Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Since I feel such an affinity for all of you, I hope you don't mind if I indulge myself for a minute and talk about ME.
For the last 20+ years, I have been fighting a chronic illness with no name. Yes, I do have chronic degenerative disc disease for which the latest neurosurgeon said I needed laminectomies, discectomies and cervical fusion, 3 surgeries and probably a year of recovery at least. I decided against it because this other illness continues to plague me.
I was hit with overwhelming fatigue, depression, gastrointestinal problems, alveolitis, and a number of other smaller health problems when I was around 30. That was 20 years ago.
For the last 8 months, I have been laid up with chronic back pain and now the illness that shall not be named has raised its ugly head again. I ache all over, have pain in my elbow, finger and wrist joints and a burning feeling on my face. I also cannot eat without a great deal of pain in the stomach area that feels like I swallowed a softball. I am fatigued and weak and bedridden.
Yesterday I went to the doctor who is running yet again more ANA, RF and other anitbody tests that seem to be the source of all this crap. The last time these test were run (5 yrs. ago), they all came back negative; however, the pain in my stomach has plagued me for the last 5 years so that I am down 25 pounds from my normal weight.
This illness which will not be named contributed significantly to my divorce and to the loss of three jobs. The sheer exhaustion of working for a full week leaves me asleep on the couch after work until the next morning and weekends are more of the same. I am despondent as no one seems to be able to help me. I have been to neurologists, rheumatolgists, psychiatrists, internal medicine doctors, endocrinologists, and neurosurgeons. No one can put a name on it. It seems to be some sort of autoimmune disease, yet the applicable tests always come back negative.
What should I do now?
For the last 20+ years, I have been fighting a chronic illness with no name. Yes, I do have chronic degenerative disc disease for which the latest neurosurgeon said I needed laminectomies, discectomies and cervical fusion, 3 surgeries and probably a year of recovery at least. I decided against it because this other illness continues to plague me.
I was hit with overwhelming fatigue, depression, gastrointestinal problems, alveolitis, and a number of other smaller health problems when I was around 30. That was 20 years ago.
For the last 8 months, I have been laid up with chronic back pain and now the illness that shall not be named has raised its ugly head again. I ache all over, have pain in my elbow, finger and wrist joints and a burning feeling on my face. I also cannot eat without a great deal of pain in the stomach area that feels like I swallowed a softball. I am fatigued and weak and bedridden.
Yesterday I went to the doctor who is running yet again more ANA, RF and other anitbody tests that seem to be the source of all this crap. The last time these test were run (5 yrs. ago), they all came back negative; however, the pain in my stomach has plagued me for the last 5 years so that I am down 25 pounds from my normal weight.
This illness which will not be named contributed significantly to my divorce and to the loss of three jobs. The sheer exhaustion of working for a full week leaves me asleep on the couch after work until the next morning and weekends are more of the same. I am despondent as no one seems to be able to help me. I have been to neurologists, rheumatolgists, psychiatrists, internal medicine doctors, endocrinologists, and neurosurgeons. No one can put a name on it. It seems to be some sort of autoimmune disease, yet the applicable tests always come back negative.
What should I do now?
First of all, I am sorry for all that you have been through, and for what you are still going through right now. If I could heal you, I would. But anyway's, have you been tested for Lyme's? If you were tested before and came back negative, have them do it again. I know that there is a lab in California that runs the most specific test on Lyme's, but I don't know the name of it, maybe peaking on the Lyme support group and asking the folks over there about it, might be good for you.
Several viruses and bugs can live in the lining on your stomach and cause those gastro symptoms that you are talking about, so if I was you I will ask for a referral to a Gastro Doc and have those tests done. I know that you live in the boonies :-) but, are you close enough to a teaching/University hospital? Teaching hospitals love cases like yours, they like investigating things and maybe getting an appoinment with a teaching hospital in your area might be just what the Doctor ordered. I hope that these suggestions will help, and that you cans start feeling much better soon!
{{{Hugs}}}}
As far as your stomach/intestinal problems go... Have you seen a Gastroenterologist? If yes, have they done a Colonoscopy and an EGD? If not, I think that it should be something to look at.
Thanks for the post. I forgot to mention that I have been to a couple of gastroenterologists as well. The last one wanted to do a gastric emptying test which is about the only one I haven't done. They did do a colonoscopy and and EGD, finding just a little gastritis.
One of the neurologists did a CT scan as they were looking for cancer that would cause the neurological problems I was having. All they found was "degeneration of right hip of unknown origin." We brushed that aside at the time, but I'm now wondering if my joints are being eroded by something??? They also did two lumbar punctures which showed a high level of total protein and said I had some sort of inflammation of my central nervous system, but they couldn't figure out what it was.
Sorry I can't help more, but I'm sure the DS community will circle the wagons for you. :)