Can anyone help. For a year I have had pain in my elbow top and bottom. My gp said it was tennis and golfers elbow.

[Gillyg]

I have so far had 3 steroid injections. Helps for a while but back again with vengeance. I don't want to have anymore injections. I have tried Physio. One of my big problems with SLE is joint do you think it is made worse because of this. The only repetitive thing I can say I do is pick up my grandchildren and can't see how I can stop that. The pain is very bad.

[Hidden]

Hi Gillyg, I have the same problem, had it for 5 years, had physio, 3 steroid inject, acupuncture.....the steroids helped for a while but if I pick up anything heavy the pain comes back again. Next step surgery but I don't want that. I also found a great oesteopath who really helps with my muscle and joint pains but unfortunately I can't afford to carry on seeing her. I now use a tens machine and ibuprofen gel 10% from gp, a support bandage and rest it by trying to do more with my left, though that elbow hurts a little too. Sorry I can't be more helpful. All the best

[EOLHPC]

Hello gillyg

I have somewhat similar problems, diagnosis & treatment, but this is in one metatarsal joint of my right forefoot, so a few details- hope you'll bear with me:

After years of seeking diagnosis, we now finally know: this is mainly due to typical SLE tendon tightening causing mortons neuroma, bursitis/synovitis/capsulitis, complicated by hypermobility ligmentous laxity (likely Ehlers Danlos) + simultaneous raynauds & erythromelalgia) which has rendered me effectively lame due to daily flaring chronic pain inside my forefoot nearest the bottom of my foot....especially this flares due to even minimal weight bearing. My drs & my osteopath now describe this complicated mixture of persistent & recurring issues as: Complex Regional Pain Syndrome (CRPS)....but it's taken a lot of effort to get diagnosis

All this has developed despite a lifetime of careful conservative mangement of my feet. I am 60, and have worn sensible shoes with bespoke orthotics all my life, and always taken good daily care of my feet. but I also have infant onset lupus.

this forefoot pain started getting really bad in 2008, so it has taken all these years to be fully diagnosed. Last year, after MRI, a top NHS ortho surgeon felt surgery inappropriate due to my autoimmune conditions and told me to stay off my feet, offering no help at all. But I had done a lot of research and knew steroid injections were probably the only appropriate option. In desperation I turned to my long time hero pain consultant privately for steroid injections. My NHS rheumatology clinic approved 3 injections per year. I had 2 injections last year. Each injection did reduce my pain for approx 30 days only. And a few months after the 2nd injection, something began to 'unravel' in the injection site: my drs think a nerve was severed due to the injections, and there has been some sort of bleed or haematoma & muscle wastage. Seemingly as a result, the focal point of this chronic forefoot pain has significantly shifted: migrating more towards the top of my forefoot. This makes weight bearing slightly less painful, but I am now experiencing ankle drop. Next week I see my pain consultant for his thoughts on all this.

So, I very much feel for you. My suggestion is: if you haven't already, google CRPS and think about whether your problem fits with this. My feeling is that as you have experienced these symptoms persistently for more than 3 months, despite standard appropriate treatments, your lupus status means you may well be considered a CRPS patient. If so, you deserve to be thoroughly examined and diagnosed by a consultant experienced in CRPS cases, eg a pain consultant or ortho surgeon.

Sorry for such a long winded reply, but coping with these sort of things can be so complicated and debilitating...and every case is so individual, that it's possibly best to avoid generalising. I've learned this the hard way, after years of drs &so called experienced people telling me things like: it's only the foot version of tennis elbow. Meanwhile, my pain problem was becoming more and more entrenched, chronic & untreatable.

I vvvv much feel for you. Good luck...

[Hidden in reply to EOLHPC]

Hello barn clown, was thinking of replying in a similar vein, then read yours. Cannot beleive I have the same. It all started with my r. Ankle and MRI showed inflammation of the tendons, inside and out of my ankle. Rheumy said results were normal !!! Had jabs all round my foot to no avail. Then bottom instep of foot started to bulge out. Physio kept strapping it up tight with sticky bandages. Went to hydrotherapy and orthotics, where they made me an ankle brace along with shoe inserts. Pain went to top of foot, like you, had jab and now cannot flex my foot side to side. Final outcome is, the hydro was so good for everything else I now go regularly. Ankle brace is brilliant, except i can't get my footwear over it, and finally, it has all disappeared, and gone to my elbow !!! How weird is that. My foot issue was about 3 years ago, and blighted me for 2 years. Yes absolute agony, will be googling.

[EOLHPC in reply to Hidden]

Gosh! Where do you go for the hydro? Physiotherapy? Many thanks for all this detail: very helpful to me! Take care

[Hidden in reply to EOLHPC]

I had the referral for hydro through the physio. As I couldn't do weight bearing exercise. This is on NHS. As I said, it didn't help foot at all, but was so good for general lupus joint stiffness, that they putme on a rolling course of hydro. This means I go several times a year, for 6 weekly sessions at a time. My ankle is damaged now and still can't flex it properly, and it does nag me from time to time, but that awful pain has gone. Not going to bother with elbow. Just hope it goes in time too. My NHS hospital is Colchester General.

[EOLHPC in reply to Hidden]

Thanks! Hey, I'm in Suffolk - rheumatologist at addenbrookes & other speciality clinics west Suffolk hosp...

[Hidden in reply to EOLHPC]

Hi barnclown, neighbour, !!! Wanted to ask, regarding your foot probs, do your toes turn under, I call it crabbing. All my insoles are puckered in my shoes which makes them uncomfortable to wear. This prob has meant I will have to have some toe nails removed, as they are not growing properly where they are hitting the floor. This is all because of my ankle. Just wondered if you have this too. I am looking at my new slippers, just arrived. I have to wear padders or pavers, and I know by the end of the week, the insoles will be as uncomfortable as my own ones. Also can't wear any footwear, that's not fully enclosed. If I wear even a casual pair of mules, my ankle goes into spasm and my toes start to separate with cramp !!! Do you have these weird problems ???

[EOLHPC in reply to Hidden]

Will send you a p.m. In a few min

[Pipido36]

Hi Gillyg,

I have had the same for the past three years. Come to think if it! I haven't had the pain since I had acupuncture last year in September. I had three sessions for one week and another three after 2 weeks. I guess this helped. My Rheumy referred me to have them after physio. The injection worked for a short period and the pain was back again. I don't do any repetitive lifting but the same ad you, just a bit of lifting of grandkids. I am not sure if this will help you but think you give it a try. Hope you get better. Take care xxx

[rlupus]

Hi i have the same problem have the injections as thats the only thing that helps for a while i don't want an operation either , so i use the 10% gel to , and pain relief GP and rheumy say there is not much else they can offer other than don't lift anything heavy and rest.

Good Luck.

[Gillyg]

Thanks every one for the replies. Have taken on board a little bit of everything you have all said. I was thinking to try acupuncture, I had it before for my neck. The trouble is it is expensive and it always takes quite a few sessions. I cant see how just lifting my grandchildren can do so much damage. Just very hard not to be put into the same category as Normal people I say that loosely. I will look into what CRPS is. The last time I had the injection it dented the area right down to the bone. My consultant refereed it wasn't done correctly but you cant keep going to the consultant every time you want it done. Thanks everyone, Take care xx