Here I go again

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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25 Replies

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  • Hi Titchij, I'm not that familiar with osteoarthritis ,but I do have osteoporosis due to steroids for Ephesema ,I also have Rheumetoid Arthrits,which I take Sulphasalazine which I find does the job. My opinion and believe me I've had a lot of bad experiences with the medical profestionals! Is they are pulling the wool over your eyes. Don't take any notice if your seeing the top man or not,if you need to have another opinion go for it. I've been told in the past with some of my health issues there's no more they could do for me,this was a life and death situation and if it hadn't been for my gobby son I would be dead now.

    Don't stand for being in pain and being told you can't have no more done for you,that's reddiculuse when your in pain,it don't even sound to me as though they even know what's wrong with you. Push stamp your feet and get what you deserve.

    Good luck and Take Care.

  • Thank you Gemini71, I will be pushing for some answers this time. Can't go on with the pain and swelling much longer.

    Take care

    Jan

  • Firstly, hope you can see him soon and that this time you get some real help.

    I have osteo arthritis in my hands and have found gently massaging them as often as possible helps. I also do some finger exercies to keep them mobile, I know sometimes it hurts but I find if I don't do them my fingers are even more stiff and painful.

    Each morning I soak them in warm water and when I am having a bad flare with them I soak them in a solution of warm water and Epsom salts.

    Don't ask me why it works but it certainly relieves some of the terrible pain. I also rub some Ibuleve gel into them as less is absorbed into the system so sometimes people who cannot normally tolerate antiflamatories find this is.okay. If the burning, hot feeling is intolerable another thing I try is freeze gel liberally rubbed in as it has a good cooling effect. Hope some tip at least helps you a little.x

  • Hi sorry you are hurting I have OA in knees wrist ant spondylitis in neck. I have just started taking magnesium with calcium at night for a better nights sleep, Flaxseed oil helps with inflammation which causes the pain, I have tried a long list of other herbs and vitamins that did not do anything, early days but feeling better hope it keeps up, hope they help you linda

  • Tks for reply Linda. I do use magnesium oil rubbed into my legs at night which does seem to help a bit if my legs are reaaly restless. Have to try and stay off any oil based remedies unfortunately as having IBS they upset me and alot of herbal remedies either make me nauseous or have clashed with prescribed meds. I sometimes feel I am between a rock and a hard place.x

  • Thanks rose wine for your tips, I do run the hot water over them first thing to get them moving and have tried the frozen gel packs, but my hands are so hot they melt too quickly, even when wrapped in a cloth. I have used the Epsom salts in the bath for my Fibro pains, but not for my hands so will try this. Cannot use any of the creams or gels as I'm so sensitive to these. I do try and keep them moving as much as I can, but they tend to lock at various times and the pain is very bad trying to move them. What is Freeze Gell? I have tried the Freeze Spray, which does nothing.

    Will try anything to see if it helps.

    Jan

  • Hi Jan

    It sounds as though your hands could keep the National Grid going the burning is an awful sensation just as though they are on fire. The free gel is the equivalent of the spray but in gel like form, I buy a quite cheap tub of it as I find it works just as good as the expensive ones. I first tried the spray but found firstly with my hands being so stiff I tended to spray everywhere but my hands and it didn;t really seem to absorb into the skin. I think with the gel the rubbing in also helps. It is awful when you are sensitve to the sprays and gels as I sometimes wonder whether they help more than some of the meds. I know the Pain Clinic tried me with that Capsicum for my legs and back and I thought someone was trying to barabacue me. They say that sensation slowly recedes but with me it just got worse the more I used it. Hope you find something to help.x

  • oh hun, it sounds like your having a really rough time. Have they checked you for systemic lupus? The symptoms you described sound like it maybe a possibility.

    There maybe some natural anti inflammitories that might help: ginger, turmeric and rosemary. Fennel has been shown to reduce pain and inflammation by inhibiting NF kappaB, it also significantly increases the activity of an anti oxidant known as super oxide dismutase, which contributes to lower levels of inflammation as well.

    Considerable research has linked NF kappaB to a variety of inflammatory diseases, including cancer, atherosclerosis, myocardial infarction, diabetes, allergy, asthma, arthritis and crohns disease.

    I usually drink fennel tea (with honey to sweeten) but you can get it in capsules, recommended dosage is 200mg/kg of body weight.

    I try to include a pinch of turmeric in most dishes, it doesn't have a strong taste but can be a big help it is a vasodilator, helps keep the small capillaries in the hands, feet, fingers and toes dilated and open.

    Don't be afraid to demand more from your gp - you deserve to know what is happening and to have some answers.

    I hope this helps, stay well.

    Amy.xx

  • Thank you both for replying, will certainly look into anything that may help. Will see what consultant has to say, then if nothing forthcoming from him I will try anything.

    Jan

  • If the Consultant says he can't do anymore for you, you need to tell him politely and firmly that staying as you are is not an option, (unfortunately this is how the NHS is these days) you must make it clear to him that although you value his experience and expertise you would like a complete review of your medical condition. Then ask him for an urgent referral to the pain clinic. There is always the possibility that he is right and he can do nothing for you, but the pain clinic will not be so hasty as to send you away without trying everything in their arsenal. Do you have someone to go with you ? Get in touch with the hospitals Patient Liaison Team and voice your concern to them as well. I wish you luck.

  • Hi thiskittybites, I have been to pain clinic they prescribed Duloxotine, took it for a week, it just made me throw up, dizzy and totally unable to do anything so had to give up one that one. I have tried most pain meds over the years for fibromyalgia and had the same reactions, nothing seems to suit, I am so intolerant to them. Just not sure what can be done now.

    Jan

  • One thing you can do temporarily for your hands is to wear gloves during the day and splints at night. They will help tremendously with the pain and ability to use your hands. I have used them for years. I sleep in splints and wear gloves all day long except for when I am using water such as taking a shower. They allow me to function with a minimum of pain.

  • Thanks Topwabbit, got the splints, which Physio said I didn't need, but still use them also wear the gloves, but find the heat in my palms get worse if I leave them on too long and they get very tight too and sweaty.

    Jan

  • Do you wear the gloves without fingers? They work best for me. There are also several fabrics that they can be made of that cause sweating more than others. I am also a very sweaty person. Perhaps a cornstarch powder on hands prior to putting them on would help keep you dry.

  • Yeh they are without the tips, I have tried talc, it does help, but I find them very tight when the swelling is really bad.

    Jan

  • Try cornstarch based powder, not talc. It absorbs moisture. Swelling is probably causing the tight feeling. Perhaps having gloves in two different sizes that you can change to when you experience tightness or swelling.

  • Thanks for that advice, will try it out. Good thinking on the glove sizes will ask OT about it. Hope you are good at the mo.

    Jan

  • Something else I thought of: I also use Topricin cream from Amazon.com, an over-the-counter pain relief cream that works very well, even as well as a compounded prescription med that I previously used but that got too expensive. It is all a matter of trial and error until you find just the right combo, hopefully without drugs. There are even some supplements that people like such as Sam-E and MSM. I also use meloxicam prescription NSAID that works very well with flexibility and movement.

  • Thank you will have a look at this, can't take NSAIDS due to my asthma.

    Jan

  • I also have had asthma since 1996. I am able to take this pill. It is one of the newer, more benign NSAIDS that actually works.

  • Thank you Topwabbit, I will ask consultant about the Meloxicam NSAID. I hope I will be able to have this and tolerate it.

    Jan

  • Get hold of the March edition of Scientific American and read:

    Shock Medicine

    Doctors may soon treat inflammatory and autoimmune

    disorders with electricity. By Kevin J. Tracey on page 28 of the magazine.

    Hope this proves useful.

  • Thanks Johnsmith, will look at this info, not quite sure about the electric shock treatment though.

    Jan

  • Hi Titchyj, I do have experience of arthritis, it runs in my family and I have had it diagnosed since in my thirties, so understand your frustration. If you have asthma then finding a drug to take can be complicated, I know from experience. However the rhuematologist should work with you or your GP , to find a solution. They do tend to ignore osteo arthritis unless it is severe and affecting major joints. Have they suggested capsicum cream, waxing, contacting Arthritis UK for advice, opiates as pain killers, gabapentin the latest pain relief tested, hand splints, hand physio, steroid injections into the joint, none of these cure but can give temporary pain respite. Even ice packs work as they take the inflammation away, some get relief by taking vitamin d tablets but doctor has to do a blood test before prescribing. Last resort is a pain clinic as there is no cure for osteo it is an ongoing chronic disease. Oh and as I know daily hand exercises are a must to limit the deterioration. If it remains a problem come back on here and ask away, many of us can support and understand your stress at the outcome. There are things that might help including herbal remedies but you have to work and try all till you find what's best for you and gives you maximum relief. best wishes you have a long journey ahead to get there.

  • Hello Katie, thank you for your dry informative reply. Yes your right the consultant and GP should be working together, not so in my case, GP will only go,by what the consultant says except he won't guve me steroid injections as I'm Diabetic. As for Opiates I am intolerant to these and any other strong pain med. tried Gabapentin for the Fibromyalgia and couldn't tolerate that either, had the hand wax which was very nice at the time, but short lived, I do some exercises to keep them moving, but can prove very painful, also the uce is ok, but melts so quickly due to the heat in my hands. Not been offered capsicum cream or herbal remedies so far. Tried everything else, got the splints and compression gloves from OT, been to pain clinic, they prescribed Duloxotine which I couldn't tolerate either, they had nothing else to offer.

    Just got my appointment for Rheumy which will be on the 16th April, will have to wait and see what he can come up with.

    Jan

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