Does it ever get Better!

So fed up with the constant changes this wretched RA gives, it never stops giving! More and more Pains stiffness misery, it just never stops! Had Knee aspirated last week due to another Bakers Cyst, another minor steroid injection, so no honeymoon there....keep taking the Sulfasalazine Liquid Suspension, seems to be doing nothing, forth week in, have to have low doses due to Hyoersensitivty to drugs! No real pain relief due to the never ending reactions, so only have Paracetamols to help! Does anyone out there have any ideas what I can do! Have Pain Management appointment on the 2nd December, and Rheumy appointment on the 16th. Feeling like I can't keep coping with the never ending Pain, life has become so restricted! I have only been diagnosed since April this year and am new to all the treatments, so frustrated, as I was so active before despite having Peripheral Neuropathy in my legs for the past 8 years. Any Advice would be welcome, Thank you x

8 Replies

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  • Sulpha can take 3 months or so to start working, so it's early days for you - sorry. When I first started on it my digestive system protested and I had several months of extreme embarrassment - I certainly couldn't eat anything outside the house! However that wore off and it has helped the RA so try to be patient which I know is hard.

    Have you tried all the non-chemical things for pain relief? Heat packs, ice, TENS machines, body pillows, support gloves/socks and so on? They can help a bit, and I find them useful as they take the edge of things enough that you can get to sleep.

  • Sorry you are struggling so much with pain. I am presently in a similar boat to you after five years of trying drugs and having severe reactions to them.

    I think what helps me most is some form of escapism - reading books with strong storylines, listening to music I can sing along to and watching films and Nordic noir series all distract a little. Also being as creative as I can when I can find the energy helps as I'm an artist. Volunteering for several organisations has given me a broader focus.

    Like you I'm only able to tolerate paracetamol and my pain is very widespread now and affects my nerves and tendons more than my joints these days. I haven't tried any of the things Helix has suggested for it yet but at night I find that having extra soft pillows to rest my limbs on helps. Epsom salts and turmeric have been recommended but again I haven't tried them yet. I think it's important to be methodical with all medications and supplements so that you know what's actually helping.

    I admit that recently I've woken in awful pain in the early hours and just taken whatever comes to hand - sometimes just gone for Tramadol, codeine, sleeping pills etc out of sheer desperation. Then I've been very ill the following day. Not good. I'm now trying to make sure I have appropriate pain relief at hand and soothing water sprays and creams to cool down my burning extremities. During the day I wear layers and have gloves and thick socks and supportive footwear because I get so cold and temperature changes act as triggers for me so keeping myself comfortable is extra important.

    I try to walk everyday and have a rest in the afternoons whenever possible. It's harder presently because I'm so stiff, sore and exhausted, off all DMARDs and facing lots of uncertainty about what happens next and even unsure whether my original diagnosis of RA still stands. But a walk with the dogs on the beach today lifted me out of severe gloom so it's always worth pushing myself to get the endorphins going. In fact the most important things of all for me are fresh air and exercise - even if it's hobbling at a snail's pace or gentle stretching of tai chi or yoga. My dogs are pretty good at cheering me up too with canine cuddles and amusement at their antics.

    I hope you find your own ways of getting through all this pain and malaise - it is horrible being in pain all the time and not tolerating drugs - you have all my sympathy.

  • It sounds as if you need to give it a little longer to work. In the meantime, you could try Pernaton Green Lipped Mussel extract. It's not a cure, but I find it soothing and it gives some temporary relief.

    If you can't tolerate Methotrexate, it sounds as if you would tolerate for Biological treatment, such as Enbrel. You might be hypersensitive to that too, but it would be worth discussing with your consultant. J

  • I'd second trying Pernaton, in fact it was after Jo first told us about it that I got some mainly because my h has got through CABG followed by sternal dehiscence due to the wires failing & chest wall reconstruction with only regular paracetamol for pain. It was particularly helpful for the tendonitis in his shoulder due to 4 hours lying on it in theatre, it dislocates anyway so has been very painful. His GP did give him a Depo-Medrone injection into the joint which helped but he reacted to the lidocaine. Pernaton isn't contraindicated with meds, I checked with our Pharmacist.

    I see two positives in your post, you have a Rheumy appointment soon & a Pain Clinic appointment, hopefully both will be productive. As has already been said you're not long into trying SSZ so may not be feeling any benefit from that yet, & may take a little longer due to your low dose but as long as you make clear your concerns your Rheumy should empathise & give you some reassurance, even share with you his/her plans for future treatment with you, if not ask! You need to have an idea of your options being so intolerant to traditional early treatment. The Pain Clinic will probably suggest you try pain relief first so you need to ensure you detail how you sensitive you are to them & ask if you can jump straight to non drud methods. Alternatively, do you think you could tolerate pain relief in liquid form? If you do it might be worth asking if you could try that first.

    I know it probably doesn't feel like it but you're not alone, undermedicated RD hurts. If it helps just talk, pop on here & have a rant. Oh & keep warm, it's getting chilly. :)

  • Thank you all for your comments/advice have been getting outside a bit more and carry on with daily life as much as I can, I'm a mum so I can't just stop functioning! Just wish the pain would ease up a bit. It's so good with Depo Medrol injections, it goes right off, and I feel so good, almost back to normality, Barr the rotten Ocular Migraines I get with it....trade off every time. Have been having CBT for the past few weeks because of my loss of Confidence and Self esteem, as the RA has caused me weight loss and as I'm only a twig normally I have become really anxious and upset by it, to the point where I worry about it constantly. But have taken action by keeping a food diary and checking out my calorie intake, but try not to obsessive over it! I'm tall anyway, at 5'8 but really small boned. My Rheumy don't seem bothered, just keep saying its part of the course, and will improve with treatment! I do everything I can to eat well, sleep well, exercise when pain permits! I will take on board all of your replays, thank you all for taking your time to share your experiences and wisdom. I am very grateful to you All. I hope you are all having a good weekend. X

  • Unfortunately it does take time at the beginning - finding which medication will work best for you (and they mostly take several weeks at least before you get any sign one way or the other) It is not easy.

    BUT IT WILL NOT ALWAYS BE LIKE THIS

    Yes, there are really bad times, but there will be lots of times of remission, you will learn to read your body, accept some limitations maybe, but you will cope and you will cope well. Having children is wonderful - get them on side to help you as soon as they are of an age when they can understand. Both my two grew into very kind, understanding and capable adults (they could both do the ironing, hoovering and cook a meal by age 12!)

    PS if you ever find a way to put on weight I'd love to hear it - I struggle to keep over 6 stone!!

    Wishing you good times to come xx

  • Thank you for your kind words, have had a really bad day today! Feel like just giving up completely..cannot stand the Pain the Misery and most of all being trapped inside a body that is against me now! Have. Not been able to eat at all today due to the SSZ making my stomach so bad....just really hate my life right now. most of all Hate Myself! More. Feel like my Rheumy are just useless just fob me off all the time, think I'm a moaner...sorry sound awfully ungrateful I'm not just frustrated to keep losing so many days of my life to this cruel RA. X

  • Hey!!! Go easy on yourself - that's the great thing about this site - we've ALL been where you are, we all understand - and I don't believe there is anyone with RA who doesn't moan at least occasionally (ok, in my case, lots!!).

    Does your rheumatology department have a helpline or a rheumy nurse you can talk to? If you have been finding the doc unsympathetic is there a different one you could see? (When i arrive in clinic I always ask to see one doc in particular if at all possible as not only have I got to know and trust him but it makes sense to have the continuity.)

    Remember, they are there to help you.

    I find making a list of concerns before attending clinic is always useful - your biggest worry at the top in case time is short! The doc will at least pick up that you are "being positive" which should kick start a positive response on his/her part.

    When you feel like this, just think what you would do if it was someone else suffering as you are (one of the children or a dear friend or partner for example)

    I bet you would give them a big hug, spoil them rotten with warm blankets/chocolate/favourite book/dvd and soothing words of encouragement etc - am I right???! WELL. YOU deserve the same. cut yourself some slack. Have a "duvet day", you deserve it.

    I have tried hating myself, getting angry, screaming at myself (when nobody's there!) crying in frustration and self pity - but I have also (it took me years!) learned that actually it does no harm to sometimes say "hey - you know what, I'm taking some time out today" - and the next day I feel, if not always physically better, at least emotionally better.

    Once your emotions are in the right place you will then have the strength to "be positive" as we all know we should. Easy said!!

    So - don't fight it, just for today, take a duvet day! (Though be careful - after a week of duvet days family and friends tolerance may wear thin!!!!)

    There is light at the end of the tunnel - you'll get there!!

    xx

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