So........ what now?

Four and a half years ago, I started going to see my GP every few weeks with a pain here, a pain there, swelling here and discomfort there. I finally saw a consultant who told me I had seronegative RA. 'Thank goodness!' I said - I thought I was crazy!

Combination therapy didn't really touch it, and a year later and more symptoms - I was on Anti-TNF - Cimzia.

A year later, and even more symptoms I was diagnosed with having Fibromyalgia - no cure, but anti-depressents help.

My condition is very up and down - my bloods are messy and although I can have a few days of 'good' I end up with months of 'yuk' days - there is no rhyme or reason and my symptoms don't match how I feel!

Yesterday I had an appointment with my Rheumy nurse - I have been have a rough time and I had made a decision to come off the cimzia as I hate needles (I can cope with the methoject!) and to be honest it didn't help.

After chatting about how I felt and how long I have been suffering (not as long as some, I know!) it turns out that I have Osteo-Arthritis in my fingers, but as to my other symptoms the nurse held her hands up and said 'I just don't know whats wrong with you? You seem to be hard to diagnose. I don't know what to suggest!' At which point - feeling like a lost cause - I cried.

I am physically and emotionally exhausted and hurt!

I have an appointment to see my Consultant next Thursday - but I feel my frustration may come out as I know I have not been fully informed of everything - even though I ask loads of questions, I record my good and bad days, and do everything I am told.

Has anyone else experienced this?

To be honest I am scared which is not helping I know - but also, just what to know whats going on.

Thank you for reading - hope the sunshine is helping you all x :)

27 Replies

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  • Thank you so much - we have helped eachother, and will continue to do so I hope! I'm just feeling sorry for myself, I just have to stop worrying, it doesn't help me!! xx

  • It's taken about the same length of time for me to have a definite diagnosis, Originally the Rheumy suggested that my pains were due to the menopause so should settle down eventually, my bloods always came back as negative.

    He has been treating me with Hydroxy; Sulpha & then introduced MTX.

    Eventually a hand scan last September showed that I had both OA & RA in my hands. So although I was disappointed that I had the disease it proved that I was telling the truth!

    I feel now that I'm getting some active treatment.

  • Hi Pauline - Im pleased things are working, and continue to do so! take care and thank you for taking the time to comment! :)

  • Me too, three years now but got a working diagnosis last month, see Rheumy tomorrow and will be upset if nothing's done x

  • Oh no! How is this aloowed to happen - I know its difficult to diagnose, but years of not knowing is so annoying x Hope your appointment went ok today - let me know! x

  • Hello

    I have had my type of RA now for thirty years, it never gets any easier, and I suffer from Reactive Depression. the only thing I can suggest is learn how to live with the condition.

    We all seem to go through a grieving process that seems to upset people as they do not know what a life sentence RA becomes.

    One of the problems I have and not really got my head around is the the types of drugs me are supposed to take and the toxic effects that they subject the body to. The amount of strong pain killers, I worry here as I am sixty three and understand my body now can take such high doses that when I was in hospital for operations the dose of opiates that they were giving me were not touching the sides to clear the pain, and they were concerned to increase the dose for me. Now I wonder what will happen when I start getting problems as we all will. What sort of medication levels will they need to keep the pain suppressed.in those final years/months/weeks. will we be writhing in pain, especially if we are treated in palliative care. Yes I know it is wrong to think of that final period, it still gives me the willies.

    I can never understand the reason people become addicted by taking black medications.

    BOB

  • Hi. Bob, what do you mean by " black medications"

    Thanks

    P

  • Hello Poppy

    ILLEGAL, I could not remember the word I wanted too use

    All the best

    BOB

  • Hi Bob just wondering if you have had any bad symptoms from all the drugs?

  • Yes the DMARD type medications can have severe effects on my immune system and many different problems associated with their taking

    It took a long time to get me on the right medications, for NSID and pain control, I am very critical on how many I take so my dose regimes are very strict

    Still suffer a great deal of pain and tiredness associated with RA type conditions., just like everyone else

    BOB

  • Hi Bob, Thank you for sharing this with me - I know we all suffer in our way, but I do worry to about the future - I am 45 but as my husband says I walk like his dad who's 80!! I do try to live for today - but I wonder how long I will be able to dress myself, brush my hair etc - my family already tie my shoes and put my socks on - as for pain killers, I am allergic to most and I think thats one of my hardest problems!

    Anyway, thank you, take care :)

  • My hugs for you my dear. When you go to see your consultant take someone with you. They can take takes if nothing else. Also take a recorder if it helps you to remember what they say to you. Write down everything that has happened,eg; what pain and where and how your pain is. What the weather is like,this might give them a better idea of what is wrong with you. It might be osteo-arthiritus or it could be RA. I hopoe these things will help you,hugs from me to you.xxxx

  • Hi Sylvi,

    This is a good idea. Just remember that recording must always be done with the consent of the person being recorded.

    Beverley

    (NRAS Helpline)

  • Hi Sylvi, my hubby is coming with me - he was there on Wednesday and was appauled at the insensitive way the nurse spoke to me - he is on a mission to make sure we understand everything that is said - I make notes all the time and record certain things on good and bad days. I also put a face in my diary every day - be it happy :) or sad :( and then I have one that has two eyes and a wiggly mouth - for not too bad!!!

    Thank you for your care xx :)

  • Hi its not good that our specialists make us upset, they should be a support to us.

    I can understand your frustration with them not being able to tell you what is going on, I am in a similar situation and been having tests for 16months now and got no where but none of the doctors particually care just fob me off. I think we need to stand our ground. wishing you well.

  • They do fob us off, suggest drugs and leave us for 3 months! I will be standing my ground - will probably cry at the frustration I feel but would just like honest straight answers - wishing you well too :)

  • Not making light of any thing but I think of bob as the sensible patriarch of this board and he has just mentioned illegal dtugs and said willies. Made me chuckle xxx

    Wishing you lots of strength. Its a horrid road we hobble along xx

  • I love this! I didn't want to mention this but maybe a giggle is just the medicine we need!! Thank you for your message! wishing you well too!!

  • Why are the doctors looking for one thing? Isn't it possible to have oa, RA and other variations. I'd challenge the idea of one simple diagnosis.

  • Funny you saying this - my husband said the the same thing! They have been squeezing my fingers for the last 4 years looking for fluid - funny they have never found any, just extra bone growth - I just hope they look at the bigger picture!!

  • Your condition sounds rather like mine. The "provisional" diagnosis I have after about 35 years is sero-negative inflammatory arthritis possibly RA with secondary osteo-arthritis and polymyalgic symptoms! When I started they just labeled it RA.

    i think that we just have to accept that we have a long term health condition that affects our joints, muscles and a few other bits (I get uticaria and occasional problems with my blood vessels as well). The actual label doesn't matter much, but what does matter is that we make it clear to the health professionals what and how we are suffering and ask for help with managing that.

  • Hi, old timer. I have a similar condition to you. Just out of interest, what drugs are you on? Anne x

  • After trying almost everything from gold to methotrexate, I'm now on azothiaprine & maintenance steroids (plus the usual non-steroidals & pain relief)

  • PJ .. I feel sure after your Consultant appointment you will feel better. It is a good idea to take someone with you if you feel you will be emotional (and nothing wrong with that ... it is often frustration too which makes us cry) If the rheumy nurse said .. I don't know what to do with you .... even as good or as nice as she as . my thinking would be ... but I bet the Rheumatologist does! These people have such fantastic knowledge and experience and they aren't at the top of their tree for nothing. This isn't disrespectful to the nurses as I have a couple of fab ones in Rheumatology but they are the first to admit when the Rheumy needs to be involved etc and when their own knowledge is limited if you ask something. However I have been seeing my Rheumy and not the nurse for my consultations/reviews due to my very difficult RA. Good luck on Thursday. Oldtimer (even though she looks young!!) seems to have very similar problems and it is true ... the actual label doesn't matter much but the management does. Hoping for much better times soon Julie x

  • Yes - I do agree - a label doesn't matter, but the management does - I just worry about the drug I am putting in me and the long term effects, but yes roll on Thursday - I will let you all know how I get on!! Thank you for your comments xx

  • But as many have said ... it is as worrying not to be taking anything and letting the arthritis/fibro etc make you very unwell. Good idea to take your hubby next week. Good luck. Let us know. xx

  • If DMARDs didn't work, and if Cimzia didn't work, then I'd ask if there is any possibility of a different sort of inflammatory arthritis like PsA or another form of spondyloarthritis - because DMARDs generally don't work at all well for spondy and Cimzia isn't one of the approved meds (i.e. ones shown to work well) for it either - and spondy is a seronegative arthriis so that part fits.

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