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Just had diagnosis

HuntyCatHuntyCat Posts: 4
edited 29. Apr 2014, 14:04 in Say Hello Archive
I've been told by my GP for 2 1/2 years that I had "arthritic type pain" in my joints. Today I've been told that it is "non-specific inflammatory arthritis". I have epilepsy, so am on 900mg/day gabapentin anyway, and I've been on naproxen for just under two years, I'm now up to 1,000 mg/day, and I was taking OTC cocodamol on my GP's recommendation. Today I've been put on 30/500 cocodamol. I can't use tramadol or morphine as they make me too 'spacey' to look after the kids.

It started in my right wrist but now I have it in both wrists, all my fingers, my knees, my ankles and now the worst is my right hip. I'm bed bound other than the school runs.

Oh - I'm also a lone parent to 4 children, who all have disabilities, SEN and/or medical needs depending on the child. I also have my 23yo brother with Aspergers living with me.

I lost my DLA in October, and haven't had any Carers from ASC since April last year as my conditions are 'variable' (yeah, from a bad day to an I can't get out of bed or to the toilet without help day...), so we are muddling along as best we can.

Well, this is me. I use a stick to get about, but my daughter's disability SW is trying to get me some help to get me a mobility scooter as I'm struggling so much.


[Edited to change pink writing to black, which is easier on my poor eyes 8)
Ironically, mod edits are in dark red to distinguish them from ordinary posts :D
Mod B]

Comments

  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    Hello HuntyCat and welcome to the forum though I'm sorry about the diagnosis. Was it a rheumatologist who made it? It usually is.

    I've had RA for for over 50 years which means I also have OA. I'd strongly advise against the 'bed-bound' thing. I know it's tough walking about and doing stuff when every joints is crying out for relief but it's not good for the muscles. They support the joints and that helps to keep pain levels down.

    Are your children old enough to help about the house? It's no bad thing as it teaches them independence.

    We have a couple of ladies on here who have both epilepsy and arthritis. Hileena has OA and bubbadog has an inflammatory arthritis like you so please join in anywhere you like. We do understand.
    “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
    Hello Huntycat, it's nice to meet you but I am sorry you have had to find us. Inflammatory arthritis can be very hard to diagnose (there are around 200 types) so don't fret about the vague label - it tells those who need to know what is a-foot. Even if the label changes the meds probably won't - that's my experience anyway. You don't sound as though you are taking anything other than pain relief and gabapentin, has no-one suggested methotrexate, or sulphasalazine or hydroxychloroquine? They tend to be the standard entry-level meds.

    You sound as though you have your hands full but I hope that at least one child is of an age (and ability) to help out on a regular basis. Children like being trusted to be responsible but of course your brood may find that too difficult.

    I hope this isn't too nosey a question but why did you lose your DLA? I agree with Sticky that staying in bed is not as option, no matter how much it hurts we have to keep moving. I have psoriatic arthritis in my toes, ankles, knees, sacro iliac joints and some of my upper joints, and the joint damage from that has led to OA in both ankles, both knees, both hips and my neck. I use a crutches or a rollator, I find I walk better with that. A scooter may help outdoors but won't do much for you indoors; crutches may be the answer for that. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • HuntyCatHuntyCat Posts: 4
    edited 30. Nov -1, 00:00
    My staying in bed is after I've done 6 miles of school run (very slowly...) in the day. Rheumy dxd yes. No the kids aren't really able to help. I lost my DLA because I couldn't get any help filling in the renewal form as the CAB had a 13 week lead time for appointments and due to a house move, I only got 5 weeks to fill in the form.

    [Colour edit, as above
    Mod B]
  • barbara12barbara12 Posts: 20,782
    edited 30. Nov -1, 00:00
    Hello Huntycat and a warm welcome from me
    Gosh you do have yours hands full, have you not got a social worker that could apply again for you and maybe get more help for the children.
    You will find the people on here so supportive and if you have any questions about your arthritis just put the in LWA and we have chitchat were we talk about anything but..I do hope you can get some help with the dla soon you certainly need it..I look forward to seeing you around the forum.
    Love
    Barbara
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    Blimey! That's an awful lot of walking. Do you mean 3 miles there and three back twice a day? And, presumably, housework and cooking too? You must be exhausted and in a lot of pain. Has the rheumatologist put you on any meds for the inflammatory arthritis?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • hileena111hileena111 Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Huntycat
    Welcome to the forum......You'll find people with all sorts of arthritis on here ...and other things as well....I'm Hileena that sticky mentioned I've had epilepsy for the past 60 :shock: years or so.....its been stable for about 30 of those due to medication.
    Do you walk 3 miles there and 3 miles back??? That is a long way.
    I do agree with the others about being bedbound (although I don't see how you can be with the children.)
    I've just had a second hip replacement {13 weeks ago} and 4 weeks into recover {9 weeks ago} I got a fracture. I cant walk without crutches. Before any walking aid was to ease the pain now it is literally because I CANT walk. I can walk a couple of steps inside but am dipping down to the side badly and am very unsteady. But I have to keep moving one way or the other.
    I know it sounds harsh but its a matter of "use it or lose it"
    I'm on Naproxen as well, the other pain relief :roll: is paracetamol :roll: I do have codeine as a back up if I need it but I can only take one or two at the most {15mg} a day They do not agree with me.
    Keep talking to us and ask any questions you want to.
    Love
    Hileena
  • HuntyCatHuntyCat Posts: 4
    edited 30. Nov -1, 00:00
    The school run is a mile each way, but I have to do there and back in the morning, there and back at lunchtime as my three year old is at preschool just for the morning, and then there and back in the afternoon to get my 10yo. Housework...I've all but given up on that, my kids rarely help and my ex is next to useless.
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    That is a lot of walking when your lower joints are affected. Have you tried physio? I know people often think that's the last thing they need but I find it helps most when I feel that way. Something about stretching opposing muscles. It actually relaxes them.

    I also know how difficult it can be to get kids to help out around the house. Easier, often, to do it oneself. But the first time I was in hospital for about 3 weeks I returned to find my husband had drawn up a rota of who did what and when AND IT WORKED. Even the youngest can do some small jobs and feel part of the 'task force'. Why not give it a go?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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