Starting out

sam496

Hello everyone,

I'm new here and although seeing the MSK at my doctors surgery, who told me it was arthritis and has booked ,me in for X-rays on both knees and hips between xmas and the new year so expect a diagnosis early next year. quite disappointed that she didn't even want to look at it and told me she could refer me to orthopaedics for a new knee, I felt this was maybe a little premature.

Currently suffering with a lot of pain from, initially, my right knee, which spread within a couple of days to both knees both. hips, ankles, wrists, thumbs and fingers, one elbow and both shoulders, not sure why that is at all.

I had a camera put in my right knee probably 30 years ago, the consultant at the time said I had scared cruciate ligaments, and his best advice was to keep moving. Apart from the odd grumble now and again its been OK ish until recently.

I am slightly overweight BMI around 27-28, and currently trying to lose more, pretty active for my age.

Any tips appreciated

Thanks

Sam

noddingtonpete

Hello @sam496 and welcome to the Community.

Whilst you are waiting for your x-rays take a look a the following from our website which might help you.

https://www.versusarthritis.org/about-arthritis/conditions/knee-pain/

and

https://www.versusarthritis.org/news/2021/november/ways-to-help-manage-hip-pain/

Hope it is of some use.

Best wishes

Peter

Naomi33

Hello @sam496

I like you have pain which started off by moving around joints this time last year I was bed bound but now medicated whilst not 100% and flare ups do occur fighting my condition.

Anyway I was diagnosed with Palindromic Rheumatoid Arthritis. I have attached a link for you to view .........

https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

I have attended pain management courses over the year which really helped me so again attached links.....

https://www.versusarthritis.org/news/2020/january/moving-more-with-the-escape-pain-programme/

https://www.nuffieldhealth.com/about-us/our-impact/healthy-life/joint-pain-programme

The above may or may not be helpful but worth a look.

Take care @Naomi33

Baloo

@sam496 I get by on painkillers, but do have so many down sides I lose track. Exaggerating slightly, on painkillers there is no joint pain and I feel stronger, but . . I still lose sleep or hit times I don't want to move. I can still become injured (inflamed) if I overdo something. The joints are so fragile, like they won't cope with too much gym, and then I need a stronger painkiller for a day or two. Worst thing for me is the arthritis is still incredibly draining. I nod off during the day or I hit intense cold ache in the evening. Even so, on balance if painkillers get me so I can climb stairs, or get out of chair, or lift my gym bag. I'm happy.

sam496

Thanks for the replies, I have another appointment with MSK tomorrow. one of the things I am having difficulty with is relating how knee pain affects other joints. I expected and accepted that my knee could affect my hip. but can't relate that to the flare up pain and stiffness in my fingers, thumbs and wrists. also have a lot of problems with my shoulder, I can feel something there all the times would not say its painful, uncomfortable would better describe it.

I understand there is quiet a big disconnect between all the medical services regarding arthritis care generally.

I'll see what tomorrow brings .....

have a good day everyone.

sam496

@Naomi33 thanks for the links I'll investigate further in the new year.

sam496

sam496

I went to see another MSK at my doctors surgery on Monday. outcome of that was not good, left shoulder has a problem, arthritis in both wrists left worse, golfers elbow right hand side, At least this one actually looked at the problems.

outcome shoulder is to do exercises as given on this website for the next three months and if its no better they will consider an injection into the joint, wrists etc, keep doing the exercises and taking NSAID's. she asked if any history of RA in the family, I've no idea.Do I have any psoriasis which I have a history of. still could not get an answer to what has caused all these problems to kick off over a couple of weeks?

Spent the rest of the day with my grandchildren which included curling, and walk round Wisley gardens for the glow, most of the walk was accompianed with quite a bit of hip pain, stopped and sat down for a few minutes for the knee pain to replace the hips. was glad to get home !

Have been up since 5am with all over pains, just going to have a bite to eat so I can take my tablets and some painkillers.

have a good day all

@sam496

jamieA

Hi @sam496

I wouldn't want to worry you but your story resonates with me. I have psoriasis. Just over 3 years ago my left knee started to swell. Within 6 weeks my hands, wrists, shoulders and right hip had all become extremely sore. By luck the head of 2nd line A&E saw me and as he'd previously been a professor of rheumatology he asked if I had psoriasis and diagnosed psoriatic arthritis. He got me a quick appointment with rheumatology and it was confirmed. I'd never heard of PsA even though I had had psoriasis for 50 years.

I have no medical background and I'm not saying for a minute you have PsA but I do think you need be checked out for it if you have psoriasis and are suffering multiple joints pain.

sam496

Thanks @jamieA

Some very good points there. Recently I had a flare up of psoriasis which took some time to clear up (still have a small patch) and all this started with my right knee followed in quite quick order with the other joints.

I have x rays on hips and knees next week, which I am fully expecting "some minor arthritic changes" diagnosis "keep taking the Naproxen"....

I may ask my doctor for a referral to rheumatology, as at the moment the flare up in multiple joints is limiting me in so many different ways.

@sam496

jamieA

Hi @sam496

I would ensure that you make the doctor you see is aware that you have psoriasis. From my experience I wouldn't assume they know or have read your medical history. I was (and still am) grateful to the A&E professor who only saw me as his junior doctors hadn't been successful in draining my knee. On the second occasion he was draining my knee I was lying on the treatment couch and he suddenly appeared in my vision and asked if by any chance I had psoriasis. I was completely bewildered as to why he would ask until he explained his rheumatology connection and the fact that there are no specific tests that absolutely prove PsA.

My knee swelling had not initially had me worried as I'd had the meniscus removed after a football injury some 30 years previously. I was told that it's not unusual for inflammatory arthritis to initially appear in previously damaged joints.

sam496

Hi @jamieA,

This all kicked off with a knee injury about 60 years ago knee the size of a football, as could stand and walk that was good enough, followed up by a clean out 30 years ago. grumbles occasionally but this time the pain and stiffness is too much.

Just had another sleepless night, mind you yesterday I was in pain all day all over. using volterol. paracetamol. and ibuprofen, to take the edge off, also Naproxen.

I'm going to apply to see my doctor (online and pretty useless service) I will be asking how they expect me to do the exercises recommended when in so much pain?

oh well off to boots to stock up on painkillers etc for the next few days, whole doc situation is not helped by allocated to two different doctors in the last month so, one left the surgery and one is retiring. never seen either of the replacements.

have a good Xmas... based on the last few days mine is going to be painful..

stickywicket

Hi @sam496 ,

I'm sorry, but not surprised, you're in so mucH pain. You may well have OA from the previous injury but, sadly, that doesn't exempt us from acquiring an inflammatory form of arthritiß too. As @Jamie has said, the psoriasis is a danger sign. Not everyone with psoriasis will get psoriatic arthritis but it does need checking out asp.

Meànwhile, pleàse don't mix ibuprofen and naproxen. Both are NSAIDS and you could easily overdose. Ask whatever pharmacg is open for advice.

sam496

hi @stickywicket,

sorry but I am using paracetamol as pain killer and two 500mg doses of Naproxen daily, my daily routine currently is stay in bed as long as possible until pains forces me to get up usually 4.30 to 6.30 am.

immediately take 2 500mg paracetamol extra with caffeine boots own brand.

10 mins later use Voltarol 2.32% on hands wrists and knee.

30 to 45 mins later after food ,I take first dose of naproxen.

then try to go through day with Paracetamol and Voltarol as little as possible normally once, late lunch or preferably late afternoon.

Naproxen after dinner and third dose of paracetamol between then and bedtime to allow me to get some sleep.

a couple of days ago I used my NHS app to look for the results of a blood test which was a repeat for one I'd had previously which showed I was showing signs of being anemic, second blood test was fine, But while I was there I looked at previous appointments and both The MSK people I had seen had listed my joint pain, swelling etc as being "minor" who knows how bad it has to get before being classed as needing attention? I think I may request a talk with a GP with a view to being referred to Rheumatology.

Have a good day

@sam496

Baloo

@sam496 minor might mean a long way to go before major. I had my knees x-rayed before starting physio for my knees and the physio confirmed only minor deterioration I should be ok doing the knee physio. To be honest though I haven't been able to follow through enough. My knees became looser but never quite made it onto my road bicycle, I only made it onto the gym bicycle, which doesn't need as much balance and leaves me feeling stiff.

111 told me to get my first paracetamol dose in early. It takes up to an hour to act which maybe explains why. After that I found myself skipping paracetamol doses. I didn't worry too much about it until I found I was stronger on painkillers than without, and decided to take the full dose all day. On balance I feel more comfortable that way and less comfortable if I have been skipping doses.

swimmer60

@sam496

I was taking buckets of pain killers before my op. They made me very constipated, just warning you! Of course doctors didn't bother telling me1

sam496

@swimmer60 yes gave me the possible side effects, but I will take the edge off with paracetamol during the day and use something stronger in the evenings. Thanks

Latest to this as of today (weds 10th Jan 2024

Really been annoyed at lack of any help from GP, I put another request see GP, Ive been in quite bad pain for 2 months or more, have now had knee and hip X-rays witch show major wear in my knee joints and only early stage in my hips but not bad enough for orthopaedics to look, my original knee problem was ligament damage and up until few months ago My daily 6 KM walk in under an hour was no problem. I was told that the walking was wrong exercise for knee problem and I needed to do more strength exercises, given that there is very little sign of wear and tear in my knees, I have to say that my exercise of walking has done them no harm!

this morning after yet another night of less than 3 hours sleep (wrists, thumbs, fingers and shoulder pain) I decided to call 111 after explaining to them all my symptoms they made me an appointment at the urgent care centre within an hour, it actually took a couple of hours, but what a difference, A thorough exam of all joints and general questions about my problems, he was not to happy that I'd not been sent for any blood tests and also said an X-ray was not helpful for looking at the total knee package .

He has written to my GP telling them they should do some blood tests and also strongly suggest they refer me to rheumatology. especially as I quite recently had a quite a flare up of psoriasis and possible link between the two conditions (both inflammatory).

I'm hoping that the GP will c change my telephone referral next week and take the advice of the Doctor for the hospital. Ive also been prescribed with co codamol * spelling ? for taking at night in the hope that I can get some sleep.

I'll update later when I know more...

jamieA

Hi @sam496

I really feel for you. Not getting the medical support you need is exhausting in itself never mind having a condition which causes pain and loss of sleep. I had a similar situation with my GP practice and my first rheumatologist. I'd never been treated for a chronic illness previously so I assumed that after diagnosis when the various medical services kicked in they would be in sync, have a plan and ensure everyone was on board. I was sadly mistaken and quickly realised that I needed to be more assertive in my dealings with medics. I know it's not an option for many but I've changed my GP practice and my rheumatologist. My present GP is far more proactive as is my present rheumatologist and I'm far more confident they have my best interests at heart. In the past I've been taken aback by the lack of communication between GP, rheumatology, orthopaedics and (in my case) cardiology - they quite frankly don't speak to each other. I would chase your GP to confirm that the correspondence from the urgent care centre has been received and read before your appointment with your GP. I'd write down all the questions you need answers to and write down the responses. If you do get a face to face appointment consider taking someone with you.

I hope you get the treatment you need soon.

Tiggy03

Hope you get the help you need. I, m waiting for the results of a kidney and bladder scan. I contacted surgery only to be told they don, t get the results the Doctor at the hospital who asked for it to be done gets them. My appointment at her clinic isn't until May so if I Don, t hear from her soon I will have to contact her secretary. Such a pain.

sam496

well I was awake most of last night (Friday) with thumb pain, left hand worse but right not much better. as I've always had quite skinny hands I would say my knuckles are quite prominent but I can't see them anymore dues to swelling in between them, best described as a small sack. of fluid, can be moved and squashed with no real pain.

last I heard from GP was keep exercising, when nearly every joint in your body hurts when I move, I'm tending to find my most comfortable position and not move, I know I have t. o but every step. is more than I can bear.

I am more than annoyed at the GP, I've not seen him at all and attempted to get an appointment weeks and weeks ago, according to. the experts x-rays can show up wear and tear the joint usually meaning Osteoarthritis. when mine shown very little wear why did they not think what is it, given that I had told them its very painful and clicks on every step.

system at my GP is to fill in an online form, and submit it they then contact you for an appointment, prescription, blood test etc. as I had a MSK specialist glance at me twice (sorry look is not what they did. having then submitted another application to see a doctor I was offered a potential phone call some 13-14 days letter. after a few days I called 111 as everything was getting worse. I got an appointment within a couple of hours, he has written to my GP suggesting several things, he told me to submit the online form thing again and to tell them to read the letter from the hospital doctor, which I did on Thursday evening, I got the automatic reply that I would be contacted by Friday afternoon. no response, you can contact them to say no response on the auto notifying text, which I did (it does say you will be called back in a few minutes) ..........................still waiting, do I go back the 111 route? wait until they open at 8.30 on Monday and wait for the usual 45 mins to be told that they have no appointments available until November 2024? Can I complain or does that make it worse for me?

So sorry for the rant but it's 2 am and my shoulders arms hurt so much despite the co codamol I took a couple of hours ago. Looks like a long night of Volterol and rubbish tv..

hope you are all pain free and sleeping by now...

@sam496

Denis68

Hi @sam496 it sounds like you've had a rough time with your GP surgery, I haven't rated mine that highly but perhaps they're not so bad after all.

In my experience the outcome of complaints can be down to how they are made. i.e an angry rant may generate a defensive response with little notice taken of the content. A polite message to the practice manager (if there is one) recognising the general pressure on the NHS but questioning the speed and robustness of your treatment could help.

sam496

latest update Friday. 19 Jan 2024 03.45 am.

well its always nice to report good progress possibly with a diagnosis ?

Sorry to disappoint but that's not going to happen this morning as not much has changed.

Despite communication between Urgent care doctor and GP surgery at end of previous week still nothing from GP, Monday morning we rang the GP to see if they had heard from Urgent carethey claimed not, that itself was strange as 20 mins before I had an auto update to have a telecom without another GP later in the week as I already had one for Tuesday PM we cancelled the later one, confusing isn't it??? .

Tuesday pm and callcrecieved from Gp to ask about some "minor aches and pains" I was suffering, fortunately my partner stepped in at this point, taking the phone away from me and sending me me into another room. After 55 days two MSK specialists, 1 set of X-rays, several attempts to see GP, one call to 111 who sent me straight to Urgent care to see a doctor (who was very good) his attempts to contact my GP, I have minor aches and pains. You can possibly see why my partner took over the callI was livid... Having explained to GP that I had not had a proper nights sleep for weeks (months ?) due to the pains I have and how generally **** I have been treated and feel on a constant 24 hour basis, The GP immediately took control of the situation and sent me some blood test forms and stated that he personally was going to oversee any treatment or referrals I needed.

Hey Ho despite rushing round and getting blood tests done ASAP on Wednesday its 4.20 am on Friday where I have been up since 12.00,I sleep when and where I can in full knowledge that it may only be 20 mins or so that I will be back up pacing round in severe pain (pacing is of course a figure of speech as I cannot pace due to the pains in my knee. scroll back to post 1 where painful knees are discussed.

I have just put in for response to blood tests as after looking around its possible that RA blood test can take longer than a week.

No offers of any pain relief to help me sleep have been made. medications I have on hand include paracetamol extra, ibuprofen extra, 2 different strengths of volterol, co-codamol, even some deep heat, none of them work very well or give much relief in terms of time.

for anyone interested, the blood tests requested by GP were:-

C REAACTIVE PROTEIN (CRP)

ESR (GP) (ESR) ESR Reason

ESR (GP) (FBC)

Rheumatoid factor (New) (RF2)

1x Clotted with gel (Serum) Gold Top, 1 x 4 ml EDTA ( Whole Blood) Lavender Top

ANA Screen (ANA)

1 x Gold Top with gel

All for multiple joint pain

more later.........

jamieA

Hi @sam496

My blood test results through my GP usually take just over a week to be reported back to me. When they were done in hospital they normally had the results next day. I don't know if it's the same throughout the UK but much of the correspondence between my medical services appears still to be done by paper and post. At least you appear to be moving forward - and hopefully your blood results will hasten a treatment plan for you.

sam496

Well surprise yesterday late afternoon, call from GP with some results of blood tests.

The results show that I have serious arthritis, and he has prescribed me 14 weeks of steroids and other medication to protect my stomach followed with calcium tablets to protect my Bones. He also said he was immediately going to refer me to a rheumatologist for treatment and I suspect proper diagnosis.

My opinion is that RA or OA will be the diagnosis, my initial application to see GP goes back to late November, I had already been in quite severe pain for several weeks.

2 MSK specialists (GP surgery) both said minor arthritis, despite one of them mentioning TKR within 2 mins of seeing me and booking x-rays on knees and hips 3 weeks later which latest GP reported as no appreciable wear or tear of knee joints and minor wear to hips but nowhere severe enough for a referral to rheumatology.

After this I again asked to see a named GP, result of this was telephone consultation 13 days later. a few days later I called 111 due to pains and lack of sleep and they made an appointment to see urgent care doctor within the hour.

Doctor at Urgent care centre was absolutely spot on with his diagnosis but said he had to refer me back to GP as that was how the system worked. This resulted in a SMS message for a telephone consultation some 10 days later. Cancelled due to GPcall being already arranged.

following the tele consultation with GP, which GP started out as he was calling about some minor aches and pains I was suffering !!! before I could get any answer out my partner had taken the phone and was explaining the problems to him and some progress was made with blood tests being ordered....and go back to start of post.

My confidence in the NHS is unchanged in that the service does step up as and when required.

These recent changes to how GP's work is detrimental to the way the NHS work. My surgery says that every enquiry (on line recommended) will result in a triage meeting to access need, asking who and how triages are carried seems to result in lots of stuttering. the net result is the same (at my GP's) every application to seek medical help will mean a telephone consultation with in the next (14 days) normally.

This thread was the first comment involving arthritis, I have not had a single pain free day since the start of the thread and have not slept for more than 3 hours in any one stint, usually followed by the time it takes for the next lot of painkillers to kick in.

hopefully next posts will bring more hopeful posts, my first morning dose of steroids was taken at 3,30am today. I'm going stretch that out to a more acceptable Breakfast time... still needed pain killers a couple hours later, and looking like I will need more shortly.

Thanks for all the replies, suggestions etc I have listened and researched all of them and my knowledge of Arthritic conditions goes up by a factor of 10 daily.

@sam496

sam496

Monday Slept a full 7 hours last night possibly longer but for the dog wanting someone to open the door :-) swelling of hands reduced somewhat, pain levels much reduced every where, standing up , getting in and out of the car are all much easier and less painful.

Thursday slept 5 hours last night, pain levels much reduced, if I move to far or to quickly it is still painful going to need some good stretches to make that much better, left hand index finger and thumb are both numb for some reason.

I have a bookmark referral at the local rheumatologists so hopeful that won't take too long and we can get bacon an even keel knee as the case may be.

Off to see "back to the future"the musical this afternoon so that should be a distraction .

Take care all

sam496

Latest update, approaching halfway of taking steroids, GP has updated my record and his diagnosis is inflammatory polyarthritis. and my rheumatology appointment is in 4 weeks time. GP has also prescribed Alendronic acid 1 dose weekly, I am not sure that whether I should start taking this or to wait until I have seen the rheumatologist? there's quite a lot of information about it and it's not all good. ..

generally feeling a lot better in myself, possibly due to getting some decent sleep and reduction in pain. still got a problem with index finger and thumb but stillbeen managing to get out in the workshop for a few hours a day which helps.

take care all

sam496

Got to see the rheumatologist last Thursday who has diagnosed me with psoriatic arthritis, She is arranging a scan of my knee and my shoulder after checking the joints. also has prescribed me with methotrexate and folic acid, also a couple of weeks worth of prednisolone (just in case). I am still mainly pain free but since reducing the steroids I can feel minimal pain in some joints. Sleep is not disturbed any more. Blood tests are required every two weeks for six weeks to establish the dose of Methotrexate needed.

Thanks to all who replied with advise on this thread it, I certainly know a bit more about arthritis than I did before.

I will update again as treatment progresses.

@sam496