My world tipped upside down

Hi i was diagnosed with rheumatoid arthritis 4 years ago, and at first was in lots of pain and didnt have a clue what was happening to me as i was never ill with anything, i was still at work and my hands became so swollen i could not use them, then when they finally found the cause i was put on methrotrexate, and hydroxychloroquine, and a few steroid jabs, and for the last 3 years everything was ok, just the odd flare, but was able to do my job and often worked 60 hours a week, but in the last 6 months i am having flare after flare, and as a result have not been to my job for the last 5 months, but when i have blood tests everything comes back as normal, and have had my last 2 nurse appointments cancelled as the specialist nurse has been ill or on hols, my GP has not got much idea, apart from give me pain relief and now have gone into my own little world of pain, i know there are lots of people out there with this illness, but no-one i know has it, so seem to feel sometimes i am in this on my own, then i discovered this site so will see what info i can find on here, and will look forward to hearing from anyone on the subject, Thanks any input welcome.

20 Replies

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  • I really feel for you at this time.first you should ask your G P if he can arrange an urgent appointment with your rheumatologist as your medication may need to be reviewed.

  • I find arnica gel by a company called SBC very soothing,you can buy it online from various sellers.you may need wrist splints at night but you really need to see your rheumatologist.

  • Join your local RAS group for information and mutual support. Sounds like you might benefit?

  • Ahh bless you .love. think we.ve all been there. You do need to see someone soon .splints i find are too restricting of a night .but good for work .arthritic gloves from amazon are really helpfull to sleep in but make sure you have the right size.should fit snuggly .take care .kathy x

  • It may very well be that the effect of mtx is wearing off and that you would need something else? Unfortunately this is how it is with the meds, it is quite individual how long they work. Seems like you been working very hard too. Stress is one thing that makes RA worse. Take care.

  • Yes, it can make us feel very alone with this wretched disease. Unless you are a sufferer I guess it's hard to understand our pain and disabilities. Certainly in my circle of friends/family there is little understanding.

    Like you my GP doesn't have much advice, always refers me back to Rheumatologist but it's pretty ghastly where I live getting seen between appointments, even my rheumy nurse is pretty much unavailable. I think you need to make a fuss to be seen by rheumy or nurse, so keep asking !! I find sending a picture of affected joints via iPad helps. Have you had a steroid jab ?? Certainly helps during a flare. Xx

  • Hiya Lyndylou, and thank you for your reply, yes i think there is very little understanding from friends and family, although i live alone so not always in contact with my family and choose the (i will just get on with it on my own) and yes as you stated the gp is clueless so just refers me back to the clinic, but my last consultants appointment was cancelled, 6 months ago, then my specialist nurse appointment was cancelled, then i asked the nurses who take my blood samples could i see someone as i was in lots of pain, only to be told there is nothing we can do as the specialist nurse is ill and i would have to wait, or go and see my gp, ha ha, then an appointment letter came, so i attended only to be told its been cancelled and someone forgot to let me know, and they will send me a new letter in due course,, ( i did keep calm throughout) but don't know how, so that leaves me with low confidence in the people that are supposed to be treating me.

  • I've been told that rheumatology is struggling across U.K. And there is a shortage of consultants and rheumy nurses. Can you transfer elsewhere maybe as the service is patchy across the country. Might be worth travelling elsewhere. You can look on line and check waiting times etc at hospitals. I'm not sure where you live, but some of the best clinics seem to be in the larger hospitals. Where I live, our rheumatology service has deteriorated greatly. I know that I should make the move somewhere else, but travelling is so difficult for me as I'm now using wheelchair mostly and my sight affected greatly also. If you tell us where you live I'm sure that the fab members of our group will be able to suggest alternatives for you. X

  • Hi i live in preston lancashire, and have been under the same one since i moved here two years ago, before that i was in the fylde one at lytham st annes, and was forced to change as they told me that preston cannot forward my blood results to the fylde clinic and vice versa,

    you sound like you are really having a bad time with it, and am pretty sure you must be in much more pain than me with all that going on, and hope you too get sorted out one way or another.

  • I do know your pain. My experience has been dismal. Meth destroyed my life and I lost my job. For some reason they did not like me taking 2 naps a day! If only they knew how hard it was just to come to work. Now my 45 year career of teaching art is over. I am too weary to do a full day of work. After ending up in the ER, morphine and 40 mg of prednisone later, I quit taking the Meth. Now I am on Arava. I just stopped taking it because my hair loss is so severe, I got horribly depressed. The rheumy doc thinks I am silly. I told her to shave her head and look me in the eye and tell me it does not bother her. She was appalled. She has no idea of what is is like on this side of the toxins she prescribes. Make no mistake, they call them meds but what it is is poison. I am sorry you are going through this. I feel your pain. Challenge your doctors. They are only guessing at what may help you. It is like Russian roulette with your body. I am not a gambler. They think they are gods. They are not. Good luck. Keep reading. Especially about food additives. I am very limited to what I can eat without going into a flare. Msg and soy are big culprits. Preservatives are toxic to us.

  • Wow, you have not had a good time with it all, but even though you have been through all that, i can see you have a great sense of humor as i was laughing once or twice while reading, i was the same when it all came on, my hands were so swollen that i though the skin was going to tear, while i was at work, i went to a chemist for some pain killers, and he looked at me and said " are you stupid! you have obviously broke bones in your hands and need to get to the A&E" so i ignored him, but ended up in the A&E at 3am following morning, by which time my arms had stopped working, so they cut my jumper off and give me morphine, did blood tests and bang i was diagnosed with this horrible illness, but as for hair loss, its never going to happen to me, as i have bph or enlarged prostate, and the medication for that is finasteride, and take 10mgs a day, that drug is also known as (re-gain) for hairloss, for which they prescribe 0.5mgs and it grows hair back even at such low doses so being as i am taking 20 times that, i cant see that happening any time soon, plus i am at the barbers every week as it grows so fast, so if your worried about going bald,,, which i never even thought about before, and yes i agree i would not want to, deffo not! go and tell your GP you think you prostate is acting up, and you could be the next bigfoot.

  • Well done you. They have no idea when they prescribe these things. My consultant was okay but the nurses very dismissive of side effects.

  • Hiya CN & welcome, though I'm sorry you've had need to search us out. It does sound as though you're not doing well at all. I do wonder why when your 2 nurse appointments were cancelled they weren't reappointed, seems odd. With Rheumatology being a specialist field it is true that unless your GP has a special interest in it they generally don't know an awful lot about the disease. That said if they've signed a shared care agreement they should be adequately informed about your condition, take responsibility for not only prescribing but also to monitoring, side effects & interactions & prescribing of your meds. I'm fortunate, I live where you used to & my GP has a far greater idea of my conditions since my previous GP retired & I changed to her. She did a great deal of research to be informed & to say she has many patients I'm impressed, if she does the same for any others under specialist care.

    I would make an appointment with your GP, explain that pain relief does nothing to manage the disease & you really need an urgent appointment with your Rheumy (not nurse unless he/she is a prescribing nurse specialist).

    I hope you find it helpful being here, we've lots of experience to share so if you've any other concerns do ask, we're not easily shocked!

    As a matter of interest do you attend the Minerva Centre?

  • Hi Nomoreheels, yes it is the minerva centre. but i moved to preston from hambleton, so everything got changed about, and i was giving blood samples in preston and was still under the fylde rheumatology unit at the victoria hospital, and my doctor said he could not retrieve blood results so i had to change,

    But i can understand why people are ignorant to the illness, because before i got it i didnt know anything about it, and thought it was an old biddies illness, and thought everyone eventually got it as it was worn out joints because folk live longer these days, (how wrong i was) so how far down the treatment line are you? and how has it affected your life?

  • We've another member here who attends the Minerva who I'm sure will be along to compare & share experience if needed. Actually I've considered asking to be referred there but not decided with the extra travelling if it would be the right thing to do. Also when I was considering it I'd been having rubbishy care at hospital but then I had a good Registrar who has since moved on but last time I had an even better one so I've not pursued it, yet. Nurse care may be the decider if that doesn't improve!

    It is a problem, one health authority not being able to co-operate with another but I'm afraid that's as it is.

    Your knowledge of the disease pre diagnosis is the majority's I'm afraid & why many of us now choose to call it RD (Rheumatoid Disease), it stops the comparing of joint troubles because as you know many more of a certain age have OA. I have both & wouldn't wish either on anyone because both can be blinkin painful when not controlled.

    I was diagnosed in 2008 in Spain where treatment was quite different. It's affected my life I can't lie but whether it was because i saw my Consultant more regularly, I was younger or the lifestyle but I was far better controlled there. I'm sure the climate helped too, except that is for humidity & cold winters but less rain also helped, so good & bad really, it's all relative. I'm on methotrexate (8 years) & leflunomide (5 months) but also been on hydroxychloroquine & sulfasalazine. I'm also on low dose maintenance steroids & the usual NSAIDs, pain relief etc for OA. Enough to be going on with. ☺️

  • Perhaps the time has come not to keep quite so calm throughout when you are being messed about like this? Which is not to say you should get rude or aggressive, but polite persistence and stubbornness can work. Sadly it's often true that those who shout loudest are heard.

    You need to nag GP, contact the PALs service at your hospital, keep phoning the rheumatology service - basically constant reminders that you are there so they get fed up and deal with your appointments.

    It does sound as if the meds you are on have maybe stopped working for you, which can happen. I've been on MTX for 6 years now, and it's my fear that one day it will just stop being effective.... I do still flare from time to time, but I haven naturally low inflammation markers so my ESR goes up to maybe 9 or 10 and the doctors just laugh at me and say that's normal! It's only when I produce my graph of my levels over last 6 years that they can see that it isn't as I'm normally 2. So it's not just about the blood results how you feel is just as important and they should listen to you.

    If you do manage to get through to someone ask to have an ultrasound on your most painful joints, as that should show up inflammation even if blood says no. My new rheumy checks joints at every appointment now which is just brilliant.

    I often refer to this as a self-service disease. Sadly you have to do a lot of the running to get proper treatment....

  • Comfotambly numb I understand where you are coming from this is a great site but do. your own research and stay positive

  • When my pain was at its worst, difficulty climbing stairs, I took diclofenac /voltaren (nsaid) 75mg SR. this is not a long term remedy obviously but it helps to get out of the cycle of severe pain for me.

  • I am prescribed tramadol or co-codamol, 500-30 and the tramadol work when i take them but i lose lots of weight because for some reason when i take them i just stop eating and can go 4 days without a meal, but i am in the clinic in the morning for a blood test and being as both shoulders, both elbows, right thumb, both knees and my ribs are very painful and swollen i would imagine my CPR will be very high so they will have to contact me then and do something for it, on saturday i got up at 8 am and could not get down the stairs till 11:30 so am sleeping on the settee now just so that does not happen again, but on the bright side it will pass and know that we have to experience the bad in order to appreciate the good.

  • I have had ra for 19 years, i have been on humira and methotrexate for the last 10 years. last summer my flares were like you said flare after flare. It has been 8 months since things took a turn. I now have drug induced lupus from the humira and have to give it about 3 months to get out of my system. Like you i came across this website hoping to get answers. good luck and keep us posted on your health.

    p.s. l like the "comfortably numb" Pink Floyd fan too!

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