knee Pain help please

[girli1111]

I have RA (many years ) and now likely OA also in knees. Can anyone give me some advice on how to help my poor knees! Rheumatology have frankly been quite dismissive, as the nurse doesn’t think my knee pain is related to the RA, so won’t consider a change of meds. What have you done that’s helped your legs and knees please. I’m at my wits end with pain. I need to work and it’s becoming unmanageable. I’m utterly exhausted. (I went part time years ago but I’m really struggling)

[Runrig01]

I do empathise, I injured my knee last summer, after a period of it buckling on me. My GP dismissed it saying it was coming from my back, I have AS. Fell & gashed my leg open, which took 10 weeks to heal, sent to A&E for CT of spine, in case I injured it in the fall, and was still dismissed when I mentioned my knee. After a further A&E visit, my mri showed my knee cap partially dislocated, severe OA behind the knee cap on the femeropatellar joint, as well as bursitis and tendonitis. My rheumatologist referred me for surgery, so wouldn’t do a steroid injection, as it would impact possible surgery. Seen orthopaedics who don’t want to do anything yet, due to age (58) and another health condition. So I asked my gp to refer me for physio, which I started 7 months after the injury. I’ve had no change in meds in all that time, except a one off prescription for oramorph.

Will you rheumatologist not consider a steroid injection? I purchased some bamboo knee supports, that you can wear in bed, and found they eased the pain, and allowed me to get back to sleep. Ice packs also helped ease the pain. The delay in treatment seems to have resulted in my patella tendon shortening or stiffening, as I cannot lie flat now, or the tendon goes into a spasm. My physio says he’s never seen that before. I do have calcified deposits throughout the tendon, due to my ankylosing spondylitis. Try and keep it on high elevation, above the level of your hip, to reduce swelling. Are you taking an nsaid?, if not that may help, unless you can’t due to other meds or conditions. Sorry I can’t be more help, but hope you get on top of the pain soon 🤗

[girli1111 in reply to Runrig01]

Thank you for your reply. Interestingly this all started over three years ago - a couple of weeks after I too had an injury to my right knee …. I dismissed the injury at the time as the horrendous pain in the moment subsided very quickly, but the problem does seem to have started there. Both my knees (and legs) seem to be affected now, but oddly it’s not so bad all of the time (which is why I feel that the RA IS ALSO A FActor). Xray about a year ago showed ‘moderate osteoarthritis’ in my right knee. I’m not meant to take nsaids although I have taken ibuprofen occasionally and also cocodomol out of necessity. I think the tendons in the back of my legs have become very tight, but I’m so unsure whether stretching/exercising etc is doing more harm than good. I feel that I need to strengthen my legs but it feels like a vicious circle right now. Thanks for your advice. I will look at the bamboo supports.

[Runrig01 in reply to girli1111]

If you can afford it, it may be worth looking at a one off private physio appointment. That’s what I did, they can assess and advise on exercises to do, that won’t aggravate things. I’m not supposed to use nsaids either, due to having a stroke at 52, and recent bad bouts of rectal bleeding, but when desperate have taken after having food, I do find Voltarol gel helpful. The bamboo supports are just knee sleeves, I’ve purchased many over the years, but nothing comes close to these ones. I also have the elbow supports and compression gloves. Mine are from a company called OneCompress, they are based in USA, postage is included in the cost, and they have excellent customer service. A good way to suss if it’s inflammatory or mechanical pain, is if the pain is worse at rest, and better on moving, it’s inflammatory. If it’s the opposite, it’s mechanical. Hope it improves soon.

[girli1111 in reply to Runrig01]

Thank you. Private physio sounds like a good plan.

[vonniesims]

If you could see a physio they could assess and give you exercises to strengthen the muscles around your knees . Before my knee replacement my consultant recommended cycling and cross trainer. Hope it may help

[girli1111 in reply to vonniesims]

Thank you. I definitely need to strengthen my leg muscles somehow

[Madmusiclover]

I too have a long history of knee pain and knee locking. After going round and round the houses for 6 plus years, including ineffective physio (made it worse) I had an exploratory op which as well as removing cartilage which was making my knee lock, showed I need new knee on account of stage 4 kneecap OA degeneration. New kneecap alone contraindicated with RA. I was told nothing on X-rays and MRIs showed this. Surgeon quite surprised! Have you seen your GP to get Xray? You can find a post from me about this on here. Injections helped along the way.

[girli1111 in reply to Madmusiclover]

Yes I had an xray on just the right knee about a year ago, and it showed ‘moderate osteoarthritis ‘ but that hasn’t resulted in any treatment. What do you mean when you say new kneecap contraindicated with RA?

[Madmusiclover in reply to girli1111]

Sadly you have to keep rattling the cages. I just kept going not taking no for an answer. You could ask for another X-ray. Well I’m not a medic but I have been told by consultant that if you have RA you cannot be given just a new knee cap. The whole knee has to be replaced. As it happens there is some other cartilage degeneration in knee. Not enough in itself to warrant a new knee. If I didn’t have RA they could possibly just replace kneecap.

[KittyJ]

A change of RA meds won’t help OA. I’d self refer for physio and if there’s a long waiting list then I’d find a private one for some advice.

[girli1111 in reply to KittyJ]

I know that, but I believe the effect on uncontrolled RA on top of osteo is causing me pain. Both knees currently bad, but also elbows, wrists and thumb joints, plus the terminal fatigue… this is why I believe the RA is not under control

[KittyJ in reply to girli1111]

I’m only responding to what you said and you didn’t mention other joints just knee pain.

[girli1111 in reply to KittyJ]

I apologise if my response came across as rude in any way, that absolutely wasn’t my intention. I wasn’t seeking advice about my meds however, on this occasion, I was asking what others do to relieve knee pain. I agree that physio might need to be looked into, thank you

[AgedCrone]

Has anyone mentioned Osteoarthritis..? That is often the culprit with Knees, (and hips.)So your rheumy nurse could be right.

I find knee supports very helpful…but do ask for a referral to orthopaedics who will advise you if they could help you.

[Biker52]

I feel for you!

I had a check up with the rheumatologist at the end of January and mentioned an ache in my hip….I had a knee replacement last July. Blood tests were normal so I was sent for an X-ray .

Turns out I have severe arthritis in both hips and I am hoping for the first hip to be replaced in a couple of weeks.🤞🤞

The pain has worsened and I cannot get around without crutches now and my knee is hurting which is due to the arthritic hip!

I think you need to ask for X-rays to check what is actually happening. If I hadn’t mentioned the niggly ache in my hip I wouldn’t be so far down the route of sorting out the issue.

I hope that you get sorted as pain has such an impact on how you feel mentally and physically.

[Shep22]

Keep at rumatologist Do you have a next appointment with them

As above

A steroid injection

And input from rumatologist

And ot

They should give you this

And appropriate exercise etc

If available

Hydrotherapy helps a lot as well

Again referal helps as demand for this

I'd go to gp as well to email rumatologist for to be seen by him

I've had it out with nurse as well

And when seen the nurse was wrong again I tend to dismiss the nurse now and avoid

Hope yiu get appropriate diagnosis and treatment soon

[janmary]

I found the bamboo knee sleeves from One Compress extremely helpful- comfortable enough to wear at night if necessary and giving some support and a surprising amount of pain relief

[girli1111 in reply to janmary]

Thank you. Several people have mentioned these so I will look into getting some.

[Runrig01]

The pain you get from RA is very different to the pain from OA. With RA your pain will be worse with rest, and better with movement. With OA it’s the opposite, better with rest and worse with movement. If your pain is better on movement, use that argument, to get them to rule out active RA as the culprit, by checking inflammatory markers. Also as RA is a systemic illness, it’s often bilateral, whereas OA can affect just one side. It shouldn’t be the case, but we often have to keep fighting 🤗

[girli1111 in reply to Runrig01]

Interesting. My knee joints are definitely stiffer when I rest and when I first get up, but the pain is all the time.

[Ritaritis]

Hi, I have knee pain and have pain told most of it is arthritis. The rest is due to cat claws getting sunk into me, honestly, feline juvenile deliquent. I take painkillers, heat packs and use wheat packs. Works for me. Good luck.🐈

[greynot]

If the only reason for not having a steroid injection was because you might be having a knee replacement , and you've now been told you're too young for replacement, you could rattle bars for the injection.

I had 4 or 5 over the years, before finally getting a new knee. They won't do the op within 3 - 6 months of the injection round here.

[Artfanatic]

So sorry to hear about you're knee pain Girli1111. I have also had RA for 36years & found out I had Osteoarthritis in knees & hips about 4yrs ago. Oh joy (NOT!) As you say there is no exact treatment medication wise for Osteoarthritis & the RA drugs dont help this. So its painkillers & gels (I found Deep Freeze cold gel & sprays helped me, but may not help everyone). Also putting youre leg up to rest & do you're jobs or housework in phases & resting inbetween, as we do for RA. Otherwise I'm afraid its surgery & replacement after length of time as the cartilage will not be replaced or regrow & if its bone on bone, as it was in my case, I had to have a knee replacement operation. I had that at end January & I'm walking normally now. Theres still a bit of discomfort & pain if I overdo it as its still fairly early days. But it's a fantastic improvement & nothing like the pain I had before & its getting better every day & will be back to normal & no pain soon. I would definitely recommend having a replacement if & when you're offered it. Nobody wants to go through the surgery & recovery but it's well worth it for the end result. Good luck & I hope you find something to use that helps you're pain.

[girli1111 in reply to Artfanatic]

Thank you

[Seatgeorge]

When I was first diagnosed with RA my knees cane up like footballs consultant told me it was RA and the body's immune system was attacking the joints,she drained the fluid from both knees stuck on mtx and sorted me out,she is still.my consultant thank good Ness and my knees and hands don't really cause to many problems, so whoever says RA isn't the cause is full of twaddle good luck.

[1330-30]

voltarol gel is excellent. Good luck

[Ferret18]

So sorry you’re going through this. It’s what is happening with me too. RA for 6 years and now OA in left knee. Also started in new RA drug (Imraldi) 3 months ago and it’s not “kicked in” yet so RA playing up too

I live in France so things a bit different here. I had my knee drained twice and a steroid injection. Then had Hyalauric acid (not sure on spelling!) injected in April - just waiting to see what happens now.

The pain is totally exhausting isn’t it.

Can occupational health do anything to support? Physio? Pain management - I’m joining a group here for that.

Good luck with it and take care

[girli1111 in reply to Ferret18]

thank you.

[Hisue]

Glucosamine & Chondrotin supplement helps me.

[Green230461]

My sister uses voltarol gel and says that helps with pain levels. She has a sleep pillow for her knees too

[OKShakespeare]

I had PRP in my osteo left knee about 6 weeks ago. Pain down 90%. I am going to have my right knee done on Thursday. According to dr. this should last about a year and is not as dangerous to the knee as steroids. I had steroids in my left knee about 6 months ago. It lasted about 4 months. Only issue and it is a big one-there is no insurance coverage. In the US we have to pay the bill. For me it is $650 each knee. But what can I do. Without treatment I am nearly an invalid and as you know if you keep trying to have a somewhat normal life it is so tiring.

[Jollyjill in reply to OKShakespeare]

I also have osteoarthritis in both knees - bone on bone. Must take Diclofenac oral to function which relieves the pain but I still have difficulty standing after sitting and doing stairs. I recently ended a course of Supartz injections which didn’t help at all. My Orthopedist told me years ago (when he was giving me corticosteroid injections) that I would eventually have to have knee replacement surgery but I’m still trying to avoid going that route. So I’m considering physical therapy & muscle strengthening exercises. I’ve also read about plasma replacement therapy (PRP). Would appreciate receiving any ideas/suggestions! Forgot to mention that I’m in remission from RA but still taking 15mg/week of MTX. Otherwise I’m a fit & active 80-year old!

[girli1111 in reply to OKShakespeare]

What is PRP please?

[OKShakespeare in reply to girli1111]

Platelet rich Plasma. Had it done today on one knee and a month ago in the other.

[Gitaga]

HiI share your agony.

It's so delibitating and annoying.

I use a simple crepe bandage. I wrap it around my knees to the desired compression. I find it more comforting and pain relieving that knee guards (I have tried those as well).

Occasionally when it's really bad I take a prednisone in the morning just for 7 days. I honestly find that this works the best for me. I cannot take anti inflammatory medication because I have CKD.

I hope you find something to relieve you. 🤞

[MerielPB]

I find Flexiseq gel quite useful on my knees

[Lhasalover]

Hi, sorry things are proving so challenging. Echo the idea about physio building up muscle strength around the knee. Have you also considered heat and infra red therapy ? If you go to the Gemporia website or ring Gemporia directly they do one for the knee. I know this because my husband has an autoimmune condition and has one of their products specifically for the knee. The best way I can explain it to someone is it is like a sleeve that sits around the tissue and the ultra red heat helps repair the damaged tissue. It costs about £100 to £130. Hope this proves helpful, all the best x

[girli1111 in reply to Lhasalover]

Thank you. I hadn’t considered the therapies you mention so will look into those.

[rosieglows]

I feel your pain, literally! As I have the exact same problem. Rheumatologist says it’s not RA - possibly OA. GP says the OA isn’t bad enough to have caused such pain. Rheumatologist has referred me to MSK, who have said the first thing to try is physiotherapy - and I am now on (a long) waiting list. However why I am replying is to tell you that Nuffield Health are running a 12 week joint pain physiotherapy course for free, which may be of interest if you have one close to you? I have just signed up and been offered a few different slots. It’s twice a week. If it’s helpful I may join the gym as they have physios on site.

My GP gave me strong Co-codamol and naproxen that took the edge off and I was fortunate to have a short course of steroids for an unrelated issue which of course helped enormously. I have also started swimming to improve muscle tone.

I do hope you find some relief. It is hugely debilitating, especially when you are working and so frustrating when no one seems to recognise or acknowledge the high level of pain that you are experiencing.

[rosieglows in reply to rosieglows]

nuffieldhealth.com/about-us...

[girli1111 in reply to rosieglows]

Thanks, I did look into this before but were daytime sessions when I would be working so unfortunately unsuitable