Quote:
Originally Posted by Megan
I posted the following (below in italics) on the Peripheral Neuropathy (PN) board a week or so ago but am wondering if it may be more appropriate here. Thanks Fanfaire for your responses on the PN board!
Just to fill you in - I have not been diagnosed with a cause yet for the PN despite lots of tests. I have incredible muscle fatigue and stiffness and have aches and pains all over, as well as, from time to time excruciating joint pain which may be transient and last from -a couple of minutes to a couple of days. Once the pain disappears after one of these episodes, it's as though it was never there at all. There is no swelling or redness of the involved joint/s.
Most nights now I even dream I am so exhausted that I can't wake up and my limbs literally ache and feel so heavy while I'm sleeping and I make dreams around that also. Is this experience common to any of you or am I an idiot?
"It is now six months since I started to get daily around-the-clock symptoms of PN and it is nearly five months since I developed extreme whole-of-body fatigue.
The fatigue is quite debilitating and I am beginning to wonder whether I have ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Fibromyalgia or CFIDS as some of you may know it as. So many of my symptoms are parallel, except for the Peripheral Neuropathy.
Does anyone know whether PN can ever be a component of ME/CFS/Fibromyalgia?
Also does anyone have any input on longterm sequelae to a persistent Mycoplasma infection?"
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Hi Megan,
I totally don't know what I'm doing here as I have just joined and likely don't know how to post right since I have not even yet read the instructions. So, I did want to respond to your query. Of course I cannot diagnose you, only give some feedback from my perspective as a patient of both FM and ME/CFS. I do not, however, have any peripheral neuropathy!
It seems to me that most everybody with these two disorders complains of memory and cognition problems along with the fatigue and the pain. So, just on that basis alone, does not bring to mind these two disorders.
You also mentioned severe joint pain and it being transient. Altho joint pain is listed as a symptom of I believe both disorders, I have never heard of folks complaining of severe joint pain, and I had been on a chatline with around 1500 members for approximately 5 years, and so I've heard a lot of people's stories.
At any rate, sounds like your symptoms would be quite a challenge to any doctor . . . and this is very unfortunate. You get so so soooo many docs who simply want to dismiss everything and hope it goes away so as to get on to their next patient and get thru the day. Yes, it is very very unfortunate that it has to be that way. You just need to stay one step ahead of them and come armed to your appt. with as much information as possible, learn to talk to them on their level, don't say, "I read it on the Internet" unless you can cite the precise medical journal and have a copy of the blurb as well. So, you are headed in the right direction insofar as informing yourself.
One other suggestion: of course look on the 'net for any peripheral neuropathy groups and also, quite possibly this could be some sort of unusual autoimmune disorder. So, I would read up on those things and also make an appt. with a rheumatologist. After all, if your joints are affected, this is what their specialty is for . . . Good Luck.
Joey