Feet & hand problems & pain.. Any ideas folks??

Since about June I've been having varying degrees of pain in my feet & hands. When I wake up in the morning or the middle of the night (sleeping terribly), my hands, ankles & feet are incredibly stiff and painful also my feet have a burning sensation. Is this rheumatism (RA) or more of a circulation issues?? Initially I can hardly walk on my feet... It's as if the soles are swollen and in parts it feels like I'm standing on the bones so painful but thankfully once I'm moving around the pain subsides until I've done a bit too much (and that's not a lot) and it starts to come back!!!! My hands also improve unless I knock them. I'm on plaquenil which has been up'd from 200 to 400mg which helped at first but not anymore, and painkillers. Rheumy didn't say much but am awaiting scans on both hands & feet. Other joints are stiff as well but nowhere near as bad as my feet. I have APS and am being treated for producing far too many antibodies but they are still reluctant to say the word "lupus". Any suggestions as to what this is would be really appreciated!!

18 Replies

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  • I have this and other symtpoms of lupus although my dr dismisses my symptoms like anything else I have.my hand sare swollen and fingertips red and sore and fingers turn up at the tips(with thumb known as hitchhikers thumb cos of way thumb bends back.feet feel like you are walking on glass

  • I have this with my hands and feet, think its called neuropathic pain - I also have raynaurds. My GP prescribed garbapentin which has worked brilliantly for the swollen burning feeling, and has dampened down the feeling like I am walking on cut glass. It took a while to get the dose right but has been worth it.

    Hope this helps. :-)

  • Many thanks for replying folks and thank you Manolo33 for putting a name to this terrible feeling, I will look into neuropathic pain. Does this get diagnosed with scans? Because I'm awaiting dates for my hands & feet to be scanned and theni go back to the reumy in October. Thanks again peeps & hoping you are not being effected by the hot weather, regards M x

  • I have had a CT, MRI and X-rays all of which showed nothing significant it was my GP who suggested trying the tablets as it can help - and it did. Unfortunately it's like everything else connected to lupus - trial and error. Take care. X

  • I also have this I take Neurontin for nerve pain and Vivimo (anti inflammatory) for join pain along with 400 mg Plaquenil. This mix seems to work for me and it controls the pain.

  • Courage! I've been managing these sort of symptoms for many years. It took the NHS a loooong time to get down to diagnosing that SLE was the underlying prob. Seems to me your drs are concentrating harder on figuring your hand/feet symptoms out. I agree with the diagnosis direction manolo mentions. My feet & hands mix is: SLE & hypermobility as primaries, sicca/sjogrens, raynauds with simultaneous erythromelalgia, peripheral neuropathy, some sort of vascular deterioration which is being figured out, osteopenia, ligament & tendinitises, mortons neuromas & bursitis, and in one hand a chondrosarcoma etc. my impression is that our extremities can be affected significantly by all these kind of things, which makes a broad mix diagnosis the norm...the trick seems to be to find a regime that helps generally with a key ingredient that really helps generally (eg at first a rheumy tried me on nifedipine, which made EVERYTHING all over my bod but especially my hands & feet REALLY REALLY worse: stopped that rx after only 3 days!)

    Plaquenil 400 mg daily has slightly helped me over 2 years.

    Amitryptiline 20mg nightly for past year likewise

    Low dose 4wk 10mg oral prednisolone tapers 3x a year too, started last may-June & on 2nd session now

    Arnica gel on hands & feet at least 1x daily

    Am trying Steroid injections in MN/B in worst foot - had 2 and about to have no3

    Antiinflammation diet & supplements for 10+ yrs

    Foot & hand exercises, but don't push them too hard

    Full foot bespoke orthotics for many decades

    Following the advice on the raynauds & scleroderma assoc website (they have a forum community here on healthunlocked)

    Following advice on the burningfeetassoc website (google TEA)

    Haha: if I think of anything else, I'll add a PS! But, really: you can treat these feet & hand symptoms! Just keep as calm as poss & persevere!

    Take care & good luck

  • Many thanks Barnclown for your very informative reply.. Am amazed at how many different things you are having to be treated for!! I will obviously look into them all and yes have only recently started to change my diet to anti-inflammatory. So thank you & best wishes to you and although I know you (we) need to avoid stress it very difficult for me at the present time my husband is having terrible memory problems as well as his own health issues... Difficult times but as you said I WILL preserve because your info will help me! X

  • That's the spirit: keep your chin up, dear! These sayings seem like just cliches, but seems to me sayings like these get repeated for a good reason: they really mean something & act like mantras, at least they help me that way!

    it's very possible your doctors will surprise you by cracking your feet-hands symptoms 'hey presto': just try your best to communicate with them clearly and if poss rate your symptom severity for them concisely (eg on scale of 1-10). What really helped me get my drs' attention was when i changed my approach to: well, dr x, i am managing daily 24/7 a complex set of symptoms. The symptoms i seem to be able to cope with are these: X, Y, Z. But the symptoms i really struggle with are these: P, Q, R. (hope you get my drift, maraid). And please Forgive me if you're doing this already! Take care

  • Maraid, I am having the EXACT symptoms. Did you get diagnosed? What was your diagnosis ?

  • Hi maraid, I have exact same problems, very dangerous coming downstairs I the morning.!!!! I have lupus, but some RA overlap. The scans I had to show this,( not lupus), were a bone density scan and an isotope bone scan. The isotope showed inflammatory arthritis in my feet, knees, hips hands and shoulders. It also showed that my 8/9th ribs, right side, were still fractured after 2 years.!!!!

  • Sounds like you have plantar fascitis (inflamed tendons and ligaments and muscle in soles of feet). I have had exactly same with my lupus and also in my hands with hitchhiker a thumb as someone mentioned. What worked really well for me for my feet was ultrasound treatments I initially got through physio on NHs. Worked so well I bought own machine in e bay and treat it myself now not just feet but wherever Inflammation crops up. Plaquenil seems to reduce joint issues for me and I also take cinnamon tea and flaxseed oil and vit d to help body cope! Hope u get sorted x Ali

  • Hi All

    Yes sounds familiar. I feel like I could write this on nearly every post. I am relatively new to all this, with new issues evolving. i am trying to remain positive but not always managing it. I was started on methotrexate, as I mentioned to my consultant how I had actually had to make my poor mum walk so I could get in her wheelchair. My feet could go no further. It was so embarrassing, she even offered to push. Luckily there was no way she could manage that, I also asked her to keep her distance. I'm 45 and she is 84, recovering from a radicle vulvectomy. Bless her she was wanting a bit exercise but I was mortified.

    It feels like the tendons are really tight, both in the feet and in the calfs. All the small joints hurt. Usually if I'm up too long and that's not long it starts.

    Since Xmas I have piled weight on so I'm sure that can't of helped but even though I have ate a little more and I'm no longer anywhere near as active, it's really surprised me at how much has gone on - 2 1/2 stone. I need to get active but it hurts the feet. I love swimming but its not until 8pm that the pool is free for us adults. Talk about frustrating.

    But saying all this, the family normally like skiing, we could neither afford it or see the point with me as I am to pay for a week in the Alps. So we are going to Glasgow Snow Factor this Easter and I WILL ski for the 4 hours, sore feet, legs, ribs and anything else this darn disease can throw at me or not.

    Take care All

    Ps the hands are ok at the minute so at least I've got my knitting and I will finish my throw lol xxxx

  • Hi whathappened, I've had problems with my feet/ankles since xmas time. If you read up on both tendonopathy and plantar fascitis you may well recognise symptoms - I picked up on the fact you said worse after resting (i.e. mornings) and also if you do too much. Also that if you've been poorly you won't have been as active as usual and this can contribute to plantar fascitis.

    PLantar faxcitis is often experienced by runners due to strain of overwork or running on hard surfaces, but also occurs in people who are less mobile, i.e. us.

    If you have tendonopathy - which sounds like you describe, painful and stiff tendons' this can cause plantar fascia. Good luck with it, mine's been awful for months,started to get better around a week ago (coincidentally - when I was seeing rheumy - sod's law really) and she then said 'oh you'd have been in much more pain if it was either of these conditions.

    She didn't seem to take into consideration that I told her I hadn't left the house for two weeks due to being in agony and had tears with every step I took.

    I think it improved with use - despite the awful pain a family trip to London meant I walked more than usual and although in agony overall it helped and symptoms were not as bad as when I saw rheumy - however, she must have thought it significant to receive treatment as she's referring me for physio and intensive rehab.

    All the best.

  • I can relate. I know I need to exercise, but it hurts my feet and other joints. So I am not as active as before. It really sucks. I feel your pain.

  • Hi

    Thanks. It sounds like Plantar Fascitis. As it does seem better if I get moving but not on my feet all the time. We had a lovely walk yesterday and it set it off. I never wear shoes in the house even though we have wood floors but recently I have had to put slippers on. It all seems to match.

    I will continue to try and stretch the feet and legs and hope that the methotrexate kicks in soon. I have only had 2 doses and I understand it can take 3 months to take effect.

    I'm sorry but I laughed when you said symptoms had improved by the time you saw the rheumy. It's so typical. Also love the way they never quite hear what you are saying. I often honk mine has got it and then I get my copy of the letter and think - I never said that! Lolx

    Thank you again and good luck with physio. Xxx

  • I have pains in legs from knees down and burning feet, i was diagnosed with small fibre peripheral neuropathy, my advice is go see a neurologist asap

  • I have lupus and sjogrens and my feet are tge same. As soon as i put them on the floor they feel like they are bruised. It goes away but as soon as i have been resting and stand up my feet are painful. And my muscles feel like they have been strained by doing too much exercise. I have no energy or strength in my body and alot of everyday chores vecome such an effort. I go back to my rhuematologist in june. 

  • If I do too much which is not a lot the tips of my toes turn blue lack of blood flow I'm assuming.I cannot stop even when they are asleep my toes.I have to keep going until my daughter goes to bed.But my feet and hand were the first of many symptoms of lupus tho RA is supposed to feel the same so.Its all up to doctors and testing to give us any answers I suppose.

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