- Joined
- Mar 12, 2013
- Messages
- 9
Hi. I am curious if anyone has had a symptom route similar to mine.
Nearly a year ago I had become increasingly fatigued and with that increased pain in my feet, achilles and calves. So much pain that it became to difficult to climb stairs, hills, flex my feet and eventually walk. A few weeks after these muscular pains began I got what a appeared to be a nodular rash all over the joints of my hands and elbows. I was diagnosed by 'sight' to have Dermatomyositis as a result of also having an elevated CK level and nodular rash. I was placed on a high dosage of prednisone which got rid of the rash and the muscular pain, however only briefly. After being on prednisone for a month, I was told it's a funny disease we'll see what happens and to be in touch. Well, it's a funny disease that is in fact quite serious. And wasn't informed of the serious side effects of prednisone and lost my mind for over a month. Ah, venting sorry.
After this initial diagnosis, i was terrified of what I had and started seeing a rheumatologist, neurologist and a dermatologist. All of whom told me that a month of Pred wouldn't have gotten ride of dermatomyositis in a month. I was battered with blood work for months and tests of many sorts all of which have come back normal. I don't have neuropathy, or a myopathy, or am not testing positive for RA, Lupus, or lymes. Throughout the past year I continue to feel poorly. Fatigued, malaise, sore, deep muscle pains and joint pain, especially in the hands and elbows. It doesnt help that my job requires me to stand all day and work with my hands (manual labor - picture frame making)
In addition,during the past year or so, I had become increasingly gassy and bloated. After 2 months of increasing abdominal pain and inconsistent bowel movements (diarrhea, mucos, blood, constipation ect) I dropped gluten from my diet and found relief from the gas and boating. Yet the pain and bm persists. It hurts to eat. My pain is in the L quadrant near my rib cage, yet moves up and down my L side. I also have moments when my chest cavity on the L side becomes so TIGHT and PAINFUL that i think that I am dying.
I recently saw a new Rheumatologist who suggested that I see a GI person. He believed that my symptoms could perhaps be related to all of my gut issues. I immediately contacted a GI doc and so luckily got a colonoscopy and endiscope very quickly! It wasn't so bad. The pathology report read
"lleum: Small intestinal mucosa showing focal nodular lymphoid
hyperplasia with focal superficial erosion and mild non-specific
resolving-type inflammation. Negative for significant active ileitis,
granulomata, chronicity, or dysplasia."
Now my GI wants me to get a pill cam that I am all for as long as my insurance is on boat too!
Ultimately, I am fatigued all the time. I feel as if I have run marathons in my sleep, if I sleep much at all since I am in pain or have to go to the bathroom! I have weight loss, little appetite abdominal pain and discomfort along with joint issues. It has caused to me miss a bit of work this past year unfortunately.
Any insight, or this sounds familiar, or advice would be nice to hear.
I apologize if this is haphazard. it's been a long year
Nearly a year ago I had become increasingly fatigued and with that increased pain in my feet, achilles and calves. So much pain that it became to difficult to climb stairs, hills, flex my feet and eventually walk. A few weeks after these muscular pains began I got what a appeared to be a nodular rash all over the joints of my hands and elbows. I was diagnosed by 'sight' to have Dermatomyositis as a result of also having an elevated CK level and nodular rash. I was placed on a high dosage of prednisone which got rid of the rash and the muscular pain, however only briefly. After being on prednisone for a month, I was told it's a funny disease we'll see what happens and to be in touch. Well, it's a funny disease that is in fact quite serious. And wasn't informed of the serious side effects of prednisone and lost my mind for over a month. Ah, venting sorry.
After this initial diagnosis, i was terrified of what I had and started seeing a rheumatologist, neurologist and a dermatologist. All of whom told me that a month of Pred wouldn't have gotten ride of dermatomyositis in a month. I was battered with blood work for months and tests of many sorts all of which have come back normal. I don't have neuropathy, or a myopathy, or am not testing positive for RA, Lupus, or lymes. Throughout the past year I continue to feel poorly. Fatigued, malaise, sore, deep muscle pains and joint pain, especially in the hands and elbows. It doesnt help that my job requires me to stand all day and work with my hands (manual labor - picture frame making)
In addition,during the past year or so, I had become increasingly gassy and bloated. After 2 months of increasing abdominal pain and inconsistent bowel movements (diarrhea, mucos, blood, constipation ect) I dropped gluten from my diet and found relief from the gas and boating. Yet the pain and bm persists. It hurts to eat. My pain is in the L quadrant near my rib cage, yet moves up and down my L side. I also have moments when my chest cavity on the L side becomes so TIGHT and PAINFUL that i think that I am dying.
I recently saw a new Rheumatologist who suggested that I see a GI person. He believed that my symptoms could perhaps be related to all of my gut issues. I immediately contacted a GI doc and so luckily got a colonoscopy and endiscope very quickly! It wasn't so bad. The pathology report read
"lleum: Small intestinal mucosa showing focal nodular lymphoid
hyperplasia with focal superficial erosion and mild non-specific
resolving-type inflammation. Negative for significant active ileitis,
granulomata, chronicity, or dysplasia."
Now my GI wants me to get a pill cam that I am all for as long as my insurance is on boat too!
Ultimately, I am fatigued all the time. I feel as if I have run marathons in my sleep, if I sleep much at all since I am in pain or have to go to the bathroom! I have weight loss, little appetite abdominal pain and discomfort along with joint issues. It has caused to me miss a bit of work this past year unfortunately.
Any insight, or this sounds familiar, or advice would be nice to hear.
I apologize if this is haphazard. it's been a long year
Last edited:
