Anyone relate : Hi sorry about the moaning as if we’ve... - NRAS

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Anyone relate

Vonnie10 profile image
63 Replies

Hi sorry about the moaning as if we’ve all got enough to worry about at the minute... but how to people treat osteo in there knees .. I’m on toz for my ra 11 weeks in and I’m not really any better.. I had a rescue steroid injection about three mo this ago...it’s wore of around 4 weeks ago slowly but surely in pain not much stiffness in my hands but pain when I’m rinsing the mop out hoovering just general stuff but feet and ankles are bad but my knee is servers pain I’m taking naproxen dihrocodiene Ice packs for my knee the pain iis disgusting.. close to tears at times... the knee pain is bad worst coming down the stairs .? How do people get there knee treated ..my consultant tells me it osteo..in my knee when I’m on steroids the joints are amazing including the knee but I get horrendous ocd anxiety we’re its feels quite physical as well it’s like a catch 22 my gp gave me beta blocker with no effect then diazepam and lastly lorazepam but I literally had to beg for something ... I felt like I wa sgoing proper loopy .. I’m aware they worry over addiction but it’s catch 22 with me.. aww I hate it all with a passion.. but can’t go on with this pain in my knee and feet.. iv rang the rhem clinic .. I’ve put this of for 2 weeks because I’m terrifed of the side effects of the steroid if anyone got any tips for my knee I would truly appreciate it.. so peed of right now . Thankyou .

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63 Replies
allanah profile image
allanah

I dont know if this us right but personally I'd either chat with my GP to speak to orthopedics for osteoarthritis or your rheumy advice. Yoh may need xrays and scans ?I too have osteo and its so painful and disabling. Heat and heat rubs do comfort me . But arthritis care are a great information site for O/A I found xxx Feel for you xxx

Vonnie10 profile image
Vonnie10 in reply toallanah

Al its driving me nuts I had physio last year from a xray they said its osteo and gave me the usual exercises but am I right in thinking the steroid make osteo worst ? It need somethink they did mention steroid into the joint but its crippling me and the pain is horrendous I'm ringing my gp tomorrow and I've left message at clinic ..dont want to spend xmas im struggling x

allanah profile image
allanah in reply toVonnie10

I have had steroids in my knees , for me it helps the RA inflammation but doesnt help the oa pain. It's a very good idea to talk to the gp about it I think. Unfortunatly they are best to see if they think the pain is inflammatory or osteo, osteo is very hard to actually help the pain go quickly . But try the heat and rubs until you speak to them. Or some folks prefer ice xx take some painkillers and i find sleeping with a pillow or duvet between my knees comforting on those bad night x thinking of you xxx

helixhelix profile image
helixhelix in reply toVonnie10

Are you still doing the exercises? Keeping the muscles around the knees strong does help.

I’ve found steroid injections into the knee have worked. Best thing is to keep talking to your rheumy and GP to emphasise how disabling it is for you.

Vonnie10 profile image
Vonnie10 in reply tohelixhelix

Hel no ive not done the exercises it goes great when the steroid in my.body but once steriod is out then it kicks of double edge sword I'm reluctant to have steriod due to the horrible ocd anxiety which is awful..cant win.thanks its was awhile ago I seen physio well over a year I'd did do exercise but once I had the steroid I was great like I said it kicks of when it's gone out my system.

helixhelix profile image
helixhelix in reply toVonnie10

Maybe try to re-start the exercises, very gently - just a few minutes a day to start with?

And perhaps talk to doctors about am injection into the joint as uses a much smaller dose of steroids than taking them by mouth, or a general injection in the bum I think. Oral pred makes me go loopy, but joint injections are fine (and they are a different type of steroid).

Vonnie10 profile image
Vonnie10 in reply tohelixhelix

Helly yes I've sorted it now thanks x

Neonkittie17 profile image
Neonkittie17

Hi Vonnie sorry to hear this. I’ve got two osteo knees also and they do need replacing so understand. They are deemed medium to severe and severe. Strangely enough the one that hurts isn’t the worse one! Odd huh? It often goes that way, but I haven’t gone for replacements as yet as the pain hasn’t been pushing me to do so. It’s the knees that are my worst problem. I keep as active as I can and loved doing aqua and hydro but that was stopped due to the virus then the pool is being refurbed. Hydro does help. I’ve found that knee steroid injections have helped me and then the surrounding knee tissue is less inflamed and once that happens I can move the joint more. They aren’t really for OA though.

A former GP once prescribed Capsicaim (check spelling!) cream for my knee and it worked. Your rheumy may want to review your pain meds. Hugs to you Vonnie. xx

Neonkittie17 profile image
Neonkittie17 in reply toNeonkittie17

Capsaicin cream. I see you’ve been prescribed some pain relief meds so ylu javr to be careful with adding on anything else without it being approved by your rheumy/doc. x

Pippy25 profile image
Pippy25 in reply toNeonkittie17

I've just ordered some Capsaicin cream after discussion with my GP so hope it will work for my knee.

Neonkittie17 profile image
Neonkittie17 in reply toPippy25

Hope it helps you, Pip. 💗 It worked well for mine (and so did/do some herbal creams and an occasional blast of freeze spray too if I need to walk a bit more anywhere) but what works best for me is the steroid injections to the knee and keeping very strong knee and leg muscles. Falling down the bottom of my bedroom steps didn’t help the knees though, three weeks ago!

Vonnie10 profile image
Vonnie10 in reply toNeonkittie17

Kitty I’m like a crab coming down the stairs sideways doctor asked did I want a rolater no thanks doctor I’m on,y 55

Neonkittie17 profile image
Neonkittie17 in reply toVonnie10

I’m am the same .. one foot/leg after the other! I’ve a recurrent Baker cyst behind my right knee which is way overdue a steroid shot (it’s over a year since) but can’t have one at the mo due to the crisis. I do go sideways coming down stairs, so I’m not facing downwards. especially after my recent fall. Not dodgy knee related ... my foot wasn’t in my shoe properly.

Neonkittie17 profile image
Neonkittie17 in reply toNeonkittie17

I am sure I said in an earlier post that one should get GP advice and prescription for Capsaicin and I didn’t think it was available without a script? I was told that a few years ago. Take care anyone who uses warming creams. Even those simple heat balms are potent.

I saw the recent recommendation for the gel which disperses little droplets of natural oils into your skin etc which sounds more gentle. I’d not do any of these without asking/discussing with the rheumy or doc first. I’m too scared and everything I’ve rubbed on my knees has been with their approval. x

Pippy25 profile image
Pippy25 in reply toNeonkittie17

Thanks NK for the recommendation as I thought I would give it a go. Sadly the steroids don't work for me and that leg brace was an utter waste of resources. So until I can get to see someone again I thought I would give the cream a go. I found hyrdo good but due to the current situation it is not available. I too have a Bakers Cyst in the back of my knee so hobbling and the side step is my way of getting around too.

Neonkittie17 profile image
Neonkittie17 in reply toPippy25

We seem to have to do “the ministry of silly walks” at times to alleviate our knees and legs when walking/doing stairs. 😝 I hope the cream helps but as Vonnie has found out .. no baths or direct heat to be applied close before or after. x

Pippy25 profile image
Pippy25 in reply toNeonkittie17

Thanks NK I will apply with caution.....otherwise I may be doing more than the ministry of silly walks! Take care x

Vonnie10 profile image
Vonnie10 in reply toPippy25

Pippy careful when getting a hot bath or shower read the instruction my knees are on proper fire 🔥 x

Pippy25 profile image
Pippy25 in reply toVonnie10

Thanks Vonnie for letting me know as I never thought about that and don't want my knee to be on fire x

Vonnie10 profile image
Vonnie10 in reply toNeonkittie17

Kit I’m my god I’ve just had a hit bath and my knees are on fire 🔥 just read the leaflet not to get hot baths feel like when you was a kid you would stand in front of them old gas fires

Neonkittie17 profile image
Neonkittie17 in reply toVonnie10

Argh .. yes. I don’t do baths .. can’t sit down in the bath etc but same for showers. Don’t have direct heat on the areas you’ve applied any warming creams to. Which one were you using?

Pippy25 profile image
Pippy25 in reply toVonnie10

I can remember having chilblains as a child and sitting by the fire and they burned, so can't imagine how firey you must have felt having a hot bath. Ouch!

Vonnie10 profile image
Vonnie10 in reply toNeonkittie17

Hi kit I'm ringing my gp and rhem clinic I did have xray a while back they said it was osteo but not much but it's getting worst as time goes by wish they would not think because there xray says not much and instead look.at how much its affecting me daily it's getting worst...I was saying to my other half I need to go swimming to help it unfortunately there closed I was a member of a lovely little gym in a hotel just nice and small but that still closed. X

Niao profile image
Niao in reply toVonnie10

X rays do not also show up damage. I had one on my knee, it showed no remarkable damage, 3 weeks later an MRI showed severe damage! However it's hard to get them to agree to MRI. Gp wasn't allow to refer for MRI. I only was given one on one knee as it had a lot of swelling, my other knee hurts just as much but they wouldn't do that, costs!I was told from that MRI that it was Osteoarthritis, which I have throughout, however now having been diagnosed with RA the Rheumatologist thinks it is the RA?!

Neonkittie17 profile image
Neonkittie17 in reply toNiao

I’ve been with my rheumatology department since 1996. They refuse to do scans unless you are going for an op! The only (isotope bone) scan I had was on my health insurance in 1995 to help diagnose my RA.

Niao profile image
Niao in reply toNeonkittie17

Wow, I should count myself lucky then!

Neonkittie17 profile image
Neonkittie17 in reply toVonnie10

Hi again Vonnie. Hope your rheumy team can help you with a rheumy physio referral. It has been my saviour over the years along with hydrotherapy. I do think your lack of swimming may be making your knee less mobile, just as my lack of hydro and aqua exercise is with mine. Also the change in the weather this time of year to very damp most days is an ouch factor for mine. Mine are ok though at the mo although I fell down the bottom of my bedroom stairs three weeks ago and I’m bruised and sprained all over! Recovering steadily now. I think a rheumy physio could tailor make you a little programme .. that’s what mine did for me. I’ve always had exercise even when I had terrible joint issues as they were gentle ones to start with. There is hope to strengthen your knees even if osteo (I’m proof!)

Hopefully when we can get vaccinated and numbers of cases flatten out etc., and it’s safer next year, we can more confidently resume exercise at pool visits.

The knees need to keep moving so red blood cells carrying the (healing) oxygen go into the surrounding muscle tissues. Low impact exercise increases blood flow, strengthening those muscles surrounding the joints, especially the thighs when you’ve got knee osteo. The more you can strengthen your thigh muscles/supportive muscles then that can alleviate the effort the weakened/worn knee joints have to make.

There are all sorts of weird and (probably not so!) wonderful heat wraps and devices for the knees and I don’t use them myself .. I have a smaller square Microwave heat pad which Velcro wraps round a joint and as that’s as high tech as I have got!

My physio used to massage my knees and surrounding area and above the knee gently and show me how to do so keeping the all important movement and blood flow. I think though if you are dog walking frequently you’re doing quite a lot of movement.

Like myself and no doubt others on here, you’re trying not to go for an op yet. There are other more innovative treatments we can read about such as plasma injections and more scientific things I won’t mention here as not proven for OA to always work, but these aren’t NHS and could be a waste of money and time, and cause more pain. Difficult I know when you’re desperate to get pain relief. Hugs. xx

Vonnie10 profile image
Vonnie10 in reply toNeonkittie17

Kit hi I’ve spoke with both rhem nurse she bringing me in before Xmas... I hope to sort something out anything.. gp told me my knee is badly damage from a old X-ray no one told me... so not happy about that...anyway the dog is old 14 little pug she can’t go far but me I never stop so I’m taking everyone advice doing gentle exercise and trying to rest until I get seen.. just a nightmare for us all.. she asked how I’m going in the tocz on a scale of 1 to 10 I would say 3 maybe 4 ish but not as much stiffness still some mainly just pain when I’m doing things mopping hovering ... this weather plays hell with me like you.. ache in all sorts of places lately.. roll on summer. This knee is hard on me..sorry your hurting how did you manage a fall hope your recovering . Xx

Neonkittie17 profile image
Neonkittie17 in reply toVonnie10

I know it’s hard when you like to have everything spick and span in the house but being in agony doing it all isn’t good. My hubby does a lot at the mo as he’s been homeworking since March so he does the laundry in the morning before he starts work and vacs and washes up and etc but I know your hubby goes into work so he is away from home.

I think you may need to go a bit longer with the Tocz but a 3-4 isn’t good enough for when it’s supposed to be working full strength so let’s hope it starts to work more. However, the knee is most definitely OA and not RA on it’s own, so even if the Tocz gets your inflammation levels down and stops new joint damage and inflammation elsewhere, that old OA damage remains. 😢 I don’t know enough about Tocz tbh. I would think like any RA med we take that you have to give it it’s full 12 weeks to take effect before changing to something else unless you have very adverse allergic reactions to one. I did with Enbrel. Which week is it now. Week 8? Do you feel any improvements to the soft tissue in general and less pain there? I want you to feel better soon. We all do. 💗

Ali_H profile image
Ali_H

Hi Vonnie,I’ve been using Flexiseq with some success, it’s expensive though! So expensive if using all the time that I emailed the Vat office to see if we can get vat relief on it as it’s registered by Nice as a medical device not a medicine, the answer I got back was...

‘Your recent email to HMRC Charities VAT team, case number ****** has been forwarded to our VAT specialists. This is due to the complexity of your enquiry, and although your email is still logged in strict date order it will take longer to reply to you.’

That was the 18th Nov so full price it is for now but maybe worth a try to see if it will ease things. You can get some info here....

versusarthritis.org/about-a...

All the best

Ali

Vonnie10 profile image
Vonnie10 in reply toAli_H

Thankyou

sylvi profile image
sylvi

I use the naproxen when it gets really bad with the pain. You can be refered to the hospital for your knee and ask your gp to do it for you.xxxx

Vonnie10 profile image
Vonnie10 in reply tosylvi

Thanks sylvia isnt it nightmare people dont get it..feel like I'm so boring talking about it hate it. X

oldtimer profile image
oldtimer

I would push for a referral to orthopaedic surgeon specialising in knees. If it's causing that amount of disability you might need a knee replacement? My sister has had both hers done with good results.

cathie profile image
cathie in reply tooldtimer

Exactly

Vonnie10 profile image
Vonnie10 in reply tooldtimer

Thanks .I cant fully bend it it goes so tight and last night the pain feels like it going in my shin bone anyway I've rang both dr and clinic.

Vonnie10 profile image
Vonnie10 in reply tooldtimer

Ot gp says lets get a steroid in the joint but he agrees my knee is badly damaged and I need a new one from a old X-ray he had but no one informed me about this . So not happy

cathie profile image
cathie

I’d get a rheumatology appointment, ask fir X-ray to see the state of your knees. If you’re in the U.K. it might be worth considering a knee replacement. Mine were badly eroded and after 2 successful replacements and some physio I’m much better.

Neonkittie17 profile image
Neonkittie17 in reply tocathie

You give great hope to some of us who are worried and reluctant to have the ops. Glad yours have been so successful. 💗

Kags1068 profile image
Kags1068 in reply toNeonkittie17

Hi NK

I hope this can give you a bit more hope too! I had both knees replaced 15 years ago when I was 36. I put it off as long as I could by have 3 monthly steroid injections into them which helped. Eventually though, it had to be done as they were both end stage damaged and very unstable (you could wiggle them left and right - if you get what I mean). All these years later, they are still absolutely fine. I know they will have to be re-done at some point, but not going to think about that yet as so far, so good! 😊

Neonkittie17 profile image
Neonkittie17 in reply toKags1068

I am glad you’ve had such success. I think when I feel my knees won’t take me where I want and hurt all the time I’ll go there too. At the moment, apart from a few injuries in a fall in my house (not my knees that did this .. my foot wasn’t in my shoe properly) my knees are doing well with one steroid injection needed every 9-12 months (as well as my biologic/meds.) x

Kags1068 profile image
Kags1068 in reply toNeonkittie17

Thanks! I think that's a very sensible way to approach it, and I did exactly the same. You will know when the time is right for you. I hope they stay manageable for a while longer yet! Never a good idea to rush into an op, I think. I'm sorry you've had such a nasty fall. I hope you get over your injuries very soon xx😊

Vonnie10 profile image
Vonnie10 in reply tocathie

Like kit said this is amazing for you and I hope to be in your situation sooner rather than later x

Vonnie10 profile image
Vonnie10

AJ I know I should rest but how hard is it to not do things but I'm going to try cant stand the pain I dont have crutches

Vonnie10 profile image
Vonnie10

Thanks ajay ..us woman find it hard not to do well I do waiting call.back fromthe gp

Vonnie10 profile image
Vonnie10

Little update dr rang from my xray a while ago he said its badly damaged..no one told me ? Anyway he said try the steroid into the knee and drain some of the debris..if that's works I'm ok but if not will need referring to ortho ..Joy's of arthritis. He sending me some capsuim cream or what ever it's called.. and clinic just rang they're bringing me in for a steroid into my knee joint..so thankfully thi gs are been sorted and she hope before xmas . Thankyou everyone I would be lost without this place..and the lovely people on it.. xx

in reply toVonnie10

I have bone on bone in both my knees. Pain and heat most days but I have to degree got used to it. I have a cane for the days my knees are weaker (55yrs old) and co codamol is the only drug for me that takes the pain down. Steroids do nothing for my knees or so it seems. Biofreeze gel and TENS machine are back ups for bad days x

Neonkittie17 profile image
Neonkittie17 in reply to

I was told by my GP I couldn’t have Cocodamol anymore years ago as it was being discontinued! Seems not. It was the only oral pain med that worked for me. I’m on Fentanyl patches now.

in reply toNeonkittie17

Oh I get the every month been the only thing that seems to work for me on pain.

Neonkittie17 profile image
Neonkittie17 in reply to

I’m glad you can get relief from it, I was told the GPs no longer wanted to stock it as it as going out of production so no point in me taking it. That was 2015.

Vonnie10 profile image
Vonnie10 in reply to

Hi Dee I feel like I’m used to the pain in a weird way don’t think my hands could handle a cain it’s so sad isn’t it . Worked hard all your life and then this it’s not fair x

Neonkittie17 profile image
Neonkittie17 in reply toVonnie10

I think when you’ve tried all other alternatives and if you are still in agony, darling, then going to talk to the orthopaedic surgeon would be a good thing. I hope and pray you get relief for Christmas and the cold spell. Don’t like to think of you in pain. 😢💗 If my steroid injection and pain relief no longer helps me enough I will have my knee done. I’ve always told them that. xx

Vonnie10 profile image
Vonnie10

Ah I asked about some crutches gp says a rolater.. I’m nit using one of them I would be Heart broken but something seems it’s just me getting worst as time goes by I’m only 55 just .but will try and take your advice and stay put can imagine how hard it’s going to be . Thanks aj

Vonnie10 profile image
Vonnie10

Kit I've got appointment on the 17th at clinic I'm.hoping and preying a steroid in the joints helps..I'm.in bad pain..will.have to see what they say..bit wary of steriod send me loopy ocd anxiety goes through the roof catch 22 I feel amazing on them but its not right really its just masking it all..I've told.my gp if I get anxiety I am.not battling him for somethink but really my consultant should be sorting it.. thanks.kit its huge help you've been a great support . Xx

Neonkittie17 profile image
Neonkittie17 in reply toVonnie10

I’ve never had a mood altering reaction to a joint injection of steroid before. However, the joint steroids can make you feel “euphoric” as the injection clinic docs have said to me several times before, so it would follow you’d go from feeling high to low. For me it was a more gentle feeling of well being after the knee shot. Everyone is different and you’ve obviously reacted in a way that was much more intense with anxiety and lasted longer than a few days.

Glad you’ve got in with a fast appointment. If you are given a knee injection you will always benefit from immobilising the joint for 24 hours after. Legs up and resting. Don’t be tempted to getup and start doing things you don’t need to as keeping the joint still helps the injection work better. Then I have always been advised to not do much for the second day after. xx

Vonnie10 profile image
Vonnie10 in reply toNeonkittie17

Kit I go euphoric in a happy way but ocd and anxiety is unmanageable ott then the low bit... but I will get my gp to prescribe lorazepam that’s the only thing that works to take the edge of very tight with prescribing them 7 days at a time there terrifed of addiction... I understand this but it’s needed my clinic should really be sorting this out they drive me 😡

Neonkittie17 profile image
Neonkittie17 in reply toVonnie10

Hi Vonnie, If you know the steroid will make you like this then it is a good idea to speak to the doc and say you can’t get in that state of anxiety again. x

Vonnie10 profile image
Vonnie10 in reply toNeonkittie17

Bought a foot stool so I can keep it straight as bending is worst x

Neonkittie17 profile image
Neonkittie17 in reply toVonnie10

Sounds like a good idea. Hope it brings relief and comfort. 💗 Won’t be long till your appointment now, Vonnie. Hang in there. Try distract yourself with TV/DVDs/mags or anything you can, and come here and have a chat if it’s getting you down again. We’ve mostly all been there at some point. xx

cathie profile image
cathie

Don’t delay knee ops too long if that’s what you need. I did and lost quite a bit of general mobility. My knees are much better now

Vonnie10 profile image
Vonnie10 in reply tocathie

Hi catch I won’t but gp says because I’m under the joint clinic it’s upto them I think or am I wrong ? X

cathie profile image
cathie in reply toVonnie10

Yes it’s up to Orthopedics to decide about whether the replacement can help you

Vonnie10 profile image
Vonnie10 in reply tocathie

Cathie had the steroid injection rested it for 48 hours like they said thought oh great it’s working that steroid injection spoke to soon went shopping only Tesco mine not A huge Tesco it’s a B store it was torture.. it feels like someone is twisting it inside...so will be ringing my gp after Boxing Day for a referral.. to orthopaedics I can’t deal with living in bloody pain .. and neon kitten if your reading that’s I did get back to your post...earth to Vonnie.. nanaoo.. nanaoo .. mork call Mindy...it’s just as bad even worst I would say now I spoke to soon.. drains the life out of me this arthritis..merry Christmas folks wishing you all apian free one mostly . 😘

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