Feeling so down with palindromic rheumatoid arthritis - help

snowdropping Member Posts: 10
edited 30. Jan 2017, 08:04 in Living with Arthritis archive
I don't know anyone who has ever even heard of palindromic rheumatism. People hear arthritis and think it's just a few 'achy joints'. PR flits all over your body indiscriminately and I find it really difficult to cope. I'm in such pain. I can't sleep properly. My life is really on hold since I was diagnosed with this shortly after having my first child.

It took a while for doctors to take me seriously and I basically had to Google and tell them what I thought I had, which was late confirmed by blood tests and eventually seeing the rheumatologist (he is brilliant)

I was put on hydroxicholriquine about a year after being diagnosed which seemed to work well but it's just completely stopped working. I've been flaring since November and it's the worst ever. I feel like I'm going to go mad. I wake up each day not knowing which part of my body will be sore. I can't sleep at night with pain. I'm a walking zombie during the day because of this. To top it all off, I'm a teacher and have an EXTREMELY difficult class this year, worst I've ever had and I really feel a bad day with the class is making my pain levels worse. This may all be coincidence though.
I feel I can't carry out the intensive written part of my job effectively since some days I can't even hold a pen, can't lift my arm to use the whiteboard and find organising art activities, PE equipment unbearable.

I went to the doctor last week to ask to be referred sooner than my usual 6 months to the rheumatologist as I'm so down with the pain, I'm in a really dark place. I asked for some stronger painkillers as naproxen don't even touch the sides if the pain. She gave me cocodamol. I'm not sure these are even helping at all.

Please can someone reply to me and help me feel I'm not alone.

I'm only 36, I feel too young to have a lifetime of this level of pain.

Sorry this is such a self indulgent post. So sorry for that.


  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    You say you have a good relationship with your Rheumatologist, it might be worth phoning his Secretary and asking if he has some space in his diary when he is doing a clinic sooner to fit you in? I'm lucky to have a good relationship with both my Rheumy and Orthopaedic Secretaries as I'm cheeky and phone them when I need an appointment moved!! You might be lucky and he will see you at the end of a clinic. :wink:
  • stickywicket
    stickywicket Member Posts: 27,416
    edited 30. Nov -1, 00:00
    Please don't apologise. We all get down with arthritis from time to time. Who wouldn't?

    It seems the hydroxychloroquine isn't currently holding back your disease. Your GP can only prescribe anti-inflammatories, such as naproxen and painkillers such as the cocodamol. You do need to see the rheumatologist for a stronger disease modifying med.

    The stress of your work will only make things worse. Maybe you should take some time off. When I was first diagnosed with RA I was doing o-levels and could only go in for the actual exams and only one per day. This disease can really bite.

    If you have a rheumatology helpline do call them. If not, just emphasise to your GP how urgent your rheumatology appointment is. Or, better still, call them yourself if you have access to a secretary. Some hospitals only have central appointments systems.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Oh dear, it sounds like you're in a really difficult place'

    Try not to despair, things will certainly get better, but it takes a while to get the right drugs in place, and the first step is to get in touch with your rheumy department....as others have said if there's a helpline get in touch asap.

    Like you I began with Palindromic rheumatism, and it took a long time to get a diagnosis, I now have rheumatoid arthritis, but both diseases are treated with the same kinds of drugs which slow the disease activity. Also like you I was a teacher when it first began, and the stress and demands of the job do make it worse.

    Things to try.....I found a hot bath helped sooth painful joints before bed and helped ease me into sleepiness, also a hot water bottle, or a warmed wheat pack that would wrap around the sorest parts provided some relief. Distraction therapy...enjoying a good book, chatting to folks who care about us, doing jigsaws or puzzles all help to take your mind off things.

    When I was teaching I was very open with colleagues about my issues, and most were happy to help where they could, with things like putting up displays, mounting work or cutting up paper, sharpening pencils for the little ones (I taught Early Years), or just making me a warm drink to wrap sore hands around for warmth! Also making sure I was well wrapped up when on playground duty so that sore hands didn't get too cold helped.

    Have you spoken to your head teacher? There may be facilities for Occupational Health to do a workplace assessment, this can be really supportive and encourage your employer to make changes that will support you...for instance I had an agreement that when things were particularly bad with my hands and wrists I would in-depth mark only one set of Literacy books each day and use a selection of comment stamps on the other books, including one which said "verbal feedback given"....this was explained to all those who did book trawls etc, including the ofsted inspectors who came in shortly before I retired!

    Most of all, try not to feel alone and isolated, this forum is a marvellous place to unload and find support and understanding, and the rheumy nurses at the hospital have always been nothing but kind and understanding in my experience. They may be able to offer you a short term steroid injection to bank down your inflammation, these work differently for different people, but I usually get a good few weeks of relief from them.

    Take care of yourself, let others help you, and don't feel guilty about what you can't do.........teaching is just one part of who you are, and things will improve once your disease is properly controlled.

    Deb xx
  • snowdropping
    snowdropping Member Posts: 10
    edited 30. Nov -1, 00:00
    Thanks for the supportive words, I really appreciate them. I think the middle of the night when having a flare up is the worst and most lonely feeling (which was when I posted my first message.)

    Just wondered if other people get a bit embarrassed by their condition? I hate the feeling of 'pity' and I know that's how people see me when I'm having a flare. The sight of my hobbling around school, with hot water bottles on inflammed areas and having to ask people to open milk cartons as I've no strength in my hands must be v depressing.

    I get uncomfortable and try to keep a low profile so I've never spoken to my head teacher about it. I'd worry if she got occupational health in they'd try to sack me. :|

    Another question, how will I know if and when my Palindromic progresses to RA?
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Snowdropping,
    in relation to work and speaking to your head about getting extra support you might find it very useful to read our large section on the website about working with arthritis. https://www.arthritiscare.org.uk/living-with-arthritis/working-with-arthritis it is worth bearing in mind that you have very clear rights under the disability discrimination act in relation to work and there is an expectation that employers will make reasonable adjustment.

    As regards knowing if you're palindromic arthritis has become rheumatoid arthritis, this would need to be a diagnosis given by your rheumatologist as a result of various tests that he would need to carry out. This would possibly include a blood test. If you are concerned that this may be the case it would be worth speaking to your consultant.
    Best Wishes
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Oh lovey ..you are not alone now..I really do feel for you being so young..and like you say a lot of people just dont understand..we at least understand the pain people can be in or at least some of it..Im so glad you have joined us..you talk away it really will help...x
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hello again,

    I can only speak from my own experience, but telling the head teacher was a positive step, and meeting Occ Health was also very positive in so far as they listened to all my concerns and made some positive suggestions, as a result of that meeting school agreed that I would no longer do an early morning playground duty because I was always stiffest in a morning and the cold made it worse. On their recommendation I was also given a better chair for my desk space with arms for more support, and some specific voice activated software for the computer to save typing when my hands were really bad.

    My rheumy consultant gave me leaflets to give to the head teacher to inform them about the disease (both Palindromic and RA), and the head found them really helpful in better understanding some of the challenges I faced, and the employers responsibilities in this context.

    I can understand that you might feel embarrassed to talk about your disease, but others will never understand the challenges you're coping with if they don't know about it.......maybe start by talking to one or two of the folks you feel most at ease with. I also told my class, in language they understood, that I had "poorly bones", so that when I wore my wrist splints etc they knew why....and I was amazed at how caring the little people were....they often offered to do simple things for me, including one little 5 year old who insisted on fastening my coat to help me!!!!

    As to when or if you'll get RA, everyone is different, and not all cases of Palindromic go on to become RA....I always expected that it would because my grandmother had suffered hugely with RA all through my childhood, so that when I began to get joint issues I guessed that this was what I had.....for me the diagnosis of RA came several years after I was diagnosed with Palindromic, and that diagnosis came after I had seen my doctor over a period of 2 years with randomly swollen hot and painful hands/wrists/knees/elbows, but all the blood tests came back negative because I have seronegative RA.

    I hope you have a calm weekend and get chance to rest your sore joints.

    Deb x
  • snowdropping
    snowdropping Member Posts: 10
    edited 30. Nov -1, 00:00
    You are all very kind, informative and best of all understanding! This is a great forum to have found.

    Maybe I will look into the occupational health thing. There is one thing they may support me with and that's the insistence that all our notes and plans and school evaluations are handwritten as it 'looks better' for the inspectors. It's much easier to type with one hand than to try and write with my left hand if I'm having a flare in my right, writing hand. I've tried to explain to work that I'd rather type all the documents but they aren't happy about it at all. As people with arthritis know, a hand flare isn't just a sore hand, it's exceutiating pain and for me, I completely lose power in my hand and can't open or close it. I get very, very embarrassed by this.

    Regarding medication, I wrote on another thread about possibly starting methotrexate as the hydroxychloroquine doesn't seem to be working. What pain killers could the rheumatologist give me that the doctor can't? The GP gave me the middle strength Cocodamol. They aren't strong enough. I just need something to dull the pain enough to allow me to get through th day without having to cry in my store!

    As anyone with Palindromic knows, flares are horrific and then it all disappear so I think I'm going crazy and imagined the whole thing. :shock: :(:cry:
  • stickywicket
    stickywicket Member Posts: 27,416
    edited 30. Nov -1, 00:00
    I've never had pain relief prescribed by my rheumatologist, only by the GP. GPs can prescribe stronger pain relief than that you're currently taking but (a)there is a balance to be achieved between relieving the symptoms and keeping a clear head and (b)Pain relief only tackles the symptoms not the disease so whatever you take for pain, you'll still need the meth.
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00

    I feel for you. As someone who also works in a school, I know how difficult the educational environment can be when you're not 100%. One thing I have found however, is that being upfront and honest about your condition makes life much easier.

    I've had RA for 10 years now. I mention it at interview when I go for a new job and sometimes that results in an occupational health assessment. I find that senior colleagues tend to ignore the disease unless I say I'm struggling, then they ask how they can help with it. There is rarely any pity from them - I do a good job when I'm well and it is pointless working myself into the ground when I'm not. People respond well to someone who keeps trying and is willing to put in the time and effort. If they can see that, you are much more likely to get a positive response when you ask for help.

    Having an arthritis is embarrassing. I fall on a regular basis (am very surprised I don't have a personal risk assessment!) and have been to work wearing all manner of splints, walking sticks etc. Getting some of your colleagues onside helps: do you have a TA who would help with the writing? Asking for help is never easy - I still struggle with it. You can ask in lots of different ways. Are you able to swap some duties with another member of staff so you can focus more on bits you are able to do?

    With regard the medication, it sounds like you need to see your rheumatologist. What strength cocodamol do you have? It might be worth going back to the GP and asking for separate codeine and paracetamol scripts as you can then control the dose of both individually. Are you still taking the naproxen with it?

    I hope things improve for you soon.
  • Rach101
    Rach101 Member Posts: 165
    edited 30. Nov -1, 00:00
    Hi Snowdropping,
    Really sorry to hear you're having such a bad time of it. You've already had good advice from others so I won't repeat it but I do think that occupational health may really be able to help you manage better at work, it sounds like you need some reasonable adjustments in place to help you. Typing your notes sounds a very good place to start, I also struggle to hold a pen and write so can't imagine having to do so on a regular basis.
    You are not alone, I'm 40 and was 'struck down' by spondyloarthritis 9 months ago, it's been a huge shock and I've gone through phases where I just cry all the time, I've learned that I just have to be kind to myself during those times.
    I really hope you get some effective treatment from your rheumatologist and that things improve for you soon.
    Take care Rach xx