I just want people to understand !

[clarelsmith]

New to this Web site thing , don't do self deprivation , but need some support. My partner is brill but I hurt and all meds cause problems , I'm 46 and fighting bit don't want steroids ( just lost 7 stone ) feel useless

[magSLE]

Hi clarelsmith, seems you're pretty frustrated with your current health issues. Has your body got inflammation? When I was not functioning due to severe Arthritis pain, I didn't want to take steroids for fear of long term effects. I took NSAID (Non- Steroidal Anti-Inflammatory Drugs) - Naproxen instead & ended up with Gastroenteritis because my body wasn't digesting the meds properly , I take 5mg a day of Predisnole (steroid) which has eased the pain (to practically non-existent), this low dose hasn't made me put on weight. Can you be put on a low dose to see how it works for you? I pray you recover soon. Stay positive! You are not useless, sadly we are not control of our health conditions but we are control of our minds, diet and lifestyles.

[trueman]

Sorry to hear you are feeling run down. 7 stone? That's a lot! Did you want to lose the weight and tried to? Meds do cause problems but more often than not these problems are at the beginning and then settle down.. Hope you are ok today.

[clarelsmith in reply to trueman]

Thank you, 5 stone was intended but the other has been since diagnosis.

[23_molly]

clarelsmith, I'm sorry you are in distress. If there's one universal cry we share, it's "please understand." After 30 years of this AI diseases/syndromes gig, I've observed that level of understanding is, like other human distributions, a bell curve. Some, if you are lucky, are "brill," (fortunately your partner, who is essential; others will never get it--forget them; some of the remaining 68% will get it eventually. It is frustrating beyond belief. You have my empathy. Simple explanations work best. Laying TMI on ppl is casting pearls before swine. Concentrate on those with whom you interact on a regular basis. But please remember, 1.) It takes time, and 2.) Be most kind to yourself. With best wishes, molly

[LupusAdmin3 LUPUS UK]

Hi clarelsmith,

Welcome to the LUPUS UK community here on HealthUnlocked, i hope that you find the forum helpful.

We have over 20 regional groups across the UK who meet up on a regular basis, as well as hundreds of contacts who live with lupus themselves and are available to talk to. If you would like to be put in touch with somebody or would like to know here your nearest support group is, just send me a private message or an email and i will forward you their details. [e-mail]

If there is anything else i can do for you please do let me know.

Best wishes,

Hayley

LUPUS UK

[Hardy1]

We understand. X

[LupusLady74]

H clarelsmith, we do understand Hun. Give the meds a chance to kick in hopefully the side effects will start to wear off, if they don't go back to GP and Rheumatologist and they can try others. Are you on NSAID's? Short term steroids help and side effects are minimalised (so I believe) long term they definitely have side effects. I've been on steroids since 2001 when I was finally diagnosed.