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T Khan
T Khan, Doctor
Category: Medical
Satisfied Customers: 1097
Experience:  UW Med School/UCLA Training/USC Faculty. Full Spectrum Family Medicine - Adult, Peds, OB/GYN
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This is the 3rd posting re my sleep.

This answer was rated:

This is the 3rd posting re my sleep. Sometimes my hands swell and go blotchy, particularly when by my side. I have to keep my legs up and rest my arms on cushions, outstretched, sort of level with my shoulders. I was diagnosed with ME (Post Viral Synd) 19yrs ago. During that time I have improved (although each week and day my well-being has been variable) and 3yrs ago had built up enough stamina to regularly walk 2hrs a day at some pace(inclines were a problem but often manageable). Now I can only walk 30/40mins, slowly, and NOT on any incline. I have a hiatus hernia, underactive thyroid (regularly tested and treated), tinnitus, seasonal allergies and am currently being examined for breathlessness. I am overweight but gradually losing (14st+ at 5ft 5ins, 59yrs). My only relief is while my partner massages - with great pressure (he uses so much pressure his hands hurt after a short time). My knees feel particularly bad on stairs etc. I have had all these symptoms on and off over the 18yrs but usually I recover enough to enjoy times of reasonable, aometimes good, health. I have not had a good spell for so long and am wondering if these symptons could be something that has been missed. Due to the tests I've recently been having I've discovered the Ibruprofen I've used to try and help has caused my blood to thin.
Welcome to JA - sorry you are going through this, let me opine.

Please clarify what your question is for the experts?
Customer: replied 7 years ago.
My question is:- Can you tell me what are the possible causes of the aches and pains in my arms and legs?

Okay, great, thanks for that information.

Let me first tell you that his does indeed sound like fibromyalgia (FM) but this is a diagnosis of EXCLUSION. Meaning that other more scary things have to be ruled out first.

You should have the following done:
1) HIV
2) TSH For thyroid
3) check for celiac disease (like thyroid can present with vague symptoms)

And most importantly, this could be polymyalgia rheumatica (PMR). PMR is often confused with FM and the problem with PMR is that it is an auto-immune disease that can truly be debilitating. \

For this you should have the following tests done:

If, and only if the above and a depression/anxiety/stress screening questionaaire are negative can the diagnosis of FM be made.

For FM, I have found that many of my patients here in the UCLA system respond well to the following medicines:

- Lyrica (pregablin)
- Neurontin (gabapentin)
- Cymbalta
- Elavil.

Thus If the workup for other causes is negative, I do recommend a discussion with your doctor about a trial of one of the above medications.

Does this help?

Customer: replied 7 years ago.
Thankyou for your answer. I am concerned as, I believe, Fibromyalgia is not always an accepted illness by some doctors. I have suffered from depression, mostly brought about by the frustrations of having a chronic disease. I would appreciate your thoughts on these comments.

You are correct in you statement that many docs don't feel comfortable treating FM. Many feel it is a psychological diagnosis with no medical basis.

That said, there is a rising pool of data that links FM and chronic fatigue syndrome to a virus:

So, if you feel your doctor is not adequately addressing your needs, provide him/her with some of the above information about XMRV and maybe that will help. If not, ask for a new doctor as you need a doc who is up to date on the current literature.

Does this help?

Customer: replied 7 years ago.
Again, thanks for your info. I tick almost every one of the boxes for FM on the EXTENDED symptons list. My doctor has been totally supportive and is great in every way except when I mentioned FM last year. I felt this was brushed aside so I am more than a little concerned about approaching the subject again.
I have one more thought to put to you. It would seem FM sufferers can not take any pressure whereas I am the opposite. As I stated earlier, the only time I get relief is when my partner puts excessive pressure on my muscles. Having said that, I am always relieved to take restrictive clothing such as socks off. Any further thoughts?
Some FM patients have issues with pressure as you mention but not all which is why this is not part of the diagnosis of the disease.

THe bot***** *****ne with FM is that it is a relatively new diagnosis. Recall that the link between lung cancer and smoking was not recognized by the American Medical Association and many doctors until well into the onset of lung cancer.

Analagously, FM being such a new diagnosis, many docs don't feel comfortable believing it since there's no objective marker of disease (kind of like depression). So even though your doc may be a great doc, if he/she isn't managing your concern, you really should find a more up to date doctor to work with.
Customer: replied 7 years ago.
I am fully aware of the problems a new diagnosis having met with great difficulties - and meeting more than my share of poor doctors -before a diagnosis of ME was given many years ago. It is, perhaps for this reason, I doubt I will change doctors given all the associated problems that would incur. I will take this info for my doctor to check-out. She is up-to-date with everything else, maybe, just maybe, I read her incorrectly.

One thing has struck me though. Could I have had FM all these years and not ME? If so would there have been treatment? Is there a difference?

I promise this is my last posting:)

You may have had FM all these years, sure. The treatement for FM is controversial - some feel it helps some don't. So honestly it may not have made a world of difference.

Good luck!

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