Why doesn’t anyone listen : Hi I’ve been taking... - LUPUS UK

LUPUS UK

31,744 members28,102 posts

Why doesn’t anyone listen

Unpacked profile image
6 Replies

Hi I’ve been taking prednisone and hydroxachlorine for 3 years I’m in pain all the time with swollen hands feet that are up and down , the pain is in my neck back and all down one leg surely after 3 years this should not be the case I recently had 3 weeks of being completely dizzy I could not walk to the shop , I was given a nasal steroid while this was happening my pain completely went then once dizziness went it came back different now it’s all down one leg and in my food so bad I’m limping

Why doesn’t anyone listen any advice very grateful .

Written by
Unpacked profile image
Unpacked
To view profiles and participate in discussions please or .
Read more about...
6 Replies

Hi Unpacked just wanted to say so sorry your feeling so rotten,I’m new to all this myself so can’t offer any constructive advice other than maybe contact your gp or consultant to tell them how bad your symptoms are and ask for your meds to be tweaked if possible.Best of luck and take care x

Krock1 profile image
Krock1

I have been on hydroxychloroquine for about 5 years. I have mixed connective tissue disease. This disease seems to manifest itself in muscular, tendon, and ligament issues.

I also have issues with my lower back causes by stenosis of the spine and I believe is a separate issue from the connective tissue disease. I dealt with the stenosis for about 15 years but finally had a fusion done 4 years ago and have had a great deal of relief from the leg issues. During the 15 years prior to surgery I used anti inflammatory drugs, acupuncture, physical therapy, and a couple ESI sequences. These worked well and I figured out ways to stay active without stressing my back. You may want to visit an orthopedic physician to address the leg issue.

Unpacked profile image
Unpacked in reply to Krock1

Thank you I’m glad you have got some relief and I will go and see one and see if they can help me x

Fighting profile image
Fighting

I did well for a number of years but now that I'm 70 I seem to have multiple issues and a sister who insists I wear a medical alert button. She feels she and her Husband have all the answers. She is on her Iphone, he is on his I phone and even visiting them made me tired.

Fighting profile image
Fighting

She is 18 months younger than I am. She married the 25th of April 1987. I married the 24th of April 1976 and have been divorced more years than I was married. I don't want to antagonize her or her husband as they do provide me with extra groceries and meals. Most of my friends are older than I am or deceased. It happened because I kept having health issues of a person much older.

Fighting profile image
Fighting

I try to.

You may also like...

Anyone can't tolerate HCQ and why?

and worse, not helpful. And thirdly the pain in my lower back and flanks got slowly worse, normally...

Doctors don't listen, so frustrated

few years but over the last week it's come back and the joint pain and muscular pain in having all...

Why did I bother!? Anyone from Stoke on Trent here?

how you do find your doctors are with you? I went to my doctor today because I was given quinoric

Did anyone listen to the BBC radio program about Lupus?

Dizziness - anyone found out why?

Most of us seem to suffer with dizziness once in a while. If you've raised that with your doctors,...