Feet problems help needed please.

[Haz58]

Just been told I have RA and referred to hospital. I can’t take anti inflammatories, they affect my breathing and I have gastric reflux. My feet are really hurting and 1 toe is starting to lean across another toe. Besides taking co-drydamol for pain does anyone have any tips to help reduce the inflammation instead of me just trying to numb the pain please. On hospital web site it says I could have to wait up to half a year to see anybody! Desperate for help. X

[Lolabridge]

Hello Haz

I’m sorry to hear you have been told you have RA. By whom? Diagnosis is usually made by a Rheumatology consultant at an initial hospital visit. Have you had that? If not it’s important to try to get an urgent referral because early treatment with the proper RA drugs helps to minimise joint damage.

In the meantime, a short course of steroids will probably help you a lot by reducing inflammation and pain. You may need to take a PPI like omeprazole with them (if you don’t take it already with your reflux problem). Your GP can prescribe these.

I had toe problems like yours with bunions years before I was diagnosed with RA. I saw a private podiatrist who specialises in biomechanics and had orthotics made for me. Wearing these reduced considerably the toe movement and pain.

Do go back to your GP and ask for an urgent referral and effective medication to help you whilst you wait for your hospital appointment.

Do let us know how you get on.

[Haz58 in reply to Lolabridge]

The doctor did blood tests. 3 doctors at my surgery have said my RA count is extremely high and they’ve put RA on my records. They did refer me on a January but then lockdown happened I’ve been on a omeprazole for years. When they put me on Naproxen they doubled my Naproxen but after 3 days I was having breathing problems and sent to A&E. I was given an ‘MOT’, ecg, chest x-ray etc and was told it was probably the Naproxen as it’s a rare side affect. When I saw my 3 weeks ago befire the blood tests my feet hurt but my toes weren’t moving over then. It’s happening do fast!

I’ll do as you say and ring the gp on Monday and tell them about my toe. This is frightening what is happening to me. I do a job in the house, like this morning I wiped the bathroom over, now I’m just so tired! It’s horrid.

[Lolabridge in reply to Haz58]

Unfortunately I think you are also now discovering fatigue is one of the awful effects of RA. Steroids would help with that too so do ask your GP if they would be a good idea for you.

[Haz58 in reply to Lolabridge]

Thank you. You’ve been so kind answering me. I don’t feel so alone in this now. This site is going to be a godsend to me I think. Xx

[Lolabridge in reply to Haz58]

I have found the support and help from members of this site to be just what I have needed, from initial diagnosis two years ago and through my RA journey. I'm pleased to try to help you too from my own experience. Sometimes we just want to have a moan or to share some news, good or bad, and it's great to know others will understand how we feel in our time of need.

[BonnieG123 in reply to Haz58]

I take acetaminophen (Tylenol extra strength) instead of aspirin as aspirin does not agree with my stomach either. It does help a bit and when I take two extra strength at bedtime it helps me sleep. But steroids now would be your best bet. Ask your doctor ASAP. I was on methotrexate for a year and a half but had to stop.

I couldn’t afford orthotics so I found Crocs that helped me walk with much less pain. I can truthfully say 10 years later that my feet are much improved. Best wishes.

[Nicanoo in reply to Haz58]

Naproxen is not good for your tummy or reflux either, could make you poorly. Try soaking your feet in a very warm bowl, that reallt helps me. X

[D_aisy in reply to Haz58]

I have the same issue as you. Due to my gastric reflux, hiatus hernia and LPR I can't take anything other than a paracetamol. I too was told I was RA Positive by the GP & then left for 2 years before they referred me. My hands and feet were the worst. I'm told they are now slowly reopening and doing face to face appointments for new cases again (I'm in the south west so this may not be everywhere!) I found a course of steroids, a LOT of ice, soaking feet in buckets of water and puppoing a hotwater bottle on your feet for bed helped. I swapped to Esomeprazole too and that made a huge difference for my tummy. I double the dose on the morning of my methotrexate. I think I napped my way through Jan & Feb and possibly half of March but I am slowly feeling like I can get through the day again in my new pattern - I am just so frustrated that I cant clean the whole house in one go. Really push the GP for the referral and really take care of yourself Its a rubbish road to be on but this site is awesome and so so supportive. Good Luck!

[Sallysuk in reply to D_aisy]

Is your GP or rheumatologist aware of you taking double dose esmoprazole on methotrexate day as I was told I could not take together. I too have hiatus hernia and would love to be able to take them.

[D_aisy in reply to Sallysuk]

Yes I was told by both of them to do it. I always take my tablets when I get up and the methotrexate at night. I was obly told no folic acid on the same day and no gaviscon or stomach pills within 4 hours either side.

[oldtimer]

There is some useful information on the NRAS website on getting diagnosed that might help you to understand what happens next.

But you should be having an urgent referral to the Rheumatology team. Please press for that to happen - the hospitals are being pressurised too to catch up with their referrals as soon as they can in case there is another wave. So time is of the essence as they say.

I have been impressed with the number of appointments I have had in the last few weeks as they 'catch up'.

[Haz58 in reply to oldtimer]

Thank you. Would I chase the hospital department or my gp?

[Hidden]

Hi Haz58,

Sorry to hear your having problems with your feet, that’s where my RA started 23years ago. When mine were hot & painful I put mine in a bowl of cold water to help take the inflammation down and took paracetamol to help with the pain. Unfortunately fatigue is part and parcel of RA and you learn to listen to your body and rest when you need to.

Like the other replies say, get in touch with your GP and explain what’s going on at the moment and even take some photos to show them as you need professional help.

Try not to worry to much as stress & anxiety only makes it worse, and be assured we all understand what your going through. This is a fantastic site full of helpful and experienced people, so please keep us informed as to how you get on, take care. 🤗X

[mhlmom]

Rather than steroid tablets, your GP can also give you a steroid injection in your bum. It usually starts working within a few days and can give you relief for weeks. That’s what I had whilst waiting for my first appointment. But you must keep your GP informed as it’s escalating as they can escalate your referral accordingly. I find heat helps the pain and I give in and sleep to deal with fatigue. Good luck x

[CallMeSunny]

Hello Haz. So sorry you are having such a horrid time of it at the moment. Being in pain, worried and anxious about your new diagnosis is something I truly sympathise with, so I’m so pleased you found this wonderful site. You have already had such helpful advice given in previous replies ...so you will be busy phoning round in the morning no doubt! Like all on here, you will find marvellous support, useful tips, help and friendship from those ‘in the same boat’. I had never quite appreciated just what ‘You need to pace yourself more’, uttered to me constantly in my younger energy filled days, until RA decided to become my constant companion. Keep ‘tuning in’, keep us posted on how you get on. Best of luck, look after yourself. 🌞 x

[Sheila_G]

I agree with everything Lolabridge has said. I hope you get a Rheumatology appointment soon. x

[nomoreheels]

Hiya Haz58, welcome. Well it does sound as though you may receive a firm diagnosis when you see a Rheumatologist, only they can diagnose for sure. It was similar for me, my feet were most noticeably affected prior to diagnosis. I was only able to walk on the outer edges of my feet following suden onset, & with some difficulty. I wasn’t living in the UK at that time so I was fortunate, it was only a fortnight after my GP took bloods that I had a diagnostic appointment so no time for corticosteroids, but she did prescribe an NSAID (plus omeprazole) & pain relief. Fortunately she had a Special Interest in Rheumatology (took further exams as a GP) & knew that only 4 weeks prior all was normal to where I presented just wasn't right. It would seem as though NSAIDs wouldn't be an option for you but I wonder if you see your GP again if he/she would prescribe a course of steroids to help ease the inflammation. It won’t stop the problem with your toe, though there may be a chance that may return to normal, if you're able to start treatment promptly. My bunions & bunionettes retreated after a few months.

There are things like toe spacers, or separators, that you could try. The earlier after they start crossing the better for these whilst they're relatively pliable. Have a look online & see which would be most appropriate.

I do hope you're able to be seen as soon as possible but it might be an idea to ask your GP if his/her intervention is needed to bump you up the list if able. If you've any other questions or need further help from us in the meantime we'll be happy to help where we can.

[Haz58]

Thank you so much everyone! I have read stress and anxiety is bad for RA so am trying to keep calm, I did a course of CBT during lockdown, pre planned in a January when all of this seemed to have started, looking back, my GP referred me as too much had happened in the past 2 years and I wasn’t coping well. And it has helped enormously with that side of it. I’ve also done a kind of Zoom meeting hypnosis course for 4 weeks which gives you ‘mantras’ that help to calm you, that was good too.

I’m so used to being able to do anything I want to do, like concreting a patio that I did in April. Now like you say I need to listen to my body. I’m was learning that the hard way but am getting better at it but it certainly is frustrating at times, I don’t think hubby quite understands yet, but he’s being very supportive.

A gp mentioned steroids but then said with the virus around they dont like to give them at the moment. So I’ll ask about that again too.

[ruth_p]

You could try soaking your feet in cool water and Epsom salts in the evening to help reduce the inflammation. You could try some bio freeze spray before you put your shoes on but I’ve only had mixed relief using those kinds of spray. Can you use voltarol gel? Or does that also affect your breathing? Good luck with your diagnosis.

[Haz58 in reply to ruth_p]

Ooh did cool water work for you? Ive read conflicting info on line. Some say cool others say warm so I’ve been doing warm, which hasn’t made a lot of difference. I’ve been afraid of cool incase it makes it flare up more. So any thoughts on that would be good. I did try using voltarol gel yesterday and it seemed to help a little. Didn’t use a lot in case I had a reaction but only putting it on in the morning when the foot pain is terrible when I get out of bed seemed to take the edge of. X

[ruth_p in reply to Haz58]

I was told by a nurse once warm first thing in the morning to help loosen the stiffness built up over night and cold in the evening to reduce swelling. I always find cold helps more.

[Haz58 in reply to ruth_p]

Ok thank you. I’ll try that! X

[Nicanoo in reply to Haz58]

Very true, warm water works for me but cool can help others, try everything until you find what suits you. Stress definitely can trigger a flare, so one step at a time. Lavender spray snd try to relax when you can x

[Pasjc]

So sorry about your pain and to be diagnosed during lockdown isn't helping. You've had very good advice from members and you will get more. From myself and it might not do for you but I find cutting down on carbs makes a huge difference might be worth a try. Stay strong it will all be OK xxxxx

[Haz58 in reply to Pasjc]

Aww thank you Pasjc! Yes I’ll try anything! Xxx

[Ailsa-NRAS Partner NRAS]

Hi

We know from calls to our helpline that quite a few people including those waiting for a diagnosis are having trouble accessing rheumatology at the moment due to COVID. If your GP doesn't do an urgent referral for you, gently refer to the guidelines and ask why he/she is not providing an urgent referral (NICE RA Guideline says GPs must refer within 3 working days if inflammatory arthritis suspected). If once referred you find the waiting time is long (again guidelines say should be within 3 weeks of GP referral) and you are having difficulty getting seen, please call our helpline and let us know. We might be able to help and we are gathering data on people with suspected RA/IA who are not getting into the system. As a potentially new diagnosis, you should also be seen in hospital (it will be safe) rather than dealt with by phone. Although if the letter from your GP and your test results are very clearly probably RA, then a phone consult sooner would be better than not being seen for a longer time.

Hope you get your diagnosis soon, it sounds like you've probably had it for some time if you are starting to see your toes change.

BW - Ailsa - NRAS National Patient Champion.

[Haz58 in reply to Ailsa-NRAS]

Thank you Alisa. I’m going to call my GP surgery tomorrow to find out if they have done/ chased the referral, they said they were going to do it 3 weeks ago, but then another gp said he wanted more blood tests. And I’ll tell them about my toe.

I had blood tests in January and they put RA on my record then, my new tests showed my RF count had trebled in July since January.

[Chrissycl]

Can you use essential oils? I do and find a blendof them really helpful when massage into affected joint.

I use a mix of lavender, eucalyptus, rosemary, marjoram and ginger, sometimes I add tumric oil too and blend them with a carrier oil.

[Haz58 in reply to Chrissycl]

That sounds interesting. Thank you Chrissy. X

[Haz58]

Hi all. So I’ve just got through to the GP surgery and they have sent my referral letter and it looks like they’ve asked for me to be seen me urgently as it say ‘action by 11th August’.

Besides my feet, my knees are now hurting terribly. I’m getting so down I just want to cry. I just hope with everything going on I do hear from the hospital very soon. Thanks for all your support. My mum had this but she was such a brave and strong woman she hardly ever complained. I’m trying to be like she was but it’s so hard at the moment. Stay safe everyone. Xxx

[Sallysuk in reply to Haz58]

Looking back my RA started in my feet but I did not seek help until it affected my knees hands wrists and elbows. I was seen by my rheumatologist within 3 weeks after an urgent GP referral and now 2years later I feel normal again though not able to do quite so many things, maybe my age, so be persistent with GP. Regarding your foot problem I hated lace up shoes/trainers all my life but I bought some Sketchers boat shoes with laces in desperation as walking on holiday was impossible. They were like a miracle giving my feet support with cushioned insoles/soles such I could walk so much better again, never wear any other shoes now.

[AmblingA]

Sorry to hear that Haz. You must get the right treatment, anti inflams are not the answer. As Lolabridge says, you should get an urgent Rheumatology appt, to see a Consultant. Read the EULAR Guidelines, you want to aim to get to remssion if at all possible as soon as poss.

Best of luck, you must push for the correct intervention. This is key. xxx