has helped. I am not giving up on finding a treatment. I am actively trying to get better.

@Daffodil , apparently you have a better of remission if you get it while you're older. I got it at 46, so hoping I will be able yo manage it, but I am very aware of the seriousness of this horrible illness. What you're saying is true, it needs to be addressed with great care.

 

[Daffodil]

@Dechi....you have a better chance of remission when you are young and of course, if you haven't had it that long. young people have more stem cells and such.

however, I am 45, have had it 22 yrs, and am getting better! how much better I will get, who knows...

 

[Dechi]

@Daffodil I wish you a 100% better!

 

[Daffodil]

thank you! I wish the same for you!