As most of you know I have quite a lot of medical problems, but this one is really getting me down. First saw GP in 2012 sent for X-ray which confirmed osteoarthritis in hands/fingers and inflammation in fingers, but not joints, after having ultrasound scan. My fingers have been swollen, hot and very painful all this time. Seen Rheumatologists, first one left so now see the top one at our local hospital, firstly he said it was sero negative inflammatory Arthritis, started on MTX and folic acid took for over 3 months but had very bad side effects, changed to Sulphasalazine took for 4/5 months did nothing, but give me headaches and nausea etc., have been taking Hydroxychloroquine for nearly six months still no difference in pain, swelling or stiffness. At my last appointment in January he said he doesn't think it is Arthritis and didn't want to see me for 9 months. I have now spoke to gp who has advised I contact Rheumy nurse for advise as he said getting a second opinion (which I asked for) is going against the rheumy who is top consultant and that I would have to start from scratch with all the blood tests and scans and X-rays. The nurse called me back yesterday and the consultant has said he doesn't think he can do any more for me, but has agreed to bring my appointment forward to the next earliest available. I am at my whits end as to what to do now, what to expect from this appointment and who to turn to. I cannot tolerate strong pain meds, I take the max dose of paracetamol daily and have done for many years for fibromyalgia, I take steroids for lung condition, but can't have the injections because of diabetes, I can't take anti inflammatories due to asthma. What can I do now?
Sorry for the long ongoing saga, don't know where else to go to rant.
Jan
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Titchyj
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I don't think much of your GP's advice! Sounds like a fob off to me to try to make getting a second opinion sound like a such a palaver, especially when it's so easy to copy results & x-rays and so on to another consultant. Either that or your GP is a big wuss who for seem reason doesn't want to offend your consultant.
But if you have got another appointment booked with consultant then perhaps need to have that first, and really stick to your guns & push him or her to explain. If it were me I'd be wanting ask him what made him think it was inflammatory arthritis in the first place, and what's now different enough to make him change his mind? And be wanting him to explain why it couldn't still be one of the mixed connective tissue disorders, but just not responding to the drugs you've tried. You could also ask him directly to send you to another consultant for a review of your results etc - perhaps one that specialises more in mixed connective tissue disorders? Be brave, and a bit bolshy!
Thank you Helixhelix, I agree I will have to push for some answers, today I asked my H if he would come with me this time, he usually drives me, but he has recently had a shoulder op so the driving is now down to me, which isn't helping. He has agreed to come, perhaps having someone with me will push the consultant to give us some idea as to what is going on with my hands. If not I will ask about a referral to someone who can possibly help.
I'm so sorry Jan, you've enough to cope with without the not knowing what the heck's going on. What I'd be pushing for is what your Rheumy is basing his thoughts on, you have obvious swelling & pain so just what does he think is the problem & why has he decided he can't help you? If it's that you're not responding to the meds you've tried so far then I think that's a weak reason, certainly not acceptable in my book. If it's OA then he needs to be clear & although you say you can't take NSAIDS there are other options for you.
As Helix says it does sound that your GP doesn't want you seeking a second opinion for fear of upsetting him, not acceptable as far as you're concerned though is it? You need answers & if it takes starting from scratch then maybe that's no bad thing. Before that though I would attend your next appointment & from that you need to determine where you go from there, it's what I'd do, see what his reasoning is behind he can do no more for you. As a matter of interest did this latest Rheumy rely on the previous one's imaging & test results or did he order his own set when you first saw him? If he didn't then maybe a new set should be done to have an up to date view of just what's going on, maybe then you can decide which course of action to take next.
However it pans out you need answers, who know what damage can be done in the meantime, I really feel for you. x
Hi ther NMHs, under this latest consultant, I paid for my first ultra sound scan as there was such a waiting list, this showed the inflammation in the fingers, but not on the joints. The fingers are still the same as that day, and may be slightly worse. He arranged another scan last year on the NHS, this showing the same inflammation, but no joint involvement. In January I had xrays, not had any results as he said if there was nothing different I would not be contacted. Also had more blood tests done last year. I now have lumps appearing on the side of some fingers and one at the base of the big finger on the palm side. Don't know what these are, my index finger is bending towards the little finger on my left hand and the all look lumpy and are very swollen and stiff. My mother had a saying "if I wasn't so big I would cry". I feel like this most of the time, but if I start I don't think I would stop. It's just getting all too much on top of all my other probs.
My GP practice is merging with another local one on the 1 April and there are 4 extra doctors, so maybe I will get better service from one of these. Won't hold my breath though.
Oh, Jan, I'm spitting for you (lone of my mum's sayings "I'm so mad I could spit! - didn't they have some great sayings!). Something is causing that inflammation, do you think it could be OA, though he should know what that looks like & I'm unsure about the lumps being on the side & under at the base of your finger on your palm. Google under images for Heberdens nodes & ganglions, see if anything looks like yours, or alternatively & probably better if you take a pic of your hand & post it, let's see if any of us can identify what they could be. Your finger bending sounds suspiciously like the beginings of ulnar drift though that tends to be all the fingers getting cosy with the little finger.
You can only hope the Surgery merge brings with it at least one good GP, hopefully one with an interest in Rheumatology though they are few & far between.
Yes the old sayings were great weren't they. Will get H to take a picture as I can't hold the iPad. The one at the bottom of my middle finger you can only feel and not see. The palms are bright red and red hot. Will check out the images you have given, thank you for your support it means a lot to me that everyone has some suggestions as to what it could be it is much appreciated. Hopefully I will get some answers soon.
Jan the one underneath your middle finger, if you press it (if you can without it hurting) does your finger move? If it does & you've only noticed it recently it could be a precurser to Dupuytrens' contracture/disease as it doesn't always follow that the finger bends in. It's more common with people not only with RD or variations but people like you with diabetes.
Thanks Allanah, I will keep pushing, just need to get things into perspective and get some answers.
Jan
Hi Jan. You can have inflammation in your connective tissue without having it in the joints. It simply means you have some form of connective tissue disease rather than RA.
As I think you will know I too am in a similar boat to you re drug intolerences but thankfully my rheumy last week did acknowledge that I have some kind of long term inflammatory condition/ multisystem autoimmunity and agreed to let me try a fourth DMARD, Azathioprine once my chest is clear of infection.
I agree with Helix that your GP is probably just fobbing you off because it's more work for him or her to fight your corner and refer you for a second opinion. If you can get a referral I don't see why they can't access the same results via the NHS Sci-store as I think it's known? Or why your GP can't just include the most recent ones with the referral letter? Sounds a bit fishy to me.
Have you asked for a copy of your present consultant's most recent letter - it would be helpful for you to know what exactly he is saying. Is he putting all your symptoms down to Fibromyalgia I wonder?
I think the problem for both of us is the fact that we are so intolerant of drugs and this represents more work and far more frustration for doctors than those patients with aggressive disease who can tolerate the drugs and who fit into their boxes re diagnostic criteria, erosions etc. So it is more tempting to fob us off and see us as infrequently as possible because to a large extent we represent a higher workload and also failure on their part.
I would keep pushing and really try flag up the inflammation side of things because Fibro isn't an inflammatory condition and many different connective tissue diseases are. Swollen fingers could be all kinds of things and if it doesn't come under rheumatology then where does it sit? Sometimes I think rheumatologists focus hardest on joints because these are the parts they can see and touch and because they cost the NHS a lot of money to replace. Nerves and tendons are just as important but they can't replace them or medicate as effectively. Most of my inflammation has been in my soft tissue to date.
Diseases such as PsA (even without the Psoriasis) and Lupus and undifferentiated or mixed connective tissue disease and Sjogrens all can cause more inflammation in the soft tissue i.e tendons and nerves and this is still a rheumatology matter and these conditions still need treating. Keep fighting your corner! Twitchy X
PS and there is Vasculitis and Scleroderma - not that I'm suggesting you have either of these but something must be going on because OA doesn't show up on MRI as inflammation.
Thanks Twitchytoes, I know you have suffered badly too, glad your RHEUMY is at least trying to help you. I will look into these connective tissue diseases too. The soles of my feet are also very red and hot and my toes very painful, these haves shown OA on xrays previously, but he didn't know what was causing the redness or heat. I suggest to my gp I could get the relevant copies of test results, but he just said it would take a long time to get them all. As you have said just fobbing me off. I will request the last letter tomorrow.
Thanks for all your help it is greatly appreciated as is everyone's on this wonderful group. Haven't had an MRI yet, but ultrasound scan, twice, plus xrays.
Well my feet were like this the last time I was in flare. Nothing showed up in x-Ray though but metatarsal joints and toe pads were on fire and my ESR was 62. I looked up connective tissue inflammation after reading your post and feel your problems must surely be related to these but I'm no expert. I have small fiber neuropathy, Morton's neuromas and Raynauds in my feet so it is all quite confusing.
Many years ago I had fibroblasts removed from my toe, maybe a connection to some of my problems. The nail on my big toe is very badly damaged and I get a lot of pain there too. I'm just falling apart at the seams at present. Will look at the connective tissue inflamation you suggested.
Jan
Hi Jan, just recovering from being sick after taking horrid antibiotic. Going to tell the surgeon about this re my upper abdominal issues as I am certain these are connected. Did you manage to shift the chest infection without more abtibiotics?
I know Allanah has Fibroblastic RA and your hand problems sound a little similar so I hope she spots this. But her much loved auntie has just died so maybe worth PMing Her?
Had to stop the Clarithromycin because of hives, then had another one, doxycycline eventually shifted the chest infection, but left with a very hoarse voice, it is getting better, hope you recover soon. Will look at fibroblastic RA.
My voice has turned positively manly! And if I'm foolish enough to laugh then this turns into a great rattling wheeze! Ive had this before and it really upsets me because I know I won't be able to sing in my choir again for months - even as a tenor or bass!
Jan, I think I'm going to have to move to the UK and just spend some time slapping doctors. I'm so sorry you've been treated this way! (not that I haven't got a few Canadian doctors to slap first, but I can only do one at a time.) And seriously, your medical information is YOURS, and I think if you want copies that shouldn't be any more difficult that for the doctor to learn how to use a copier.
Thank you Bat, I will chase up the copies, I'm sure my GP was just fobbing me off, as his surgery is about to merge with another on the 1st April, probably dosen't need the hassle.
Jan I wonder if that rheumy is looking at you and just going Oh fibromylagia all the rest is down to that. I ha d a registrar who is trying to do that to me and I keep saying you are not my real rheumatologist stop trying to re-diagnose me. Makes me cranky that they are lazy. surely with your hands looking the way they do and everything else he can not dismiss it as just fibro. i think that like me as you have so many med issues it all gets too hard for them. You need to find the right one not necessarily the top one to treat you. He sounds a bit arrogant. Good luck and stay strong, I know it is hard
My thoughts exactly, whenever I have had pain, anywhere, it's always "down to your Fibromyalgia". You get fed up with them all labelling you with this. He also said it could be diabetic neuropathy, but my GP dismissed this too. At first he was very nice and sympathetic especially when I went private for the ultra sound scan on my hands, but it's as if he's had enough of me now, because he can't give me a diagnosis or meds that work. Perhaps he had a bad day, but don't think so, he was quite different and very dismissive to everything I suggested.
Will take husband with me this time, even though he is not very confrontational, it's usually me who does the pushing, but just him being there may help the situation. Here's hoping anyway.
Jan
I can so relate to changeable GPs. Mine seem to swing with the weather and their workloads. I am same with husband too. I resolved never to let anyone tell me I had ME or Fibro a long time ago and told my GPs this fairly forcefully. Perhaps you need to get forceful about it all too. Never mind the merge (although I hope it improves things) this chap needs sorting asap. X
Will definitely be putting my foot down this time, we need answers now and if he can't give them then I need to see someone who can. I knew from the beginning of all this it had nothing to do with my Fibro as it was completely different and as you say Fibro isn't inflamatory.
Yep time to become challenging Jan - even some veiled threats to go to the practice manager with a complaint perhaps. Even if it turns out to be something to do with your diabetes it isn't normal to have hands that swollen. X
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