Hi everyone, I'm new to the site and looking for some advice.
I'm 26 and 3 years ago I was diagnosed with RA, Initially before I started treatment it was pretty bad, the pain in my knees made it difficult to stand up, the pain in my wrists made it challenging just to put on a pair of socks!
I have been taking Hydroxycloroquine Sulfate twice a day since then & a NSAID, This has changed over the years but currently its Lodine. For the most part I consider my condition managed in that I am far better than I was at the beginning, there is only the occasional time for example my wrists or knees hurt.
The tops of my arm / shoulders however are another story, One side is particularly bad, The crunching and grinding noises it makes are horrendous, There is a general kinda localised pain there aswell, Its hard to describe but the best way I can put it is pretty much at all times of the joint. Why I am more concerned is I feel that it may be starting on the other side, Its a fraction compared to the other but I worry it could become the same.
I go to my rheumatology clinic every 6 months on a rotation bases of nurse/consultant. My situation has been like this for at least a year and a half, Each time I go I describe the above to them and they have me do various arm stretches / positions but because I basically have full mobility in the joint they don't see it as an issue and are not concerned about the cracking and that's where it ends, They think I have loose joints. I seen my consultant last month so it will be September before I am back.
I have also since been to my GP, Apparently the consultant has written that I have hypermobility joints... Having googled it I would have to disagree, All they want to do is refer me for Physio.
Thank you for taking the time to read this lengthy post, I just feel at a loss right now, For the most part if I didn't have this last problem then I would consider myself in pretty good shape.
Any thoughts would be greatly appreciated.
James
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JamesCH
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That's interesting, I always would have considered being double jointed as being flexible which I don't consider myself to be. I did tell my GP I wanted an x-ray but they were not interested in referring me, Their words were they wouldn't want to expose me to any unnecessary radiation...
Thats nonsense if you are having problems now .they should look into it.
They told me years ago that aches & pains were because i was double jointed but didn.t really explain anything else.
But have had exrays on my feet with my R/A and they said my ankles are not stable as when someone takes a step .we over step and our ankles roll which wears away and you are liable to fall and its the same for your arms back hips etc .
Have you had any imaging test on it cause I also have tendonitis in my left shoulder and it sounds a lot like the way you describe your problem just wanted to put that out there I do gets injections in that shoulder that help a lot good luck and keep pressing for answers
The only imaging I had done was right back at the beginning before starting treatment. As I said to keeta I told my GP I wanted an x-ray but they were not interested in referring me, Their words were they wouldn't want to expose me to any unnecessary radiation!
Having read up on tendonitis it does sound similar to my symptoms. Can I ask if you generally have pain in the area after your injection wares off? I assume its possible that it can "spread" to the other side?
l would not discount a visit to physio. Sometimes they can pick up joint issues or suggest exercises that help to strengthen the muscles around a joint which can help or even explain it more to you.
Hi Keeta, I'm still figuring my way round this site, I tried posting a general update rather than reply but it should be further down if you wish to read it
James. I really feel for you. I have had RA for 3 years but am older than you (48) but have similar issues. Any joint pain is debilitating, especially if your GP is not taking it seriously enough. You need to be persistent with them. Steroid injections into the joint by your rheumatology team will be the most effective and quick form of relief for you and would hopefully settle things down. In addition, If like me, if affects your sleep, then take anti inflammatory painkillers until it settles down. If you don’t currently have these on prescription then ask your GP otherwise ibruprofen over the counter. Strengthening the muscles around your hypermobile joints will be important going forward so Advice from a physio would be good. Otherwise the RA society produce leaflets with suggested exercises to do daily at home. I’ve let my exercise regime slip in the last few months and I’m now paying the price for that as everything is flaring again.
The other thing to mention is if you’re in a lot of pain, consider easing off inflammatory foods (I find gluten and things like tomatoes are not great ) and alcohol for a while to see if it helps to settle things down.
I hope you get the support from your GP that you really need going forward. Good luck.
Hi, Sorry to hear that, Yes its difficult, When you make an appointment at my GP practice its pretty much just a case of who is available. I am trying to get another appointment but this time I am going to specifically ask for the first Dr I seen, He seemed helpful, Was the first to suggest RA and referred me for x-rays on my hands.
Not being a big fan of needles I cant say it sounds appealing but its got to be better than where I am at right now! It can affect my sleep, I awoke just the other night to ridiculous pain in it. The only prescribed anti inflammatory I am on is Etodolac
Thank you, I will take a look at the leaflets while I await my physio appointment.
Similar issues here to, James. RA in many joints, of which, shoulders, arms, hands, feet are giving me the most grief. Varying degrees of constant pain from shoulder joints to finger tips of both arms. Toothache like localised pain in some joints, especially shoulder. More of a searing nerve type pain in whole arm on times, especially from elbow up. Can't even raise my arms to the horizontal position most days. My rheumy has no doubts that RA is the cause.
Hedgehog gives some sound advice, especially about being persistent with your docs. As difficult as it can be we do need to speak up on times, especially when a doc is more concerned about someone being irradiated by an x-ray rather than trying to find the cause of their problem.
Thank you for the advice, I'm sorry to hear of your problems.
Truthfully it is something I struggle with, I don't do well in these appointment based situations, I know in my heart I am not forceful enough to get what I need, Something I will need to work on! I feel its easy for them to just dismiss you when they don't have a clue what its like living with it on a daily basis.
As you are so young don't be palmed off. Ask for x-rays on both shoulders and knees stating that you're not happy to carry on like this. It needs to be under control a s a p otherwise you'll have a lot of damage and diformity. You are too young for this as you have your life ahead of you. At your next rheumy appoint take a pen and pad to write notes on their reactions to you question/suggestions. This will make them feel uncomfortable but often works. Take care xxxx
Thanks, I am trying to get another GP appointment.
I need an x-ray because I just don't feel like its right, I wouldn't be surprised to learn if there is damage there already. That's a good tip about writing notes, I often feel uncomfortable in appointments so it would be good to turn that around
Just a thought James, is there someone who can come with you to your appointments who understands what you’re going through? Another pair of ears or someone to help in these situations can often be beneficial.
Thanks for the suggestion. I imagine I could get a family member to come along to some appointments but I will still try to be more forceful going forwards.
Hi hedgehog45, I'm still figuring my way round this site, I tried posting a general update rather than reply but it should be further down if you wish to read it
In light of your GP's response regarding an XRay, ask them to send you for an ultrasound on the shoulder instead as no radiation involved. At least that should show if there is any damage to the tissue and may lead to them agreeing to an XRay. I have problems with my right shoulder and have had both an ultrasound and latterly an XRay done on it to see what the issues are. I have damage to the tissue which is restricting movement, I can't raise it above shoulder level. I suspect some of this is due to the RA but some may well be due to overuse the other year. The left shoulder appears at time to be going the same way but I think some of it may be just down to inflammation and having started taking VitaminD in January due to being severely deficient, this seems to be helping both so I'm monitoring for now. My Rheumi wanted to refer me to the orthopaedic surgeon for advice but am resisting for now.
Sorry to hear of your problems, That's a good idea about an ultrasound, I am trying to get another appointment, This time with the GP I seen just before being diagnosed because he was the most helpful. I will take a look into Vitamin D myself.
Its best to get VitD tested before supplementing because high doses can affect calcium absorption which can affect the thyroid adversely. That said, I know some GPs are reluctant to test it for any patients not just those with RA, yet I understand many RA suffers are known to have issues with VitD deficiency. I really wonder why its not part of routine testing for us. I only got tested last November as I enquired whether it had been ever done since developing RA in 2010 because of press coverage. I didn't think it had ever been done and that was the case. It came back as below 14 and therefore severely deficient.
Hi James - sorry to hear about the pain in your shoulder and know just how it feels. Since November I have been suffering with left shoulder pain and eventually got to the point where I had difficulty raising my arm or reaching round to my back.
I mentioned the pain and difficulties to my consultant on my last visit and he said to treat it with deep heat ointment or something similar.
In February the pain and discomfort got really bad and started to affect my sleep as I could not lie on my left side. The pain escalated down my arm and I constantly have pins and needles in my hand.
I went to see my GP and she was really helpful. She sent me for an x-ray which showed I had some degeneration in the shoulder and she also arranged an ultrasound scan. The scan highlighted that I had tendonitis and bursitis of the shoulder.
My GP has arranged physiotherapy for me and I am going for my first session today, and hopefully things will start to get better.
I have had RA for 6 years now and have been prescribed methotrexate injections weekly and golimumab injections monthly.
Hope you manage to get yourself sorted and try and push for an xray and ultrasound. Good luck.
I have tried various types of gels like voltarol, deep heat, deep freeze etc but sadly none seem to have any effect for me.
I'm glad your GP was able to help, I am trying to make another appointment myself but they don't have any till mid May, I have to call back each morning to see if there are any cancellations.
Good luck with your physio appointment, I hope it goes well and you see an improvement.
Just a small update. So I called this morning when they opened, I miraculously got an appoint for today with the doctor I wanted, As I suspected he was far more sympathetic, Had me do various motions to assess movement, and agreed with the cracking noises. He gave me a drop in appointment for an x-ray which I have done, Now I just need to wait 2 weeks for the result.
Also gave me a prescription for co-codamol and depending on the results of the x-ray the option of an injection into it if I need to go back.
Cant say its a very appealing thought with my needle phobia but I guess its something I should do.
Thanks Kathy, Yes I'm trying not to, To be fair he also said that if I don't find the weaker co-codamol useful he would switch it to the stronger version. I do also already take omeprazole so that should be fine.
I'll be sure to post back when I get the results in around 2 weeks.
Cant believe two weeks have passed already! Called today for my results and the receptionist told me that everything was fine and there are no abnormality's. Which is good to hear.
This surprises me but im not entirely sure what that means as they didn't go into any more details. Either way I got another appointment with that specific GP for two weeks time to see if he can go into any more details or has other suggestions.
I bought one of the buckwheat pillows that I seen someone on here posting about a few weeks ago and I actually think it could be helping. Touch wood
Ahh bless you james.i.m so pleased that your results are good .but still worried as to why you have so much pain.when my husband goes to see his Gp. He doesn.t ask questions.don.t know if its just a man thing. But you need to and if he rambles on .and you don.t understand .say can
you explain why .or
run that by me again.
Ask what he can do about your pain.and what he thinks is causing it.are you in the right meds to deal with yor pain. Do you need physio.?
Thank you so much for letting me know .take care .gentle hugs .kathy.
Thanks Kathy, That’s good advice, I do have a habit of just listening more than anything.
I’d like to know more than anything what’s causing the noise in the joint but I guess as the x-ray showed nothing it will be more of a guess than anything.
I’m still waiting on my physio appointment, think it could be a fair wait yet
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