To recap: am only taking a small dose of hydroxyc. while waiting to start methotrexate as sulfa. was making me feel truly sh*tty. That was about 3 weeks ago (losing track) so essentially I am not really taking anything as the hydroxyc. wasn't doing anything either, hence the sulfas.
Anyway, was diagnosed in March and have never felt as bad as most others here and have always felt my symptoms are quite mild although they have got worse. In the last week they have gone off the scale and I am in a lot of pain. When I read descriptions of RD pain online I am still not sure if it's the same thing as I am getting. In addition to my constantly painful elbows and knees (and other) it is my feet, ankles and hands and wrists that have really kicked off:
I am getting pain on both sides (the hallmark of RA, apparently) but not necessarily at the same time and my right side is nearly always worse. In my hands the epicentre is the middle knuckle (MP joint) which is noticeably red on top and has a whitish yellow bulge next to it.. Sometimes it is hot and the pain from it runs to the tip of my finger and under the nail, right at the tip. the pain runs the other way too, across the top of my hand and into my wrists. The same thing is happening in my right foot in the second toe. Also MTP joint. Again - it is horrendous on the right foot. However, although there isn't noticeable pain on the left, when I feel those corresponding joints they are tender. BUT when they do start hurting , the left sides have been even more severe than the right. I've had 3 nights being woken with pain so stingy and vice like that I'v not been able to sleep. As I have mentioned in other posts I don't have noticeable selling (another hallmark of RD): my hands often look 'puffy' but it's only slight and probably only noticeable to me. There is however noticeable heat from the inside and to the touch.
I take Naproxen 500mg twice a day as a preventative for cluster headaches while I wait for my appointment with the Migraine Clinic this week, so I would expect it to help with RD pain, but I don't think it does.
I dug out a tube of Capsaicin that I had forgotten I have last night and smothered my foot with it. Thankfully it does provide some relief but there is a limit to how long and how often it can be applied.
Does any of this sound familiar?
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I am newly diagnosed and awaiting to start methatrexate injections (as I posted on here didn't get on with the tablets) so my Arthritis is basically uncontrolled, everyday is different for me and i get new pains and symptoms all the time. I'm trying to chill out about it but its like blimey what will today bring!
Like you I get swelling/ bump next to my middle knuckle , I also get alot of pain where my tendons join my bones so back of foot etc.
I just think there must be alot going on inside, inflammation can cause other problems ie nerves can be affected , vascular changes. I would though if really worried contact your rhemy nurse. It's still early days for us so some things might be classically arthritis related whilst others might need further investigation but only people knowledgeable about the disease will know.
I like to think this is going to be one of the worst times for me and once I find a medication that suits me the pain and stiffness won't be so never ending and there will be days when I feel more fluid and bendy !!
I have been offered a steroid injection in my butt (2.5 dose) that they said would help until my DMARD is sorted (depo injection I think they called it, slow release that should last weeks) but I've been holding off. Maybe you could get one of these ?
Hope your symptoms ease soon and you get on your new DMARD and it kicks the arthritis butt.
When i first got diagnosed i was put on 2 weeks of prednisone (spelling!) and when I stopped taking it it seemed all my joints ached at once and the pain was so intense I don't want that again.
Nurse did say this dose isn't as high as the tablets so this shouldn't happen again, so I'm reconsidering as I've wondering how I'm going to get my children to school .
I thought I'd try and ration the steroids out a bit too as they are pretty heavy duty , im sure I'm probably being a prat 😁
You will find that the doctors will ration your steroids, and limit what you can have so don’t worry unduly about rationing yourself. I had three injections in the first year, and they were lifesavers!
I just called the surgery and the receptionist told me that one of the GPs does steroid injections so I am waiting for him to call me. I'm pretty certain that it wouldn't be done at the rheumatology department here. The 2 weekly blood tests while I was on sulfas. were done at the surgery. I'm also assuming that I don't have to be 'referred' by rheumatology for a steroid injection. My rhuem. nurse is very good but I find the messaging system and lack of communication between GP surgery and rheumatology frustrating.
You said you had pain going up the back of your heel - I have that too, it stretches from the 'rim' of my heel (not so much directly underneath on the pad of the heel) and the centre of my arch, up on either side of the achilles tendon. Isn't that classic PsA? I can't get over how the pain is like clamping and stinging, hard to describe. It really is hideous.
I had a real battle with my GP surgery over Depo-Medrone injections. One doctor did them but when he retired they flatly refused to do them anymore, saying they were secondary care & they weren’t funded to do them. Unfortunately, they are my only treatment at the moment so I have them quarterly. It’s just a pain (literally) having a 60 mile round trip to the hospital. Good luck. Nic xx
For me, yes, I’ve been on all the usual meds but have reacted to them all. I’m lucky because I’ve no active erosion of my joints but now have secondary Sjögren’s syndrome, fibromyalgia & I’m waiting for another back operation in a couple of weeks. I can take liquid morphine for pain & that along with plain old paracetamol & my steroid jabs keep me going. I think the biologics are for worse cases than mine. xx
Yes I get terrible arch pain (same as plantar fasciitis) but one day it's there next day gone. Also get terrible jaw pain, tmi joint problems which affect ear, hands, feet, back, ribs (the list goes on !)
I've been given a broad diagnosis of inflammatory arthritis but I thinks its PsA but I don't have psoriasis. I guess the exact diagnosis is a side issue as alot of the treatments are the same for both.
I'm finding my GP and rhemy dept are out of sync with each other, GP needs to wait for letters from consultants before they would give me blood tests 😒I'm thinking money has alot to do with things! But I can't talk too badly of them as would be lost without them .
I think my rhemy team like to administer things , they are going to teach me how to inject mtx and not my GP plus I'm sure the rhemy nurse said I would fo there steroid injection.
I hope they stop messing you around and you get the depo injection. I would have thought they are quite common things to do as a medical practitioner they need to crqck on and do it !
Everything is quite slow though isn't it, especially when you are in pain . Hope you get it soon x
Hi Liz - yes, my 'journey' sounds identical to yours and yes you are right about the treatment, outcomes and prognosis etc are identical between PsA and RA (also another one I can't remember - on the leaflet I was given).
I get the ear thing too, I find it is worse when it's cold. That feels really stingy too. I find keeping up with Naproxen helps with that
accidentally pressed reply before finishing! I also get top of neck, sacroiliac pain and coccyx although that tends to be in certain positions or activities but it's really arresting and sometimes affects walking. the neck thing was probably one of my earliest pains that got me going to the GP. When it starts I feel fluey, as if I'm coming down with something.
So it sounds like you're not alone! I seem to have exactly the same symtpoms as you.
Hope you don’t mind me butting in. I too have neck and coccyx pain . The coccyx pain like you effected walking sitting and standing from seated position very painful. I was told this is not RA related but I thought it might be because our posture changes 🤷♀️ I had physio for this and it was successful. If it starts to niggle then I know stiffness caused by RA through out my body is the culprit and the exercises really help.
It sounds like a flare to me! Contact your medical team asap. Take photos of the affected joints. Keep a daily record. Ask if you can have steroids to cope while you start your medication asap.
Yes I’m like you. Pain and achy visit various joints at different times my right is worse than my left. I can just be puffy and the joints hot only on the inside . The running pain across your limbs and digits is probably due to compression of the nerves and tendons a build up of synovial fluid in the joints can cause this . It’s all going on internally I’m the same.
Yes in the beginning got all this felt like giving up bloody disease it’s horrible 😫but now 2 yrs later life is good got meds sorted I still get flare up now and again don’t no why so it never leaves you but I try not to let it get to me and keep positive we’re all in the same boat keep chin up stay safe 👋
thank you all for your replies - I had my chest xray last Friday so it shouldn't be long before I get the go ahead. I think the rheum. nurse mentioned steroid injections during our last chat but as the pain was nowhere near as bad as it is now I didn't really consider it. That's changed now though and if it carries on, right foot is constantly bad, then I will ask for it.
Do they inject the foot or is it in the bum cheek as Marionfromhappydays mentioned?
BTW, I wanted to say that sulfas. did actually help with RD symptoms because they got markedly worse when I stopped, but it did unfortunately make me feel really low and headachy and that went away when I stopped.
My experience of steroid shot in the bum is that it usually gets to all the affected areas and although it only lasts for a maximum of 6 weeks it has been a lifesaver at times when things are really bad. I wouldn’t hold off if I was you it will get you over the hump of inflammation you are experiencing. As far as I’m aware it doesn’t have any lasting effects so I would take the shot ASAP and your rheumy team will know whether it’s suitable for you and what dose until they can sort out a new plan of meds. It’s horrible to have the vice like pain I’ve been there and it’s truly terrible so a depo injection should really help. They can inject into certain joints instead of a depo but that usually only helps that specific joint in my experience so I would have the depo any day of the week. I’m sure you could ask any questions you like to allay your fears don’t keep suffering I doubt it will get any better.
I’ve usually had them at rheumatology clinic but that was before Covid I have in the past had one at GP surgery so if you get no joy with rheumatology who generally would be my first point of call then try your GP but they’re a bit reluctant I have found. Our rheumy clinic used to have a day when they did everyone’s injections and if it’s been offered to you recently then hopefully they’ll fit you in. So answer to your question get in touch with rheumy first and ask their advice and see what they can do, failing that have a word with GP and see if they’ll take pity on you it’s not difficult to do only takes a couple of seconds and does hurt either if you have a fleshy bum like me anyway.
Update: going into rheumatology tomorrow at 10! Of course the pain in my foot has died down a bit...🙄 Having said that the nurse said that I couldn't rely on methotrexate to provide any sort of pain relief initially and that steroids was the way to go. It was a different nurse to the one who had originally suggested it.
I wonder if it takes a while to get going. Hope you get more improvement from it.
Not got mine until next week, the wheels turn a bit slowly here 😆
I have got in my.mind I will be dancing out the surgery so I better lower my expectations !
Bridge lift.. squat on to chair ( not touching it) make sure your bottom is pushed right back so the back of the chair brushes your bottom.. was told this how I must sit also. Pelvic tilt back and forwards ( use this all the time helps relief it) pelvic tilt into half squat .. squat on the backwards tilt.kneeling on knees one knee forward lean into kneel lunge tilt pelvis forward and back repeat on the other leg . Child’s pose stretch( like this one) lie on back knees to chest and hug rock side to side .
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