muscle pain and weakness

[Tanya N.]

I'm 51 yrs old woman. I've suffered from fatiague and muscle pain all my life. 12 years ago I started having strokelike episodes. I've had a muscle & skin biopsy, spinal tap,emgs,etc. Most test were neg.  I'm very excersise intolerant. I also am having a very hard time going up and down the stairs and sitting down and getting up from a chair.  

Last month Things got worse, I'm having alot of muscle pain and cramping,(the cramping is a new symptom)in my whole body. I'm very tired and it hurts just to touch me.

The worst pain is my hip or side of my bottocks and my thighs. Other symptoms are salt craving, no thirst at all, sudden drop in libido.
I went to my PCP and he did blood work.alkaline phosphatse & rbc were slightly elevated, ana titer was neg, cbc neg.

I'm in alot of pain and need help , but with all this testing where do I go from here?

[Tanya N.]

Howdy!,
Lizzy, you have bee through alot, and I'm sorry for that and you'll be in my prayers. I have recently think I figured out my problem.  The writer who told me to see an endochrinologist was right. Even though I've seen many, I had to go back and rethink things that were missed. I have a crushed pituitary and empty sellar. I found a web site of people like me with all my strange symptom including muscle weakness and leg pains. So I'll be going for more test soon and hope this is the problem. There are still caring doctors out there, not as many as the uncaring ones, but..... Please e-mail me if you want to talk ***@****.
Loneoak, there are so many things your muscle  problems could be from, you need to see your PCP first and then specialist, like neurologist and endochrinologist.
The best to both of you!

[lizzyh]

I am 55 and am presently being treated for ADHD/Anxiety.

The past few weeks I have been experiencing aching in my muscles daily.  Kind of how you might feel if you were coming down with the flu.

I have been taking Advil, Allieve and Aspirin.  Nothing is helping.  I haven't been sleeping well for several months.  I have been atributing my pain to lack-of-sleep.  I don't understand why nothing seems to help ease-the-aching.

I haven't been to my Doc yet for diagnosis because I have been hoping it would go away on it's own.  

Just wondering if this has happened to anyone before.    Thanks

[loneoak]

I guess this is really to "tanya". I, too, suffer with intractable muscle pain. My diagnosis 10 years ago was "peripheral neuropathy with autonomic involvement, fibromyalgia". My symptoms are exactly as those with MS except mine are constant. I've seen only one neurologist & one Internal medicine MD. I'm a nurse of 27 years & I've given up on all MD's! None seem even remotely interested in why I suddenly went from being physically strong & healthy to a weak, muscle atrophied, skinny & incontinent woman. I figure if they don't care then neither will I. I am the sole support of my family so the only thing I can focus on is sucking it up & getting myself to work everyday. On my days off, I look forward to 20+ hours of sleep. I, too, crave salt & find that it helps give me a bit of energy so I consume mass quanities. I take a lot of nutritional supplements. But, the reason I'm writing this is to say to everyone. Please don't put any faith or trust in your medical doctor. You will just be disappointed time after time. Do what you can to help yourself & trust in God.
One more quick comment on a personal experience with doctors. In 1987, a GYN told me that 3 years of pelvic pain was all psychosomatic. I insisted on a colposcopy & he found I had stage IV cervical cancer! Had I listened to this "specialist", I'd have
been dead within the year......which would have been better than living like this! By the way, during those 3 years of hell, all
of my pap smears were normal...so, even medical tests cannot be trusted!! May God show His Mercy to all of you! Sincerely,L.O.

[Tanya N.]

Thanks so much for all the replies. No doctors were looking for mitochonria problems. At Columbia pres. they retested the  old frozen tissue from the first biopsy and said it was neg for mito. According to Dr. Cohen who has seen many adults with this, a fresh biopsy is needed.

I agree that with all my testing something may have been missed. About the endrocrine stuff.  I tried really hard with this too.  I have a flattened pitiutary and empty cellar, and enlarged thyroid, had a kidney tumor and have a kidney cyst on top of my kidney, cortisol irrg. I've had all the testing for this too and lab result were neg. except the cortisol being low with one test and neg with more testing. All test show alittle something at times and neg at others.

This morning I'm in soooo much pain and didn't sleep last night because of the whole body muscle pains.  I can't stand on my legs without servere pain.  I'm thinking about going to the ER but they never find anything, but this time I hurt so bad.  Pain meds make me worse.  I need an answer!!!!!!!!!!!!1

[SKO]

Sounds like an endocrine problem.  Since endocrine system is so complex it could be several different things.  However, Addisons disease's symptoms are Craving of salty foods, chronic fatigue, muscle weakenss, loss of appetite, low blood pressure, dizziness, skin changes, irregular menstrual periods.  Hypopituitarism includes joint pains, dizziness, loss of sexual drive irregular menses.  Cushings disease or even small pituitary tumors are also other options. But the salt craving made me think about Addisons which pertains to adrenal insufficiency.  Here are some good web sites for endocrine problems: pituitary.org; endocrineweb.com;  merek.com; vh.org; adrenal.com  Perhaps you need an endocrinologist.  Do the research and take the info to your PCP and ask him/her to refer you.  SKO

[chey101]

could it possibly be arthitis or menopause?

[CCF-Neuro-M.D.-CS]

The combination of muscle symptoms and stroke like episodes raises the question of mitochondrial disease or an inflammatory disorder. However with the extensive work-up you have had, one would have expected them to find an abnormality. Did your doctors consider a mitochondrial disorder? This could be missed on the muscle biopsy if it was not specified. A second opinion at a large academic center would be reasonable. To make the most of this appointment make sure you have all of your films, reports, and if possible the biopsy slides for the doctor to review. Then repeat tests can be ordered properly. Good luck.

[Tanya N.]

I forgot, I have shoulder weakness so bad, that it's hard to raise my arms. Thanks