Having a bleak time and can’t see the light at the end of the tunnel. Started MTX for RA about 10 months ago. In December I began to feel a bit more my old self. But since early Jan everything down hill again. Main problem is swollen soles under my feet which feels like someone beat them. Very painful to walk and also just lying in bed as heels hurt and toes feel full of pressure. Also widespread stiffness and fatigue. Hospital rheumy clinic never looks at feet - I don’t understand. I took off socks and showed swelling but no interest. It is preventing me working as I cannot manage long standing commute by train and then walking between stations/buildings. I’m self employed so no sick pay either.
Have told hospital this, but again, no interest. They just said see podiatrist about feet who when I did eventually see her said there is no help for people from my postcode as the local commissioning group has chosen not to fund podiatry services, so appointment complete waste of time. This despite Nice guidelines for RA saying RA patients should get insoles etc. Have ordered some insoles off Amazon but that won’t address what is causing swelling. I saw GP who thinks it is sign RA is breaking through, meaning MTX not working. Next consultant appointment is in June. That will be 6 months since this bad period started.
Worst thing is the feeling that no one actually listens, and that treatment choices depend on political funding decisions, not on what your body needs. I go to appointments and come away with no progress just feeling utterly bleak as if no one wants to help me or believe me. I am so upset at feeling it is a constant battle to get help and I find this alienating feeling with the health service just as bad as adapting to the disease itself. The thought that I am going to have to engage with hospital services for the rest of my life is so depressing and stressful. I dread going there and feel so alone at appointments. It feels nowadays like the agenda is to put as much back on the patient as possible because it’s a way of not having to spend money the hospital haven’t got.
Sorry to send such a depressing message but I feel stuck in a grim situation and can’t see how it is going to get better.
Has anyone had this under soles of feet swelling and if so what helped it get better?
Thanks for reading.
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BlightyFiveStar
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Im so sorry to hear this. My feet are troublesome too, it's awful.
Your care doesn't seem to be meeting your needs, it should do. You could try contacting the rheumatology dept direct and ask for help, tell them how bad your feet are and you cannot wait 'till your next appointment. If you have they specialist nurses at the department they could advise you to. Keep contacting them until they listen.
Thanks for reply. I already did that and saw specialist nurse who literally didn’t want to look at feet and sent me to podiatry which led to the ‘no funding for you ‘ conversation.
Morning- seems wrong to put a 'like'- so sorry to hear that things aren't brilliant for you just now. If it were me, I'd make an emergency appt with your GP today. Maybe ask for a steroid injection, tell them exactly how you're being treated by the hospital and get them to call call them while you're there. Mine had to once and boy- did they get off their **ses!
Thanks. Unfortunately steroids don’t work on me so that option has been ruled out already. When I saw gp last week he said I should try anti inflammatory gel Fenbid on feet and go back to hospital in 2 months if no improvement. No one seems in a hurry
Yes. Get onto gp if not try again at hospital. Its so hard I feel for you. I have feet issues but not same as you and my care team are more helpful than yours. I know its hard physically and emotionally but do get help. Those who shout (metaphorically speaking) loudest get seen . So hard for you. Maybe friend or family can give you some emotional support to give you energy to keep pushing to be seen. Someone else with more experience may well have better idea of what you can do on here. Take care ☺.
It really isn’t good enough. It’s hard when you’re in pain and feel up against it but I think you should see your GP again and insist that something is done. It sounds as if you need a treatment review and you can’t wait months for that, it’s crazy . x
Yes, getting inflammation 🔥 down eased pain in soles of feet 👣. Not necessarily a podiatric/ orthopedic issue ‘at root’ (early on in disease process), but an autoimmune/ inflammatory 🔥 issue at root (affecting overall bodily inflammation) which currently manifests in soles of feet (as well as widespread stiffness 😣 & fatigue 😴 🤤 ). Once overall bodily inflammatory response subsides, the foot sole pain could also subside.
(Think ‘whole body system’ imbalance/ inflammation 🔥 — not just the specific areas (of the moment) manifesting pain, etc..)
If inflammatory 🔥 disease process is allowed to march forward unchecked, then yes, podiatric/ orthopedic issues can eventually develop if that is 1 of the areas the disease persists in manifesting. (Nip in bud 🥀 asap to minimise/ avoid progressive ‘structural’ damage & the need to add a podiatrist/ orthopedist to your medical team.)
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Wishing you far, far better physician interest (& healthcare) as well as speedy pain relief, BlightyFiveStar. 😌 🙏 🍀 🌺 🌞
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Aside: If you can’t ‘motivate’ your medics/ healthcare team 👩⚕️👨⚕️ to ‘take an active interest’ (or if you can’t find ‘interested’ replacement physicians) then it may be time to become even more proactive in your efforts ( healthunlocked.com/cure-art... ) especially as this (autoimmune illness) is a lifelong disease requiring continued attention/ vigilance. 😳 🤯 Good luck to you, BlightyFiveStar. 🍀 😌
Sorry to hear that you aren't getting much help with your feet - this does seem to be a common problem that the rheumatologists seem fixated on the hands and wrists! Have a look at the NRAS page on feet: nras.org.uk/the-foot-and-rh...
perhaps copy it and highlight the areas giving you problems for your next appointment? Explain that podiatry are not able to help because of funding constraints - the rheumy team may not be aware of this.
And if they continue to show a lack of interest then complain to your PALS team (in England).
Poor you, it's tough feeling that you are having to fight for every scrap of care. If it's any comfort my first year is so after diagnosis was the worst, apart from the pain it was not knowing the system or how to navigate healthcare that added stress. Since then it's much better, again not just the pain but also getting into a routine that means that my health care doesn't dominate my life.
I have no idea what you can do in the circumstance. Have you tried talking to the PALs at your hospital? Or writing to the consultant to say that you don't feel you can wait until June as feel you risk permanent damage? Pester power can work, so a shame your GP not prepared to pester the hospital also.
If you think it is inflammation then not sure what podiatrist could do, but might you be able to afford a private appointment just to be sure? Also, have you looked at symptoms of plantar fasciitis to check that that's not the cause? My OH has this and finds the special socks help, although they are pricey. He also has heel supports for it rather than full length insoles, and does the exercises regularly.
Have you thought of plantar fasciitis. I have had this numerous times and is exceedingly painful. It can last up to a year with no real treatment other than analgesic cream.
Thanks everyone for answering me. Spoke to specialist nurse at hospital today on phone who was more helpful and is looking into funding situation for me and to get me in possibly next week to review feet. Let’s see. Fingers crossed. Am going to take someone with me this time as I feel I become less assertive as soon as I get inside the hospital.
Thanks for following up with me. Very kind. Fingers and toes bad today, think this cold weather doesn’t help. MTX injection last night and I always feel wiped out the next day - kids off school due to snow as well so no chance to rest. Also coughing and chest hurts 😕Not sure if going to get to see doctor next week, specialist nurse said he would call me but sent holding email today so I think I will need to chase.
Problem I have is that all my bloods are ‘normal ‘ and have been throughout, even at diagnosis of active and fairly severe RA last March when I was so swollen and stiff I could barely walk or use my hands, and despite continuing pain and problems there is little to ‘see’ now from the outside. So I feel like a moaning Minnie. I’m seronegative which the hospital says gives less aggressive damage but is less responsive to treatment, and I cannot have a number of the drugs due to allergies or they just have no effect on me. So limited options. As far as I understand it I don’t meet criteria for biologics, and am scared of them anyway! Lately I feel like a truck ran me over, very weak and tired, but wonder if this is simply how it is when you are injecting a cytotoxic drug into your system every week? Struggling mentally with having to accept the lifelong fact of it, as I am a totally action oriented person who has got through previous difficult times just by pressing onwards and power of will, which doesn’t work in this situation. I have not had to stop because of my body before, but now it dictates what I can do which is often at odds with my mental idea of what I want to do. So it’s kind of a fundamental change of life approach for me which I am not doing very well so far!
I'm sero positive, but with low inflammation markers no matter what, so also have problems sometimes with pain that's invisible as far as doctors are concerned. It's a frustrating experience.
I have to say that what did help was recognising that I did have to find a better way to accommodate this disease in my life. Battling though was just making things worse. Hard when you're not the sort to let things go.
As you might have recognised I'm not a Paléo/AIP/paddison etc diet fanatic. However, my efforts to follow a strict diet/exercise/sleep regime whilst doing nothing to calm the RA did help me in other ways. So I think having a period where you concentrate positively on you can make a difference. When you have kids and a job it seems so much easier to let yourself get squeezed out and give them complete priority. But it sounds like your body is saying stop! Do try to find a way to listen to it....
Hi, sorry to hear your story. Sounds very frustrating. Totally understand as also seronegative And having trouble with feet. I initially went to a rheumatologist who could see no connection between my feet and the rest of my joint pains. Luckily I now have a good rheumatologist who recognises that feet are linked. I took prednisone and that did seem to help initially. The other option offered was a steroid injection. I want to avoid the latter so bought some insoles off amazon and they seem to be easing the problem a bit. Your pain sounds worse than mine but might be worth a try?
Thanks, I’ve never seen that sort of design- does it hurt where it goes over your toe? I have bought some full length insoles on Amazon but swelling gives feeling of pressure from inside foot which isn’t really solved by insoles.
I had the same thought about the Toe bit but no it seems fine so far. It’s a little bit tricky getting them underneath your socks so might be an issue if you have problems with your fingers but I have worn them several days to work driving and has definitely eased the pressure on my soles when using the pedals. Mine too is internal inflammation. I had a scan to show that it was bursitis. Perhaps you can suggest this too?
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