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Hello - I'm a new member

clairefrances17clairefrances17 Posts: 10
edited 19. Sep 2018, 05:43 in Say Hello Archive
Hello, I'm a new member to the forum.

I have had arthritis in both knees for some years and last summer suffered reactive post viral inflammatory arthritis and pleurisy and was quite poorly for a couple of months. Rheumatology have told me I have osteoarthritis.

I am currently having a flare up with painful knees, hands, feet, weakness in the muscles in thighs and arms, fatigue and generally feeling unwell which started around third week of August.

I wondered if anyone has had this and if flare ups are normal with osteoarthritis as I feel a bit puzzled by it all. I am waiting to go back to Rheumatology, but it can be a long wait.

All the very best.
Claire

Comments

  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Hello Claire and welcome to the forums from the moderation team.

    I am very sorry to hear about the pain you are clearly in. You sound as though you doubt the diagnosis of Osteoarthritis is this perhaps as the symptoms are similar to those when you had Post Viral Arthritis before? Is the Rheumatology appointment a follow up one or did your GP refer you again? If not a chat with him/her might speed up your wait.

    We have a great community here, with lots of experience of arthritis who I know will make you very welcome and help in any way they can, but in the meantime I hope the following might be of interest:

    https://www.arthritisresearchuk.org/arthritis-information/conditions/osteoarthritis.aspx

    It could be worth a read prior to your rheumatology appointment so that you feel ready to discuss your concerns.


    Please do let us know how you get on.


    Best wishes

    Ellen.
  • clairefrances17clairefrances17 Posts: 10
    edited 30. Nov -1, 00:00
    Hello Ellen and many thanks for your reply and for the link to arthritis research.

    Since creating a profile I have been reading posts from the forum and they are so very helpful, I am learning so much more.

    My Rheumatologist appointment is a follow up as I've seen her three times now since last summer's first illness. I'm hoping she will confirm that this flare up is normal part of things, the second one so far this year, and then I will know what to expect and hopefully learn the best ways to deal with it.

    very best wishes
    Claire




    moderator wrote:
    Hello Claire and welcome to the forums from the moderation team.

    I am very sorry to hear about the pain you are clearly in. You sound as though you doubt the diagnosis of Osteoarthritis is this perhaps as the symptoms are similar to those when you had Post Viral Arthritis before? Is the Rheumatology appointment a follow up one or did your GP refer you again? If not a chat with him/her might speed up your wait.

    We have a great community here, with lots of experience of arthritis who I know will make you very welcome and help in any way they can, but in the meantime I hope the following might be of interest:

    https://www.arthritisresearchuk.org/arthritis-information/conditions/osteoarthritis.aspx

    It could be worth a read prior to your rheumatology appointment so that you feel ready to discuss your concerns.


    Please do let us know how you get on.


    Best wishes

    Ellen.
  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Claire and welcome from me too.

    I have RA which led to OA because the proper disease modifying meds (DMARDS) weren't available back then.

    To me - and remember I'm only a patient - the symptoms you're describing sound more likely to be connected to the post- viral inflammatory arthritis than the OA. I find OA relatively uncomplicated in that it hurts and it hurts more if I overdo things but the fatigue and 'general unwellness' are things I associate more with my RA.

    Your rheumatologist has told you you have OA but normally that would mean you being passed back to your GP for treatment. The fact that you have another rheumatology appointment suggests that the inflammatory arthritis is still with you.

    Do you have a Helpline number you can ring? They might bring your appointment forward. What medication are you on?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • clairefrances17clairefrances17 Posts: 10
    edited 30. Nov -1, 00:00
    Hello stickywicket. Hello and thank you for your very helpful reply.

    I have been wondering for a while if this is more than OA, especially as my back is still a wee bit painful from pleurisy, however my Rheumatologist seems to be a bit reluctant to actually say what is going on. I will keep plugging her as I would like to know what I'm dealing with.

    I did phone her via her secretary, who said I should get a letter with a follow up appointment via post and I'm unable to see her sooner.

    I'm currently taking anti inflammatory tablets, when it gets painful. I do have some steroids to take 3 a day for 5 days from a previous attack earlier this year, but will wait if things get worse before taking them. I was given some codeine, but they don't seem to do much for me, so have abandoned them and paracetamol doesn't seem to work either. Apart from that we haven't discussed medication.
    Hello Claire and welcome from me too.

    I have RA which led to OA because the proper disease modifying meds (DMARDS) weren't available back then.

    To me - and remember I'm only a patient - the symptoms you're describing sound more likely to be connected to the post- viral inflammatory arthritis than the OA. I find OA relatively uncomplicated in that it hurts and it hurts more if I overdo things but the fatigue and 'general unwellness' are things I associate more with my RA.

    Your rheumatologist has told you you have OA but normally that would mean you being passed back to your GP for treatment. The fact that you have another rheumatology appointment suggests that the inflammatory arthritis is still with you.

    Do you have a Helpline number you can ring? They might bring your appointment forward. What medication are you on?
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, I am one of those with a creaky foot in both camps, I began my auto-immune arthritis back in 1997 and OA was diagnosed in 2011. The rheumatologist ignores the OA and the GP the PsA (psoriatic arthritis). Neither have arthritis so are dealing with theory leaving me to get on with the reality. The meds do what they do leaving me to pick up the terrific slack left behind.

    My OA inflammation is localised to the joints I have over-worked whereas my PsA inflammation affects my while body. Of the two I prefer the OA because it is more honest in what it does and how it does it, the PsA is incredibly cunning, devious and sly. The broadband here is BT - bl**dy terrible (I'm on holiday) so I'm off for the time being as it keeps dropping out. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • clairefrances17clairefrances17 Posts: 10
    edited 30. Nov -1, 00:00
    Hello dramdaisy, lovely to hear from you.
    Love your description for the broadband.
    I agree with you; I know what the pain is, it is what it is, but the fatigue and rubbish feeling is sneaky, as I never know quite how I'm going to feel day to day, hence I feel unsure that it's just OA. I will keep asking the rheumatologist.
    I retired last year, but do lots of voluntary jobs for our local church, who are really kind if I can't make it.
    I love your take on GP and Rheumatologist dealing with theory, I feel mine do too as they are so much younger.
    Enjoy your holiday. :)
    dreamdaisy wrote:
    Hello, I am one of those with a creaky foot in both camps, I began my auto-immune arthritis back in 1997 and OA was diagnosed in 2011. The rheumatologist ignores the OA and the GP the PsA (psoriatic arthritis). Neither have arthritis so are dealing with theory leaving me to get on with the reality. The meds do what they do leaving me to pick up the terrific slack left behind.

    My OA inflammation is localised to the joints I have over-worked whereas my PsA inflammation affects my while body. Of the two I prefer the OA because it is more honest in what it does and how it does it, the PsA is incredibly cunning, devious and sly. The broadband here is BT - bl**dy terrible (I'm on holiday) so I'm off for the time being as it keeps dropping out. DD
  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    I'd guess that it's not that your rheumatologist is reluctant to say what's going on so much as not quite knowing. There are a huge number of inflammatory arthritic conditions and putting a specific name to one can be quite difficult until or unless something happens to give the game away. The fact the she is still seeing you indicates that she doesn't think you have 'only' OA but is perhaps waiting to see if this will go away on its own rather than requiring regular disease modifying medication.

    The anti-inflamms can be used for different types of arthritis. Steroid tablets are used just for the inflammatory types and I think you are wise to hold back on them. They have a useful role to play at times but can do more harm than good if taken for too long.

    As for pain relief - it's a bit hit and miss. Some things work for some people and others for others. I'm a believer in doing without when possible.

    Your GP can prescribe all the ones you've mentioned. Should you require a disease modifying med the GP can only prescribe them as instructed by the rheumatologist. I hope you don't need them but they're very useful for those of us who do :wink:
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I'm sitting under the router/modem/box of tricks so if this fails . . . . I am usually a town mouse with cable, being temporarily a country mouse without is very frustrating . . . .

    I never commit to any future engagement simply because I do not know how I will be on that day. One engagement I was determined to attend in August was the funeral of my cousin but, as it turned out to be on the hottest day of the year, I physically could not go (my PsA had a whale of a time during the hot spell, regardless of the meds and I spent ages in bed, asleep).

    Arthritis affects us and those around us. Two good articles on the web are The Spoon Theory and There's a Gorilla in my House, both give clear and concise explanations of the challenges faced when living with a chronic condition. AS we are away my spoon supply is automatically depleted but I have to carry on as if there is a surplus - it's not easy. My husband loves holidays, I am nowhere near as enamoured and never have been. It takes three to tango, him, me and the disease.

    I am retired but managed to work for seventeen years, being self-employed was a boon as I could tailor things to suit my ever-increasing needs. Arthritis has changed my life but it hasn't (and won't) change me. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • clairefrances17clairefrances17 Posts: 10
    edited 30. Nov -1, 00:00
    Thank you so much for your very helpful post, as it never occurred to me that there would be so many inflammatory arthritic conditions. I'd rather do without anti inflammatory when I can too and will wait until I hear from the rheumatologist again.
    I'd guess that it's not that your rheumatologist is reluctant to say what's going on so much as not quite knowing. There are a huge number of inflammatory arthritic conditions and putting a specific name to one can be quite difficult until or unless something happens to give the game away. The fact the she is still seeing you indicates that she doesn't think you have 'only' OA but is perhaps waiting to see if this will go away on its own rather than requiring regular disease modifying medication.

    The anti-inflamms can be used for different types of arthritis. Steroid tablets are used just for the inflammatory types and I think you are wise to hold back on them. They have a useful role to play at times but can do more harm than good if taken for too long.

    As for pain relief - it's a bit hit and miss. Some things work for some people and others for others. I'm a believer in doing without when possible.

    Your GP can prescribe all the ones you've mentioned. Should you require a disease modifying med the GP can only prescribe them as instructed by the rheumatologist. I hope you don't need them but they're very useful for those of us who do :wink:
  • clairefrances17clairefrances17 Posts: 10
    edited 30. Nov -1, 00:00
    Thank you so much for the web articles. We haven't been away for about three years, but my oldest son and his family stayed with us for a few weeks last summer, (he lives in Canada), and it was lovely although I couldn't do too much as was still feeling weak and this summer I went to my sister's funeral in Bath, which was about the time this flare up started. I do hope your spoon is repleted soon.
    dreamdaisy wrote:
    I'm sitting under the router/modem/box of tricks so if this fails . . . . I am usually a town mouse with cable, being temporarily a country mouse without is very frustrating . . . .

    I never commit to any future engagement simply because I do not know how I will be on that day. One engagement I was determined to attend in August was the funeral of my cousin but, as it turned out to be on the hottest day of the year, I physically could not go (my PsA had a whale of a time during the hot spell, regardless of the meds and I spent ages in bed, asleep).

    Arthritis affects us and those around us. Two good articles on the web are The Spoon Theory and There's a Gorilla in my House, both give clear and concise explanations of the challenges faced when living with a chronic condition. AS we are away my spoon supply is automatically depleted but I have to carry on as if there is a surplus - it's not easy. My husband loves holidays, I am nowhere near as enamoured and never have been. It takes three to tango, him, me and the disease.

    I am retired but managed to work for seventeen years, being self-employed was a boon as I could tailor things to suit my ever-increasing needs. Arthritis has changed my life but it hasn't (and won't) change me. DD
  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    If you can do without the anti-inflamms so much the better but, if you're flaring, it's best to (a)take them regularly and (B)take a stomach-protecting med too which your GP can prescribe.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • clairefrances17clairefrances17 Posts: 10
    edited 30. Nov -1, 00:00
    Thank you so much for your help. I've been on a stomach-protecting med for a while now as I have acid reflux sometimes and my GP had recently doubled the dose.
    I saw my rheumatologist today, (a sudden appointment), and after recent blood tests she believes that it is osteoarthritis and not rheumatoid arthritis, which I'm really relieved about and that it could have flared up due to recent stress. She also said that after a recent CT scan I have a hiatus hernia, which was a surprise and explains the acid reflux.
    She was reluctant to prescribe steroids or anything stronger, which I'm really glad about and advised trying one anti-inflammatory until it subsides. Happily she is keeping an eye on how it goes, (I had some more blood tests). I feel much happier now I now what it is and it's really comforting to have the support of you all on the forum.
    If you can do without the anti-inflamms so much the better but, if you're flaring, it's best to (a)take them regularly and (B)take a stomach-protecting med too which your GP can prescribe.
  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    I think the great strength of the forum is that we do understand the basics of arthritis so we can come here when things are rough knowing that people will know where we're coming from, not require lengthy explanations (Why are you tired? Why can't you do it today when you could do it yesterday etc etc) and comprehend the need to sometimes just have a safe place to moan.

    I'm glad the consultant's visit has reassured you. Arthritis of any kind does love stress and seems to feed off it which is entirely counterproductive. And annoying :wink:
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I had a long day yesterday meeting up with family. It involved a three hour drive to get there and back, plus three hours sitting and chatting. I prepared on Saturday by doing nothing in the afternoon and evening and will recover today by doing nothing this morning or afternoon but will go out tonight for a meal. This is one way of coping with the outrageous demands of the condition but it's one that means I win:. DD 1 Arthritis 0 (again!) I admit it's an irritating strategy but gone are the days when I could do things without thinking, planning or preparation. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • clairefrances17clairefrances17 Posts: 10
    edited 30. Nov -1, 00:00
    It is reassuring to know that tiredness is normal and that stress can play a part. I recognised I was grieving for my poor sister, but didn't know I was stressed, but my arthritis obviously did. It also helps explain why I have good days and bad days, yesterday was a good day, having a meal with a friend and today is a bad day. I go to bed early as I could sleep for England and if I need to get up at a certain time I set three or four alarms to wake me.
    I think the great strength of the forum is that we do understand the basics of arthritis so we can come here when things are rough knowing that people will know where we're coming from, not require lengthy explanations (Why are you tired? Why can't you do it today when you could do it yesterday etc etc) and comprehend the need to sometimes just have a safe place to moan.

    I'm glad the consultant's visit has reassured you. Arthritis of any kind does love stress and seems to feed off it which is entirely counterproductive. And annoying :wink:
  • clairefrances17clairefrances17 Posts: 10
    edited 30. Nov -1, 00:00
    Many thanks Sharon. It's really helpful :)
    webmanager wrote:
    Hi clairefrances,
    fatigue and feeling tired all the time is very difficult. A little while ago with the help of this community we developed a fatigue fact sheet that you might find useful https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/1208-fatigue-factsheet
    Let us know if you find anything that helps you
    Best Wishes
    Sharon
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