It's really hard to tell sometimes what symptoms are caused by the M.E./CFS and what symptoms are caused by another condition.
Because they don't fully understand the pathology of M.E., it can be difficult to tell where one disease ends and another begins.
For example, fibromyalgia often overlaps with M.E. Some Dr.s believe they are the same, (some believe neither exist), but the research I've read indicates differences between them, even though there are a lot of overlapping symptoms.
M.E./CFS can also look like a lot of other conditions: viral infection, Lyme's disease, AIDS, multiple sclerosis, lupus and other autoimmune diseases, celiac disease, hypothyroidism, etc., etc.
Every time over the years I've seen a new GP they start trying to figure out what's "really" wrong with me. The usual go-tos are infection, autoimmune disease and thyroid disease.
Recent research on the success of the drug rituximab
http://www.medscape.com/viewarticle/752067
led Norwegian researchers to speculate that M.E./CFS is a type of B cell autoimmune disease.
This month I'm curious what other conditions/diseases people have been diagnosed with. I have a poll on the right. Of course I couldn't list every condition so I put some of the more common overlapping ones.
The only one I have been diagnosed with (and it's common in over 80% of M.E. patients) is Orthostatic Intolerance - in my case both POTS and NMH.
My most frustrating 6 M.E. symptoms during the last month have been:
1. fatigue and weakness
2. the shakes/tremors (I think caused by POTS)
3. feelings of having influenza such as painful breathing, and that icky, sick feeling (malaise)
4. dizzy spells when standing and red, sometimes purple hands from blood pooling
5. dry sore eyes
6. painful lymph nodes esp. axillary (armpits)
It is hard to have so many things go wrong in our bodies but with compromised immune systems it is not uncommon.
ReplyDeleteI was told by my LLMD that those who have ME/CFS and Lyme are also at a higher risk of getting cancer.
I read recently that a huge number of people with a CFS diagnosis have the underlying cause of Lyme Disease. It also mimics many other diseases. The test for it is not accurate so a clinical diagnosis is necessary. For me the wrong diagnosis had me getting worse and worse for 20+ years. I do wish there was more research on these diseases...
The difficult symptoms to deal with now are:
pain
neuropathy
weakness
fatigue
digestion problems
I too find the most humbling and yet frustrating part of the illness is never knowing which is the disease in the front or something new. It can be overwhelming. I try to listen to the words of my good doc, "it really doesn't matter what the disease is, you treat he symptoms of it first" Hang in there. Hugs. Tammy
ReplyDeleteI sometimes feel that some doctors see me as a puzzle to solve, instead of to treat. Of course they want to get to the bottom of it, but can't they look at their patient first instead of the condition?!
ReplyDelete