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Old 10-28-2009, 11:01 AM   #1
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Not sure of diagnosis

About 2 1/2 yrs ago I got pneumonia. Since then, I have had fatigue, confusion, joint pain, headaches, dizziness, easy bruising and hundreds of lumps that have attached to my muscle on arms and legs.I am often hotter than the rest of my family and do sometimes run a low grade fever. I sleep about 12-14 hours per day. Occasionally I have issues during bowel movements wherein I get really hot, sweat and feel like I am going to pass out. . I have been to a neurologist, sleep doctor, psychologist and rheumotologist. Basic blood work did not show any issues. MRI with and without contrast was negative. Sleep study showed less than 5% rem. EEG and EKG are negative. Dr stated it is in my head. I am now on Prozac and Provigil but nothing has changed. I am not sure who to see about this as I have been to doctors and have gotten no relief. I just want to get better and am not sure what to do.

 
Old 10-28-2009, 01:44 PM   #2
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Re: Not sure of diagnosis

I know it is hard but keep going to Dr. after Dr. until you get the correct diagnosis. These doctors just blame it on depression because it is the easy way out.

I went through several sleep studies and eventually was diagnosed with Narcolepsy. I was up to 1200mg of Provigil and it made me like a zombie. Now I take Dexadrine. Before the Narcolepsy diagnosis they diagnosed me with Idopathic Hypersomnia (I think it is spelled that way) It just meant I was tired all the time with no medical diagnoWasis. Something like that. So there are alot of reasons you could be tired and sleeping all day.

Did you get blood work done? What about Anemia, Rhem. Arthritis? Did you get tested for all that. Your symptons sound like it can be alot of things.

Hope you feel better and get the answers you need.

 
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Old 10-29-2009, 04:04 AM   #3
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Re: Not sure of diagnosis

Just a couple of thoughts..

I have been studying up on myofascial triggerpoints. They often go hand in hand with fibromyalgia and chronic fatigue syndrome. The symptoms you are describing do fit in some ways. Not everybody gets all the 'typical' symptoms of something. I'd guess that what you have going on is some combination of these. I'm assuming that you are young enough that it's unlikely that being hot and sweating are unlikely to be hormonally related? I get that too, but in my case it almost certainly is peri-menopause. You may want to look for a Rheumatologist, internist, or other Dr. in your area that typically treats fibromyalgia and get evaluated for that. Your primary Dr. may be able to direct you to someone, or you may have to do the searching yourself. One option would be to look for a Fibro support group in your area and contact them to see if they have a list of Dr's who treat Fibro. There are also some lists on the web. If you do a search on Fibro and myofascial, you will likely find some very good information. There are also some good books that you might be able to get from your local library. One of the keys to managing any chronic pain issue, is you need to know what is going on with your body as much as possible. People with myofascial and Fibro often have other conditions that aggravate things and cause other symptoms. And really from reading posts on this board for a while, it's pretty common for people who have chronic pain in general to have multiple conditions.

Best of luck,

Tigg.

 
Old 10-29-2009, 09:25 AM   #4
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Re: Not sure of diagnosis

has any of these docs ever really looked into just what these 'lumps' actually consist of? are these actually on the outside of the muscles and kind of 'visable', or are they actually INSIDE of the muscle? what tig mentioned about trigger points is a possible, but depending upon how these actually 'are'(how they are presenting?) would really dictate what needs to be done to really determine just what they actually consist of, like a possible bunch of 'cystlike' globs or something, or plain old TPs. just what do they feel like to you if you can actually even palpate on of them with your fingers? very hard or soft oo gel like/liquid in consistancy? i personally have been having an ongoing battle with some really insane levels of TPs myself for well over a decade now.

just the mere fact that these are on the muscle of the arms and legs really would kind of rule out the basic TPs, since those will usually form more on the upper torso like all over the upper and lower back muscle, but not where you are describing 'hundreds' of these lumps? they really need to just aspirate one of them or biopsy one to just see what they are and what their make up is. that finding after this is done would really tell much more just what the 'base' of the formations could be stemming from. 'something' is very obviously stimulating these to grow, and THAT is what needs to really be found out.

if no one has actually looked inside one of those little buggers they really really need to at this point. i do hope they can find out just what is causing all of these and your other symptoms too. please keep us posted as to what you find out. marcia
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