chandlermandy

Have you looked up complex regional pain syndrome? ;sounds similar to something I had and got lidocaine patches, these were the only things that helped me. Hope it helps you . X

Evaj3

I also would like advice I have the same problem, tried prednisone

TomWillingham

I have peripheral neuropathy and gout. When my gout flares, I also get similar symptoms. Just sayin'.

Barnclown in reply to TomWillingham

Snap, Tom: I was going to ask whether lupielass had been investigated re gout

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Shann07 in reply to Barnclown

Thanks everyone for your replies yes my rheummy has ruled out gout & thinks its severe raynauds combined with nerve pain? Had mri done & it was clear thankfully. But the ongoing pain is driving me mad! It comes & goes throughout the day I just wish it would settle 😕 i see rheummy again next week so hopefully will get some answers.

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Barnclown in reply to Shann07

One more suggestion - thought of this later yesterday when mulling your discussion over. So, for what it's worth, here is another thought::

am 62 now, and my infant onset lupus diagnosis was only recovered 5 years ago, so until 2010-11 I was only on prescription NSAIDs & analgesics. when I was in my 40s, i had the first of a series of Pain Clinic denervation procedures on my spinal facet joints. These procedures involved quite a heavy load of IV sedation, steroids etc. Immediately after the first of these procedures, both of my big toes became acutely painful and red, including the joint attaching the big toes to the forefeet. I could barely walk for weeks. My GP said it wasn't gout. The physio who was giving me rehab after the denervations suggested I needed the prescription of my bespoke foot orthotics reviewed: turned out I did need the prescription revised...and in time, as I adjusted to the new orthotics, my toes did calm down. My suspicion is that I was having an inflammatory reaction to the meds given during the denervations, and that my version of lupus was involved in this big toes flare, making my need for better orthotic support inevitable during the many months it took for my big toes to recover.

Maybe something in there can be useful to you lupielass...hope you'll let us know how you get on

🍀🍀🍀🍀🍀😉

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Shann07 in reply to Barnclown

Thanks for that barnclarn yes to me it is like an inflammatory reaction as there so hot & red not like raynauds i have on my hands? Rheummy is uncertain what exactly is the cause but has said my mixed connective tissue disease has took flight since feb & has thrown up horrendous symptoms for me - very scary. Currently on warfarin for PE. Im now on new treatment plan & seeing rheummy every 6 wks fingers crossed everything settles down for me. X.

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Barnclown in reply to Shann07

Oops: we were entering replies at the same mo: SYNCHRONICITY! What you're saying is vvvvv interesting! Please look at the reply from me at the very bottom of your thread...my suspicion is that you may well be experiencing simultaneous raynauds & erythromelalgia.

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Shann07 in reply to Barnclown

Yes! Thats what Im thinking. I really hope not seems vv hard to treat xx

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Barnclown in reply to Shann07

Yes, simultaneous RP+EM are daunting. But there is a lot of support out there: I'll look out the 2 links I've found most helpful and add them into my reply below (with the raynauds & scleroderma soc EM link in it)...but it sounds like you know quite a lot about this already

Yes this combo can be tough to handle & treat, but symptomatology varies between individuals. My impression is that if RP+EM aren't primary conditions, they are somewhat more cooperative & less severe. Lupus & ED hypermobility are primary in my case. It's taken time (several years), but I have figured out how to live with and lifestyle manage my version of secondary RP+EM...and I think my systemic lupus meds are somewhat damping down both conditions to some extent. It's been a trial & error thing for me

Hope you'll let us know how things go

XO🍀

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TomWillingham

@Barnclown

I think lots of rheumys overlook gout as a comorbidity factor. My rheumy once told me that people with sle aren't supposed to have gout. I had issues with gout long before my dx of sle. Very painful condition.

Barnclown in reply to TomWillingham

Yes, and, if I've got it right: gout can be brought on as a side effect of various medications

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Hidden

My dad had severe gout when I was a child. I don't know how it felt but just that it was terribly painful - he also had hypertension. Later on he went on to become diabetic and suffered arrhythmia and finally vascular dementia.

I do get burning feet and hands every night now and this was how my RA began five years ago - with excruciating burning in the soles of my feet. This has been attributed to a mixture of Raynaud's and small fiber neuropathy - not sure whether they believe it's part of my connective tissue profile or not.

I've asked several times about gout and persuaded a nurse to check my uric acid levels back in May. They were high but the GP still dismissed this and said it wasn't gout in my fingers - but wear and tear. I think gout affects men far more than women and assume the diagnostic criteria must be quite specific for my doctors to be so sure I've not got it. It isn't an autoimmune form of arthritis and is said to be controllable through eliminating certain foods (foods rich in prurines) and alcohol from the diet. My dad was put on a treatment and this must have worked because he never suffered from it again as far as I know.

Shann07 in reply to Hidden

Thank you for your reply twichytoes. Your symptoms sound very similiar to mine I also have sle & MCTD so they have concluded severe raynauds & neuropathy - they did mention nerve pain extremely difficult to treat! Great! Ive been in hospital for 5 days where i got infusion of Iloprost & started on diltazium for raynauds & 35mg amitriptyline - pain has eased but still in background. 2015 has been my worst year ever with lupus im on new treatments now including azathioprine so heres hoping this will be a healthier new year for me. Sorry to hear how your poor dad suffered, but they have ruled out gout. Happy & Healthy New Year everyone 🎉

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Barnclown

One more question, lupielass: is there any chance you have simultaneous raynauds & erythromelalgia (the burning condition)? I've been managing this since the early 2000s...my raynauds began in childhood, but the simultaneous erythromelalgia became persistent during perimenopause

Here is a good link:

raynauds.org.uk/scleroderma...

I can give you other good links - let me know if you're interested

Forgive me if we've gone into this together before

🍀🎉

PS, 2 other very helpful links:

erythromelalgia.org

facebook.com/erythromelalgia

Vsully

Hello Shann,yes I get this alot lately my toes as you say mainly the big toes feel on fire and also get alot of what feels like stabbing needle pain in my feet and hands x