Is it OK for me to be here?

I know NRAS is for RA sufferers, while many of you have RA in all main joints, my rheumatologist (after only examining toes to knees, not hands, shoulders, neck - all the joints that hurt like crazy) tells me I have OA..

I've had, from two ortho surgeons, one private, one NHS that I def have Arthritis in both shoulders, all fingers, thumbs,, hands, but their concern was operating on my shoulder impingement and fixing that, they weren't prepared to tell me what type of Arthritis they found, and as the rheumy only checked to my knees, removed fluid build up in the right one, then gave me the anesthetic, then the steroid (injection from hell !) She's only guessing the rest of my joints are OA too.

Everything everyone possts about their RA, I can relate tooo.

I did try to ask the rheumatologist questions please, but she completely yy ignored me, was laughing with a colleague then just coldly said " just see your GP for pain relief, I have a 1pm meeting I'm already late for", then she walked off.

With this being for RA, and her saying and guessing at my OA, I just wanted to make sure it was OK for me to be in here or post in here.

Jules.

26 Replies

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  • Hi Jules , of course you can be on here I think

    , pain and lack of mobility is common to Us all even if the drug regimes are not.

    There is a more specific OA charity site I know of arthritis research which seems to deal more with OA than inflammatory disease .

    Look through lots of sites until you find one that answered your questions and you feel supported in and if that's here great!

    I have both RA and OA and the OA is just as painful and troublesome but with less treatments xx

    Nice to see you posting X

  • Of course it is Jules. I have with RD & OA & whilst the treatments are different they're both pretty painful if not medicated correctly. I understand that you've seen a Rheumy, you don't say but have you ever had blood work done to determine that you do not have RD? The Rheumy can't guess that you 'just' have OA, she needs to confirm with you just what she's treating, that will go a long way to helping you cope with & understand what you're dealing with.

    My Rheumy doesn't treat my OA, like yours she asked my GP to take the lead with my pain relief. Since I chose her as my named GP she's increased her knowledge of RD which as she said herself was limited & I had no reason to expect more from a GP but it's really helped. I had regular pain relief reviews so I could start at low doses & increase them each month to reach the point I'm at now. I take 50mg amitriptyline a night, weekly 20mcg/hr BuTrans patches & 30/500mg co-codamol for breakthrough pain. I also take an NSAID, 90mg etoricoxib, for both RD & OA & daily 1000mg Omega 3 fish oil.

    Sitting too long & OA don't mix in my experience. Evenings are worse & I try to get up every now & then but I admit it's something I need to keep reminding myself to do, after evening meds I tend to relax in the recliner & apt to wake up at silly o'clock to go off to bed.

    Can I suggest something? If your GP hasn't do ask if he'll test you for RD (I should explain some of us choose to use the term Rheumatoid Disease rather than Arthritis, it helps distinguish between the two RA & OA) if he hasn't already just so it's confirmed it's OA you have or whether you have rheumatoid gurgling away. I'm just a bit concerned that it seems nobody you've seen has confirmed just what it is you have, guessing isn't acceptable. Also you may like to think about being referred to a different Rheumy, possibly for a second opinion depending on the blood test results.

    Hope to see you around more, you may find you recognise more symptoms.

  • Hi nomoreheels, I did have a bunch of blood tests done, but the last time I spoke with my GP, he said not all results were back, that he'd rather wait till they were before discussing with it with me. After Fridays rheumy visit, I rang my gp's from the train station and asked for an appointment. I'm seeing him Tuesday at 4pm.

    I've been (ages ago) to B&Q and got a cheap tool box. Large singular compartment on the bottom with a top shelf. I have so many meds now from the past 6 years, I needed somewhere to keep them all..

    I was on Amitriptyline, I asked the other GP what main side effects to expect, his reply was "just a dry mouth".

    It wasn't until I fell over and brikebmy nose that I read a common side effect is how it may affect my balance and coordination. Needless to say I stopped taking those.

    The list of meds I've been on/tried is endless. My GP was concerned when he suddenly looked at the list on his pc, just as he was about to prescribe more meds and saw just how many he already had me on.

    We've cut them way back. I'm now on :

    440mg oxycodone daily

    25mg diazapam daily (in 5mg tabs)

    30ml oramorph daily

    He took me off all nsaids when he decided they weren't doing anything at all for me.

    Obviously I can't stay on those meds a lifetime, so Tuesday, apart from chatting about the rheumy and blood tests, we need to work out a drug plan.

  • Yes I think that's wise, start over again with a more tailored plan but if it was me I'd be tempted to wait until all the bloods are back, my concern is two fold. Firstly some of the meds you're currently taking will need to be tapered safely & secondly they may affect your inflammation levels (ESR & CRP), certainly your pain tolerance possibly giving a false negative so your GP may suggest he repeats the blood tests when he's confident have left your system & not affect the results.

    About amitriptyline, what time of day were you taking it & what was your starting dose? The reason I ask is because it is a good med for OA, it relaxes the muscles but timing when you take it is key. I used to take mine with my evening meds just before dinner at 8pm but I found that I was falling asleep by 10pm. I'm a night bird & that was rubbish so I now take it at 11pm which means I can get on with what I want to do be it reading, contact with friends via email or being here catching up on pm's & if I nod off at least I've had some sleep & then off to bed I go. My starting dose was 5mg increasing monthly until I reached the dose most effective for me, 50mg, the same for BuTrans, starting dose 5mcg/hr working up to 20mcg/hr. I have a proper nights sleep nowadays which I couldn't do before for the back & neck pain (lumbar & cervical spondylosis, OA) & it's helped me enormously to cope during the day. Obviously if it bothers you it's just not worth trying but I thought if my experience of it made sense, when best to take it, then maybe it could be worth another go. Your GP's correct it can cause dry mouth but a few of my meds do so I'm prescribed Biotène gel which helps & being on MTX I drink plenty water throughout the day.

    NSAIDs are commonly used for OA. I mentioned I take etoricoxib, that's because it works best for me but I have tried 4 since diagnosis (2008 both seropositive RD & OA). Maybe it's similar for you & you've just not found the right one?

    I hope your appointment is fruitful, do keep in touch & keep us updated.

  • Hi, nice to hear from you, definitely OK for you to be here as far as I am concerned, some of us have wonderful supportive GP s and rheumatologist s, others are not so lucky, my advice is do your research and question. Don't be fobbed off, I was, and wished I had had more knowledge and been more pushy. Very best of luck :)

  • I think your rheumy nurse should be shot for treating you like that. You have a right to be here Arthur is arthur whatever form it is and most of us with ra also have oa so stop worrying and get posting ok.xxxxx

  • Hello Jules,

    Sorry you are going through all this, particularly with limited interest from the so-called medical professionals.

    I am a relative newby here but I am sure I don't speak just for myself in saying you are most welcome here, particularly since since this seems to be a great place not only for moral support but a wealth of knowledge and genuine and helpful feedback.

    I suspect you will find that others have been diagnosed or mis-diagnosed as well and will be able to help you. Best of luck. Smiley-face!

  • Hi Jules welcome to the site. Many of us have oa as well as RA (i have oa in my shoulder) and you are very welcome. I am upset to hear how you have been treated. Can you see your gp and tell him/her you were not happy and ask to be referred elsewhere or write to the hospital and ask to see I different consultant. You are quite entitled to do it. There must have been a reason you were referred to a rheumatologist maybe positive blood tests from your gp? Good luck with whatever you do and let us know xxx

  • I think your fine as there seems to be both forms of RA and OS in most of us So welcome

  • I started out with just OA too in my knees. Then my hands started to swell in high humidity. Now i have RA too the past four years plus they have now added Sjogren's syndrome. Hope you have better luck with your knees than i have. I now have a right knee replacement. Fyi. The fluid shots don't hurt likethe steroid shots in your knees. At least for me they didn't.

  • I would definitely ask GP for further tests to check out whether or not you have RA given the number of joints involved. However if it's not RA There will be lots of advice you will find helpful on the site, we all have pain and RA patients a go on to develop OA too. There is a great deal of crossover between the two conditions but some significant differences. Some of the treatments and drugs like anti inflammatories and those for pain relief are the same. When we talk about DMARDs and Biologics then these are unlikely to be prescribed for OA. I have certainly had the procedure you describe for your knees done on my knees a good number of times and it provided good short term relief.

    A major difference is that RA can be very erosive on all joints if left unchecked leading to considerable disability and deformity, it can also affect other organs like lungs and heart, ligaments and tendons, cause constant flu like symptoms and exhaustion; it can begin at any age, some children have it from birth. Historically, without recent drug developments people's life expectancy was considerably reduced. It is for these reasons that a number of RA charities have been set up to promote research, provide up to date information, promote public awareness and provide individuals support. Of course there are different levels of severity from mild to severe but you can see why it's important to push for a clear diagnosis and to make sure you receive the right treatment if you have RA.

    Get a second opinion.

  • Hi kohai, welcome. Like you, I have widespread pain and joint damage around my body. Until November, rheumatologists told me I 'only' had OA too. Their explanations for it being so widespread varied from "It's just bad luck" to "You have hypermobility syndrome and the extra bendiness has worn your joints out sooner". Then a hand ultrasound in Nov showed synovitis, and my current rheumy added the diagnosis of inflammatory arthritis. Then a rash appeared in Jan and my diagnosis became psoriatic arthritis...

    The first question to ask is how do they know it is OA? How many of your joints have been X-rayed? You can't *see* OA, so doctors can't confirm it until a joint has been X-rayed. Joints with OA usually look different from joints with inflammatory arthritis such as RA, ask for X-rays of any that have not had them. Personally, if your hands hurt and hand X-Rays are normal, I would ask for an ultrasound, which will show up inflammation...

    The next question to ask (yourself and doctors) is WHY do you have OA in so many places? OA is a disease of wear and tear - your joints degenerate through long and/or heavy use. You don't look very old, and it is just NOT normal for younger people to have so many joints degenerating through wear and tear, including ones that are not weight-bearing. If you have a condition like hypermobility syndrome or you were an Olympic gymnast, then maybe you have a reasonable explanation; if not, you still need answers.

    If there isn't a convincing answer, and/or X-rays show joints that hurt but don't have OA degeneration, then you need to start thinking about other possible explanations. RA and the other inflammatory conditions are immune system breakdowns: for some reason (often unknown) your immune system starts attacking your own body, particularly your joints. The attacked joints become inflamed, and over years, if not treated, the inflammation eats away at them. Because it's an immune system problem, you are more likely to have many joints affected (but not everyone does) and may have other problems too...

    Many but not all people with an inflammatory arthritis have blood markers that show inflammation. You should ask for blood tests to check yours, if you haven't already. At least, you need tests for RF, CRP and anti-CCP. If you 'only' have OA, they will be normal; they may still be normal if you have RA; but if they are not normal, it suggests you don't 'just' have OA but may have an inflammatory arthritis too.

    There are some other things to consider. There are certain other problems that tend to go along with inflammatory arthritis, because it's an immune system problem. Particularly, if you have psoriasis or long-standing skin rashes, irritable bowel syndrome (IBS), diabetes, iritis/uveitis (eye inflammation) or recurring tendon inflammations (like bursitis, 'tennis elbow', 'housemaid's knee') then these are signs that you may have systemic inflammation causing your joint pain too, not 'just' OA. Come back and tell us about any of this, and some of us will have other things to say...

  • Welcome! I can't add anything useful to the responses above. I too, have both OA and RA, notably in my knees. When the RA is flaring, that pain is dominant, with extreme stiffnessand swelling . When it's more under control, I feel the OA. The joints are looser and there is the grinding bone-on-bone. I'm due to have knee replacements, but it's twice been postponed because of infections or complications.

    I would definitely go back to your GP and find out if you've had the Anti CCP and Rheumatoid Factor tests. Also ESR and CRP . If not, why not?!

    You'll find this is a wonderfully supportive group. Re organisations, Arthritis Research might suit you best, depending on results of blood tests mentioned above.

    Hope to see you here again soon. Do let us know how you get on. Jora

  • I have had to struggle with changing diagnosis, worsening health and have now been put onto suitable medication. So intially I felt the same as you and did not know if I should be on this site as did not have RA. Now I am so glad I joined as everyone has been so helpful, kind and the advice has been of great benifit to me. I do have arthritis issues but it has been complicated. Welcome and good luck, Lou xx

  • Welcome aboard......

  • flow4, I'll go through your post again and answer everything, but for now, until I see my GP Tuesday (and make sure I get a copy) I honestly don't know what i've been blood tested for.

    As for tennis elbow, yes, I've had that in both arms, and still have it since about 2012.

    I had shoulder impingement in the left shoulder first, then got tennis elbow in my right arm. Few months later I got shoulder impingement in the other shoulder, then tennis elbow in the other arm.

    I've always been very active, I was a workaholic for years till I had to stop due to everything hurting, fatigue and the meds messing with my mind and memory.

    My main hobby was mountaineering or hill walking. I've always been a long distance walker so 30 miles in a day was nothing for me, it didn't even cause aches I was so used to it, hence the frustration klls me now I don't have the strength in my legs to get upstairs or in my hands/arms without excruciating pain. I try just putting one hand on the Bannister for support and use my stick in the other as best I can, but I can't make it up stairs without at least one hand on the left or right Bannister or I'm completely unstable.

    I'll finish this later, it's taking its toll out in my hands now so I need to stop writing for a bit..

  • I was sent away from first consultant as i didnt have RD. My GP was treating me and asked for help at a different hospital and a Rhuemy. At this second hospital i saw two consultant who dealt with different areas until the last one who took a look at my scalp, and said PsA and that is what i'm treated for. I also have OA apparently in the top of my spine? I'm not convinced of this. So yes get bloods done even if you have no signs in your blood for RD then you could have PsA like me and a few others on here.

    Would like to know the results of your tests. .

    Chris

  • You are more than welcome on this community, but there is also

    healthunlocked.com/arthriti...

    which is a community that discusses ALL types of arthritis. It would probably be worth joining both of them.

  • Arthrities is Arthrities no matter which type they are, I have a mixture of SLE,OA & RA &'I am a member of this group .

    If your truly uncomfortable or unhappy with your Consultant, then change from her., it's your choice.

  • Three types of arthritis Cal66? Now that really is greedy. ;)

    I second what you've said, anyone can ask for a second opinion whatever your stage of diagnosis or treatment.

  • Hi there Kohai. Of course it's okay for you to be here. You are getting some good advice with what to ask for to be checked for RA and I don't want to confuse the issue. Blood tests are a good start but I am one of the people whose blood work never shows up the RA even when my knees are the size of melons and my spine won't allow me to sit up.

    If the blood work doesn't show anything that is not enough to rule out RA and a good or even half way decent rheumatologist should know that.

    It's so important that if you have it they find out and treat it quickly because unlike OA it can turn up in one or many joints with no warning and run riot. And like others have said affect other parts of the body. I have had it in my eyes as a child.

    Many posters on here have osteoarthritis as well and those who don't probably will (cheery thought) because we are at high risk for it. Lucky us.

    But whichever flavour your arthritis comes in we are all here to support each other so if it turns out that you just have one type (which is more than enough isn't it? Any more is just greedy! ) then you are welcome to chat whenever. We don't bite.

  • Thank you all so much for the warm welcome and all of the help and advice. It is all really appreciated.

    I' be always thought my GP was great, he always did what he could to help.

    This is literally all I know ->

    Each time my GP puts in a request for an MRI, he's being turned down. (He said all patients not just me)

    He said bloodworks didn't show any indication of RA

    I asked " so is this pain just going to keep getting worse till it's totally debilitating. " , he replied that he didn't know, only time would tell.

    He just pulled a face and asked who the rheumy was when I told him what happened Friday when I went for that steroid injection.

    I told him my hubby was talking about my going camping again if we get hot weather after my pending shoulder surgery, he told me I wouldn't be going anywhere for quite some time.

    I asked, with it now being a lifetime of meds from him now, what about my meds as he's not happy as it is with my taking 25mg diazepam a day as it is, and he knows my oxycontin dosage will just keep going up.. He just asked if I felt it was possible to drop down from 25 to 15mg diaz a day, that was it.

    I asked why I have OA in so many places, he said it can happen like that, it's just one of those things. Not much else s actually know about it.

    Friday when I rang the surgery, 8 made an appointment to see him. I was told Tues 4pm. I got there in plenty of time to be told "we have you down as having the appointment with the. nurse.

    They messed up and I got half the time with my GP to prevent him being late seeing everyone else

    So that was it.

    Also being in Wales with not only a hospital shortage, we're short on all types of specialists, hence massive waiting lists.

    If I wanted to see a different rheumy I'd like have to travel hours.

    People in Wales aren't allowed to be treated In England either unless it's an emergency.

    I'm freezing,all of me hurts so am gonna take meds and try sleep through the pain for a few hours

    Thank you all so much for caring

  • Wow you do have a lot going on, sorry you have so much to deal with and the associated pain.

    See, I told you they weren't a bad bunch here! lol...... You are in the right place. I don't know a lot of the technical stuff but I do know that I feel like I am getting worse as each year goes by and they try to add more drugs to the list. It does seem to be an endless cycle/battle and I think all the 'Professionals' know how to do is write the prescriptions and send you on your way, but often after basically telling you that your problems/side effects aren't related to the drugs.... Bullshit I think! We can't possibly become more well as time goes by when our immune systems are not only attacking themselves but being further compromised by the drugs, it just doesn't seem logical to me. I also feel like the longer they deal with me the less interested they are lol.... so nice to feel wanted lol but clearly I am not alone.

    Sorry I can't be much help but I think if you keep checking in here you won't feel so alone in your battle and you are preaching to the converted lol,

    we all know what it's like, to varying degrees and we can all sympathise which is what we need, a support network.

    Look after yourself, Smiley-face!

  • :)

    Well, there isn't really much anyone can say. The doc basically put it in black and white with no frills.

    sorry for all the typo's. I tend to log in via my phone and the keyboard has a sense of humour. It likes to change things like e to 8, or i to a double ss just as i submit the post.

    (I have yboarda bluetooth wireless mini ke)<< example - i have a blue tooth wireless keyboard as the tables we have for computers, i have to raise my arm too high to use the mouse, which hurts. This keyboard was a cheaper option than smaller tables etc. but from the first line of this paragraph, as you see, the mouse likes to re-position itself mid typing, thats the reason for the typo's, and i can't touch type with this little thing.

    I use it to humour hubby, he gets a little "hurt feelings" if i don't use gadgets he's gone searching for that he thinks will help me more, bless him .. he does try.

    Saying that, he did find me two brand new tens machines in a charity shop, both with new pads, 8 pound each.

    On that note, dunno whats going on with me today, started to try and tidy, i think i just made more mess,but i've put the leccy blanket on and gonna try sleep.

    Sun shining, warm outside for a change but i think my fatigue is back. Whenever i'm tired, i get seriously cold and nothing else helps.

    (more so as i have raynauds) Hubby has taken himself off camping for 48-57 hrs, his sanity break. He''s always relatively close so can get back if i need him, but it gives me a break too.

    Thank you all for your kindness, the welcome and all of the support, i really do appreciate it :)

  • We not mind the typos, we are all more than capable of those.

    So nice that your hubby is so caring, tlc goes a long way. I find that often

    I can't get things right either and make more chaos, goes with the fuzzy brain unfortunately. I have learnt not to expect to have a fully functioning brain any more 'cos it's not like it's separate from the old body so it is bound to suffer ill-effects as well. Sounds like you have the right idea to snuggle up.

    Be kind to yourself, maybe have a treat, or two or three lol, you deserve it.

    Smiley-face!

  • Your treatment leaves a lot to be desired. It's good that your hubbie is so supportive. I agree with brightangel look after yourself and give yourself some well deserved treats. Keep talking to us Kohai whenever you need support there is always someone here. xx

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