Very confused

[littleones]

Went to gp appointment as my results of capillarscopy and thermography were back was hopeful for help maybe even start medication as I suffer all day with constant cold toes that only warm with direct heat she looked at results said yes it shows suggestive peripheral vasospasm ie Raynaud's but she don't want me having meds in summer as she said they should not be ice cold I told her they are cold all day after about 20 minutes of being up its driving me mad and in summer of last yr they were burning hot she was confused which has made me confused😕 I've had blood tests last yr to rule out auto immune disease and capillarscopy also,I have now been refered to podiatrist and back to rheumatology.Its been a whole year and still no cures in getting warm toes back 😢.

[Hidden]

Hopefully the podiatrist will be able to help you more. I too had very cold toes for a few years -so painful I know -but now it's more in my fingers than my toes, although both suffer colour changes.

You can still have autoimmunity without it showing up in your bloods although it's much less likely. You can also have Raynauds without autoimmunity.

Re the burning toes - I've had this too and recently same in my fingers. I was at first told it's a close relative of Raynauds called Ethythromelalgia (EM). But my toes didn't turn red so the neurologist diagnosed small fibre neuropathy. Now I do have the colour changes with burning and swelling in my finger tips so I think it is this for me. Many doctors just call it all Raynauds as they haven't ever come across EM - it's thought to be pretty rare- and really there is no cure for Erythromelagia apart from low doses of Asprin which can help some people with this burning by thinning out the blood - but this would be for a rheumtologist to diagnose and treat. .

[marilynmcl in reply to Hidden]

Hi twitchy....I take Clopidogrel [75gms] for blood thinning...can't take aspirin as stomach probs. Would definitely think that littleones should be seeing a rheumatologist on this.

[Hidden]

I too had Royal Free test with result no deformed nail capillaries but "quite significant peripheral vasospasm" in hands & no mention of Raynauds. I asked my GP & he said I didn't have Raynauds so I wonder if your "i.e. Raynauds" is correct. The drug to have the most effect is Fluoxetine (the old Prozac) & I also on 75mg Pregabalin (Lyrica) any more & it makes me woozy & recently as my BP had increased put on Amlodipine which is calcium channel blocker /vasodilator & had some effect. Feet still numbish but the solid, hard, cold, frozen gone. When I had sores on end of toes dabbed them with Friars Balsam (& then talc to reduce tackiness) twice a day & this healed them. It would seem the "anti-depressant" drug route has been good for me.

Hope this helps with your mystery symptoms

[Hidden in reply to Hidden]

So what causes the vasosoasms if not Raynauds then? Surelh if there are no capilliary changes this means vasospasms are primary Raynauds i.e not autoimmune/ connective tissue related (yet)?

[littleones in reply to Hidden]

Yes I think that this must be the case I'm kind of giving up asking the doctors but I'm going to see podiatrist and back to doctor next month I have faith in the royal free hospital and he was quite sure it was Raynaud's but doctor don't want me having any meds for it in summer so I just stick with all my stop smoking and exercise and see how I get on for now.Many thanks for help and all the very best☺

[Hidden in reply to littleones]

Good to stop smoking and do exercise - better than doctors and medications - good for you 🙂