Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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What do I do next?

deleted_user
deleted_user
There's something really, really wrong with me. I have different doctors saying different things, and I'm trying to develop a diagnostic strategy, but I don't know where to even start looking.

I've been having recurrent kidney infections with joint pain, low grade fevers, last year I was constantly feeling ill (like it was Norwalk virus or a bad cold), this year I'm just weak and in a lot of pain.

The pain isn't symmetrical. I don't have swelling in my joints (that I can tell, but I did have a swollen ankle... peripheral edema - may have been related to kidneys, but the joint hurt really bad).

I have a lot of neuropathy all over my torso, back (upper and lower).

I have nasal sores. They hurt to touch, but they don't hurt if they're not touched.

I'm just gutted, exhausted... I don't know if I should be looking at Fibromyalgia as one doctor suggested. Rheumatoid Arthritis as another suggested. Is it the Lupus my cousin has? Is it the Multiple Sclerosis my mother has?

It is a vague rheumatological thing that won't likely have a single identifiable disease or cause?

The doctor who thinks this last bit is the one who was quickest to treat me and seems genuinely concerned about my pain. For that, I'm grateful.

Any ideas?
deleted_user
deleted_user
First thing is watch those sores, please! Could very well be MRSA! I get infections all the time. the last one put me in the hospital for 7 days.

I have my docs all confused. 2yrs ago I was down to 120+ pounds. Now I'm back to 170. I dont look like a person with sle, but on the inside is a different story. Joint pain, inflamation, fatigue. You name the symptom, I got it.
I know 2nd opinions are great. I've had 40 docs in the last 2 years. I live in a small town with a small town doc and he is great. He listens, and if he doesn't understand, he researches. And my Rheumatologist is one of the best in the Pacific Northwest. I have two people that work together to figure out the problems. That is what you need to find.
deleted_user
deleted_user
A rheumatologist works with all the deseases you talked about. I would start there since they are specialest you would get a better diagnossis. Take care
deleted_user
deleted_user
It is possible to have more than one rheumatological condition. I happen to have fibro, hashimoto's, and lupus. my rheumo told me it is very common when you have one auto-immune to have several. I just started on lyrica for the pain. Hopefully if this helps I can cut down on the vicaprophen. Right now it is the only thing that is keeping me being able to work. I am so sorry for all your pain and discomfort. Hang in there more and more research is being done everyday on auto immune diseases!!!! One day hopefully we wil all be cured
deleted_user
deleted_user
Hello, there is a post in the discussion forum entitled "what are the mains symptoms of lupus..." written by user name "keeks2419". I gave a list of different symptoms and tests that are used to determine a diagnosis of lupus. I will bump the topic to the top of the discussion forum so you could easily find it. Hopefully this will help you out. If you have any questions, please feel free to reach out.
deleted_user
deleted_user
There is now a neuropathy group

There is is a link/ topic.. called - What IS Neuropathy you'll also find other helpful resources for pain management.

http://dailystrength.org/groups/neuropathy

:)
deleted_user
deleted_user
Have any of your physicians mentioned Mixed Connective Tissue Disease? Google it, it seems to make a lot of sense with your symptoms.
I have Undifferentiated Connective Tissue Disease, which is similar. I have symptoms of several, but no one symptom to definatley point to one or the other. It has been a very difficult last few years for me in the diagnosis department. For several years I was told it was all depression, anxiety, or both. Finally last year a physician cared enough to look deeper and really listen. It took so many years though of swinging back and forth between KNOWING something was really wrong, and feeling INSANE because the physicains told me I was fine.
A really good rheumatologist who is familiar with the different auto immune disorders and familiar with lupus is a necessity. Not all rheumy's have the same experience.
deleted_user
deleted_user
I started with the all over feeling of just not feeling well and being exhausted. My Gen doc said it was just viral and I said NO! somethin isn't right. I've also had migraines for ever. I finally went to a GOOD Neuro who listened and wanted to get to the bottom of it. BUT... I also went to the EYE DR to get a check up and a lot of that info came in very handy in combination with all the info my Neuro sent my RHUEMY when she finally decided it was time. You just have to keep plugging along. But a GOOD RHEUMY is the place you need to be. I have built a fantastic team of Docs including my same old Gen Doc who is wonderful, just didn't have the info or experience with this stuff. He now has learned something as well.
Good Luck and Hugs.
Jill
deleted_user
deleted_user
YOUR GP DOCTOR WOULD BE THE FIRST PLACE TO BEGIN, HE/SHE CAN AND WILL REFER YOU AS NECESSARY TO OTHER SPECIALISTS. GOD BLESS YOU, BEST OF WISHES
deleted_user
deleted_user
u asked what to do next? there are things that you can control and things that are in your doctor's hands. Rheumatologists from university hospitals are better then those in private practice.u can choose to change doctors or choose to learn more about your symptoms as well as knowing your lab results and how to read them.
Meanwhile what your dr. can't tell you is that you can control your flare-ups with seeing a nutritionists, and your life style. Diet has been the main factor for me in getting my lupus in control as well as supplements.
deleted_user
deleted_user
I'm so sorry for your pain. Here, we can all relate because we've been in all sorts of pain. First of all, are you being treated by your PDO doctor or a rheumatologist? You really need a good rheumy to check you out and run some tests. Yes, it is very possible to have symptoms of one or more diseases and all to actually have one or more diseases which need to be treated. The main thing is to find out what's going on. I get sores in my nose too. In the evening before I go to bed, I coat a Q-tip with an antibiotic cream and coat the inside with my nose with it. It seems to help. Then again, listen to Shelby, because I don't know if there is more to this.

Please know I am thinking of you and hope you find some solutions soon. Keep me informed, okay?
peace and love ... Kyle Anne
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