In March, I got suddenly sick. Well, I had not been 100% before that, but I was functional. I was in the ER 5 times that month, had two thoracentesis, got a new PCP on 3/24 who diagnosed lupus, started on 40 mg/day prednisone which helped a little bit with the exhaustion. My pulmonologist who was already treating me for sleep apnea got me in with a rheumatologist in his office on 4/2. X-rays showed rheumatoid arthritis with bone erosion. He upped the prednisone to 60 mg and for a day and a half I felt perfect. Then the fatigue returned, and I had all sorts of SEs. It took me until the end of August to get off of it. I was diagnosed with fibromyalgia 5 or 6 years ago, but it did not disable me.
My question is, what is what? I have so many symptoms, and they change over time. It has been 7 months, and I am confused. I went through some emotional stuff, as you can imagine. I applied for disability, which is a real slap in the face to someone who is used to being very capable, very industrious. My rheumatologist does not seem very good, and I have an appointment with another one in November. I don't think I am good at analyzing or describing symptoms. Plus, the constantly changing nature of them is confusing. I feel like I am always a step behind myself.
The constant symptom I have is fatigue. Except when I have insomnia, I sleep 11-12 hours a night and then also several hours during the day.
Sometimes my joints hurt worse, but the last several weeks I have had a lot of muscle pain, mostly in my thighs, arms, legs, shoulders. They feel bruised. The truth is, I don't think either pain would be unbearable; it is the fatigue. Even when I am up and moving around, I am so exhausted I cannot think or accomplish much. I have had to develop a ton of tools to remember necessary things, and even then they get past me. I cannot stay even basically organized, so everything is always lost.
Has anyone ever experienced these things, and what was the cause:
My hands and feet feel "dipped in pain." They burn, bad.
After a certain number of steps in a day (not many, maybe 300), my feet feel like hot knives are stabbing area above toes. I literally cannot walk.
Itching, not severe, just fairly frequent, not dry skin-hands, joints, face.
Areas of numbness, for example, it might be a 2"x3" oval
Very bad pins and needles, like hundreds of ant bites, with no reason. Also odd shooting/stabbing pains.
Eyes go blurry for a few minutes then are ok. The white of my left eye gets red for several days at a time, reason unknown.
I asked my doctor today for a handicapped sticker, because when I do go to the store (rarely), by the time I get inside I have used up all my walking for the day. He is giving me a 6 month pass. It would be wonderful if this went away in 6 months, but I cannot imagine how it is possible. Even if they find medications to help, is there any hope for the fatigue? I was on methotrexate and had a ton of side effects, but it did not help the symptoms. Well, I don't think so, because my symptoms change, so who knows what is what. It didn't help the fatigue, for sure.
Well, that is all that comes to mind. I am just trying to grasp the extent of what is going on, what is related to what, what to expect over time, why my doctor thinks it will all go away, how that could happen, how I can better describe things to doctors when things change all the time.
Any thoughts or comments are welcome, on the board or by personal reply.
it sounds like fibro but what you do is just have them check for everything else but fibro....since u cant check for fibro....check the thyroid make sure your vitamin levels are fine....etc...do all the tests for every possible thing...theres only a few issues it could be in this case...if its not any of those you have fibro...worst thing happens you get a few doc bills...but if you dont have your health, y have money?
You sound just like me, When i go see my doctor i no longer know what to say! I have fibro & RA.Medications sometimes help!but fatigue never really goes away.I pray alot and just take it day by day.I know it seems horrible but you know there is people out there with cancer.And alot of them children.Thats what helps me to get by!!Please never forget that you are not alone in this!
have you been tested for multiple sclerosis. Need an
MRI and possibly a spinal tap for diagnosis. Your symptoms sound like the same as my Mom's and a couple of friends I know with MS. Good luck to you.