Mystery Illness - don't think it's CFS

[AcmeVanishingHairdo]

My partner is 29 and for the past 2 years her health has been declining.

Symptoms:

Overwhelming exhaustion - comes on quickly, many times a week, leaving her virtually unable to move & will fluctuate throughout the day.

Muscle fatigue & pain – occurs in legs & arms. When walking she can get slower and slower, her joints feeling like they're being tightened with a spanner until she can only hobble. She runs and weight trains, but her strength & endurance are reducing. Pain starts in minutes of beginning exercise. Sometimes it's concentrated in her hands and can be agony, waking her up in the night.

Unusual muscle sensations - like ants crawling under the skin or electricity, sometimes a clamping on the arms. Cramps have now started in the right-side hands and feet.

Uncontrollable muscles - fingers can move on their own and she gets rapid twitching in pectoral, leg and arm muscles.

Fuzzy head - difficulty concentrating and sometimes with comprehension. During an attack she can stumble over words and can't get enough breath to talk well.

Fluctuating temperature - shivering even when it's warm.

Background:

A period of mental illness in her early 20s lasted about 6 years. She was placed on various anti-depressants and anti-psychotics and gained weight. The medication caused suicidal thoughts and she took overdoses. She has suffered from eating disorders including bulimia and obsessive dieting. Since taking herself off medication about 3 years ago she lost 6 stones, aided by heavy exercise. She is now slim and eats healthily.

She is lately under a great deal of stress from work and being restricted by the illness.

CFS has been suggested, but specialists are doubtful as symptoms cycle too rapidly, are quickly alleviated by rest and may not always occur after exercise. MRI, EEG and many blood tests are all normal.

A longshot: her father was inoculated against polio shortly before she was conceived. Could there be any inherited effect?

[missbecky82]

Was your partner ever on Xanax or any other benzo? Have you ever considered that she could be going through withdrawal? Benzo withdrawal can supposedly last years. I am going through it right now and it has been months.

[dlhigh]

The tests the doctor suggested are a good start and hopefully will produce an answer.  I'm 36 and I've been experiencing the same symptoms plus many more currently without an answer, but getting close.  I still have to undergo a few more tests until the doc is sure of the cause, he's been ruling things out as we go.  There is one other consideration not mentioned by the doc, but unfortunately is one that most docs will discuss given your partners past mental history and that is anxiety.  I had a few docs mention this could be a cause, but I knew this was not the case for me and I finally found a neurologist who is helping me with a med called Gabapentin it's helping me tremendously with the extremity pain.  Anxiety is something to monitor, concerning when the attacks occur or are triggered, but don't let the docs sell you on this until all other tests have been completed first and a second opinion or more has been obtained.  Lyme disease has been mentioned to me more than once on this site for multiple symptoms such as these and indicated that most tests for it are inaccurate, this is something I'm checking into as well, so I would have her ask her doc about this also.
Wishing her great health soon!

[Kevin Pho, MD]

CFS is certainly possible, but it is normally a diagnosis of exclusion - other possibilities should be evaluated first.

These are a non-specific set of symptoms that can be caused by a variety of diseases.

Rheumatologic disease can lead to this picture.  This can include lupus, rheumatoid arthritis, or fibromyalgia.  Obtaining basic blood tests like an ANA level, blood count and rheumatoid factor can be considered.

Regarding the muscle fatigue, weakness, and sensitivity, you can consider a referral to a neurologist.  Systemic diseases like diabetes, thyroid dysfunction and B12 deficiency are possible.  I would also consider nerve conduction testing.  

I am not aware of the symptoms being associated with a polio vaccine.

These options should be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_