Hi folks...new here...may have CFS and Fibro.

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The_Animal
New Member


Date Joined Feb 2007
Total Posts : 11
   Posted 3/2/2007 11:16 AM (GMT -7)   
As I have said in the Fibro forum, I have been suffering with the following symptoms for the past 22 years: 
 
 widespread pain (migrates around my body)
 nausea (sometimes)
 dizziness (sometimes)
 itchy skin (sometimes)
 myofascial pain (joints, extremities, deep muscular ache)
 persistent muscle pain
 sore throat, bit of pain when swallowing.
 Chills and night sweats
 extremely sensitive (including arthritis pain) to weather changes
 morning fatigue/stiffness
 chronic headaches
 sensitivity to paint, strong cologne/perfume and other airborne chemical irritants
 muscle tics/facial tic
 overwhelming fatigue
 Fibro-fog (brain fog) (cognitive dysfunction/memory impairment – the "I can't think" syndrome) including memory or impaired concentration
 Sometimes my vision goes blurry on me when I'm feeling tired and dizzy, but I have 20/10 vision in one eye, 20/20 in the other, sensitivity to light, dry eyes)
 Post-exertional malaise lasting more than 24 hours (exhaustion and increased symptoms)
 Un-refreshing sleep (trying to figure that one out with oxymetrics and perhaps further testing based on the results)
After 22 years of gritting my teeth and just doing what I had to do, this last time I had to do a move in 24 hours, I ended up collapsed on my bed after the move for the next two weeks unable to do much of anything. 
 
My family physician thinks that it might be Chronic Fatigue Syndrome with Fibromyalgia, but we're going after more tests to make absolutely certain of the diagnosis. 
No Dx yet, working on it. 
 
Oxymetry Test done March 1, 2007, new Dr. appt: Tuesday next week.
----
Most people who live with a chronic illness will tell you that relapses are made much worse by the fact that they follow temporary remissions, when we think, with the eternal optimism of well-being, that we have escaped the clutches of pain for good. ~ "Well, I guess I'll stop thinking then!" 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/3/2007 6:34 AM (GMT -7)   
Welcome Animal. I'm so sorry you have been having these symptoms for so long without any diagnosis. Being in diagnosis limbo really stinks because its hard to explain to other people what is wrong when you don't have a name for it.

Is the doctor you are seeing Tuesday a specialist? I really hope this is a good doctor who will take the time to really try to help you figure out what is causing your symptoms and give you some hope for relief in the future.

Keep us updated on what you find out and let us know if you have any questions. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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The_Animal
New Member


Date Joined Feb 2007
Total Posts : 11
   Posted 3/6/2007 3:29 PM (GMT -7)   
My doctor is my family physician who is really concerned about these symptoms. For the longest time (from the time I was 15 to the time I was 28) I just believed that I was just being lazy because that was drummed into me by my parents from the time I recovered from measles. I just gritted my teeth and "lived with it", but it's getting to the point where I "can't live with it" any longer and "I need to know" one way or the other. The joint-pain is tolerable, but what isn't tolerable is the chronic feeling of having a "25 pound sandbag" riding on my neck and shoulders and feeling unable to shake that feeling off at all, no matter how much sleep I get.

Even now, as I'm typing this, I have to take a certain number of breaks to re-collect my thoughts and get them down in any form of coherent order which is starting to take a toll on my studies (I went back to school at the age of 36 and decided to take web-design).
No Dx yet, working on it. 
 
Oxymetry Test done March 1, 2007, new Dr. appt: Tuesday next week.
----
Most people who live with a chronic illness will tell you that relapses are made much worse by the fact that they follow temporary remissions, when we think, with the eternal optimism of well-being, that we have escaped the clutches of pain for good. ~ "Well, I guess I'll stop thinking then!" 


abc123
Regular Member


Date Joined Feb 2007
Total Posts : 172
   Posted 3/8/2007 6:24 PM (GMT -7)   
My last advice was to rub some dirt on it. Hope it helps you more than me.

The edit:

Looks like I was feeling a little surly last night. Maybe I can take a more helpful approach this morning.

See a pain doc if you can - mine is really working with me on some good solutions. Today was the first day in I don't know how long that I didn't wake up reaching for the Lortab. I haven't had one yet, want to, but my back is bearable.

Have you done any PT? Some people really find it helps them.

Gentle exercise, even though you don't feel like it. Especially in the summer, I like to swim. I'm only allowed to swim on my back because it's gentle. I does a great job of loosening up my muscles and totally supporting my body.

If none of that interests you, you can always go back to the suggestion I gave you last night.

Stephanie
Dx: FMS/CMP/DDD - 2 ACFs with more to follow, scoliosis, unlevel hips
Rx: Cymbalta, Soma, Zanaflex, EC Naprosyn, Ambien CR, Lortab and Percocet.

Post Edited (abc123) : 3/9/2007 8:20:47 AM (GMT-7)


FibromiteMN
Regular Member


Date Joined Feb 2007
Total Posts : 26
   Posted 3/25/2007 4:36 PM (GMT -7)   
I have been to a pain clinic, rhemetologist, physical therapy, occupational therapy, and family physician. None of them worked except for my family physician. I hope your family physician can help you. I usually bring in articles and possible medications that I would like to be on and she reads them and then calls me later or skims through them when I am in the doctors office. I think a lot of doc's don't know much about fibro and that is why I bring in articles to my doc. I have to educate her!!

Hope you feel better soon.
dx'd with fibro and cfs
Soma, Malic Acid with Magnesium, Wellbutrin XL, Clonazapam, Vicodin, Neurontin

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