Burning feet.

[mirren]

Having a bit of a flare (swollen painful hands, low deep shoulder pain ) and slowly the symptoms I hoped had gone are creeping back, hip pain and one of my most hated, burning feet.

Burning throbbing so badly I wake up and look at them expecting them to be huge and bright red, but apart from some fluidy swellings on top of my foot at base of toes they look normal. Back to not sleeping.

Got an appt at new GP on Monday, rheum in February. On mtx 17.5 weekly and Hydroxychloroquine 400 daily

I think Hydroxychloroquine is making my skin very white so even when my joints are bad they only look swollen not hot. Most folk on here won't be on Hydroxychloroquine as its not used much in PsA as it can worsen or trigger psoriasis. I don't have psoriasis, just family history, and as Rheumatoid factor neg and DIP joints affected I'm treated as PsA for now. I was put on Hydroxychloroquine during a period when I was suspected MCTD, was a bit worried when they went back to PsA but I've been on it since September and no psoriasis ane its made a big difference to my fatigue and concentration, and until last two weeks, my joints.

But what can i do about these feet?? Why do they burn like this? ?

[Hidden]

Burning feet are part of the problem when flaring and overdoing it. Mine are constantly burning at the moment as I'm going backwards and forwards to visit my hubby in hospital. At night when I put them up they throb wth it as well.

Throughout your day are you able to elevate them at all , it does help to relieve the symptoms. Ensure you don't get cold feet as this will make the burning more. I wear socks night and day, you can buy proper bed socks which are soft and roomy for your feet, I've even been known to wear these during the day at home to help with the burning. I've found that tights, stockings or stockinets are not warm enough, and they make my feet worse.

You don't need to have Ps to get PsA although it helps to get a quicker diagnosis, they're are quite a few people know who have PsA without Ps. Your dosage of Mtx is quite low, have you recently been placed on this, and have they written in your book the escalating dosage over weeks? Only when I was taking it I went to 25mg over a matter weeks increasing every two weeks till I reached the full amount. Never had hydroxy so unable to comment, but yes I do realise that people with RA tend to have this one more than us PsA people. Perhaps as you say your team are sitting on the fence at the moment to see his your symptoms progress. Excuse my ignorance but what is Mctd?

[Hidden in reply to Hidden]

Ok just looked it up!

[mirren in reply to Hidden]

I had a ? SLE illness for about 6 months about 12 years ago - low wcc, joint pain, lymph nodes up, lichen planus and overwhelming fatigue. So when I started getting muscle weakness end of September (I could barely lift my arms and driving was exhausting me) the rheum clinical fellow decided I had MCTD.

They were about to increase mtx then (I started in mid august) but instead started Hydroxychloroquine and gave me a month of prednisolone. I think I need to increase my mtx too. I doubt GP will do that, and not sure my rheum nurse will let me as she notoriously under counts, only ever looked at hands and elbows (das scoring effectively) so if I don't get assessed with PsA score then my disease activity is underestimated. I have been too weak to fight and just grateful to be better than I was but I can feel it slipping back. I am in the unlucky position I don't get raised ESR or CRP so I accept its hard for them to monitor PsAs who don't prove they are flaring in blood tests

I might try ringing the advice line on Monday and see if I am successful.

I know I don't have to have psoriasis to have PsA but lots of people have said it will come in due course... I of course am hoping it wont! And starting Hydroxychloroquine was a risk they really shouldn't have taken, though I am happy it seems to have improved things.

I am on my feet a lot as I work full-time , and no, cant ever put my feet up even when i sit. But my feet never really feel cold, even when it is cold - (which i just realised - even on thge quarter mile walk from my car to work, my body can feel cold but never my hands or feet, must be all the inflammation.) I can't imagine wearing socks I would roast!

Thanks for answering - will let you know how it goes, and hope you are keeping well and hubby is too. X

[Hidden in reply to mirren]

Scoring for PsA is different from the Das for Ra, as everything that your inflamed on is added to your score. With RA 28 is high score with PsA you can score anything above that number. Mtx can only be changed by rheumy team and not by your GP. Markers for Crp and esr, everyone I know who has PsA these are always on the lower mark compared to others. One of the things we complain to our teams about, but a then they do take this in to account.

Frm your description you sound to me as though you have such a lot going on wth your immune system, that one pill will not fix all situation. Let's hope others will see and be able to relate to what your saying and help and advise a bit more. hope you get it sorted soon. Xxx

[mirren in reply to Hidden]

I know, I have had a rough time of it with rheum messing me about. I have been well from 2004 until 2015 when I had pericarditis in January then inflammatory arthritis in May but ANA negative so the rheum who decided I didn't have MCTD and its probably PsA is the winner at moment.

I will be arguing more strongly to be scored as PsA now someone has come out and said that's what it is instead of seronegative or undifferentiated inflammatory arthritis. My hands are changing shape so even though symptoms are a good bit better not convinced the process isnt continuing.

[Hidden]

My feet like certain sorts of exercise. Preferably on uneven ground i.e. off-road! I suppose that kind of surface sort of massages them as opposed to the pounding they take on flat, hard surfaces. It's not such a problem at the moment, but for ages they'd start burning when I started my tai chi class but after about 20 minutes they'd be good as gold and stay comfortable for the rest of the day.

Great advice here about loose socks, putting the feet up etc. Have you got some leeway at work with appropriate footwear? I'd go for breathable socks and easy-fitting shoes. On my big feet Crocs look pretty awful but their lightness and the shape of the footbed work well for me.

[mirren]

No I'm a nurse and work with blood borne viruses so wipeable filled in shoes. I need shoes that cover my foot for stability as slip ons I am going over on my ankle in, so wearing lace up brogue style. The ones I have now are not completely flat, so supporting my instep. My feet hurt all the time, especially top of them, the metatarsal bones feel like someone has jumped on them, and my ankles too (i cant straighten my feet under me if i have to kneel down) but I am used to pain now, and I accept it, its in bed at night, the lck of sleep, the jumpy restless legs and arms and the burning that get me down.

'Burning feet'

Lord Almighty,

I feel my temperature rising

Higher higher

It's burning through to my soles.

Feet, feet feet,

You gonna set me on fire

My plates of meat are flaming

I don't know which way to go...

I sing this to myself when I am lying wide awake at 03:00....

[Hidden in reply to mirren]

Lol! I sometimes make up songs too .... though that one's pretty good. They say that suffering engenders creativity!

I think all this might come down to two little words: disease control i.e. treatment that works.

I thought my feet might have had it. I know there's some damage and when walking got really painful last year I feared the worst. But PsA wanders around the body and unless it causes damage even the worst affected parts of the body can, in time, return to normality or near normality. It is a distinct possibility. My PsA specialises in fleeting but severe pain e.g. feeling like a piranha's hanging onto one of my toes for a few seconds. Maybe I've got a sick sense of humour but that actually makes me laugh - it's just so flipping ridiculous. But even some joints that have been painful for months or years and have some damage - my knees for example - can ease up eventually.

The quest for what works is an ongoing one for most of us, at some points anyway. At the moment I'm on Humira plus Mtx and I also take turmeric tablets which my rheumy thinks are worth a try. I hate to tempt fate but all my joints are behaving themselves pretty well apart from the occasional piranha and my energy levels are quite good too. I was diagnosed in 2012 and I've had a good rheumatologist since 2014. Apart from the boring but vital observance of super-clean living (mostly), it's my rheumy and the drugs that have sorted me out.

[mirren]

well Elvis gets most of credit for my wee song!

I'm going to take a few days off sick I think - - the house move, disability discrimination case, a recent bad cold and now this flare - I am pretty under the weather. My shoulders and wrists are worse today, dropping things, struggling to push my self up from my chair, even putting our food for the cat hurt my shoulders and wrists.

I have been doggedly going in but I think I need a couple days to sleep and rest.

Glad you are having a good period, its reassuring too. I like your posts, you empathise as its still not so long ago you were where us newer folk are, but can testify that it can get better.

I will try turmeric next as if you lovely rheum says it might help I trust him better than my duff ones! I am seeing new GP tomorrow and might ask for amitryptilline as its been suggested might help my night burning.

Will let you know how it goes xx

[Hidden in reply to mirren]

I hope you have a really relaxing few days. Sounds like good medicine.

[Bumley]

I have had burning feet for about 10 years. About 6 years ago my GP suggested I take a small dose of Amitriptyline and after two months I gave up, it did not do anything. He then suggested Gabapentin and that was the same. Just learned to live with it. I have heard others say that these remedies worked for them.

[mirren]

Well my new GP was absolutely wonderful. Offered to refer me to a new rheumatologist. Concerned I am on meloxicam and mtx, but I don't want to stop it as it helps with pain a lot. He gave me amitryptilline and its a wonder drug! 4 nights of great sleep and my feet feel much better!