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In constant agony...

Posted , 7 users are following.

tootsi
tootsi

hi everyone, I was first sent to rheumatologist in sept as I had lost strength , feeling and had pain in my arms. I also had high rf in blood. Rheumatologist didn't think I had RA but gave me steroid injection. It helped but I was soon in constant agony more than before and completely exhausted. I kept going back to Dr they doubled my naproxen, codeine and paracetamol but I am still in horrendous pain then 2 weeks ago they finally had my results from hospital following tests I had (3 months previous) and just casually said that I do have RA and that the consultant would sort meds at hospital when I go on 30th December. I have been in agony all over Christmas and I haven't left the house due to pain in my hip and leg, I can't sleep and no where is comfortable and I couldn't walk properly this morning, I just keep crying in pain and keep taking pain killers I'm due back to work next Monday ( stressful job) if I can't get any relief soon I don't think I'm going to be able to work not sure what I'm going to do, any advice from anyone regarding my appointment and what to ask and expect on 30th? Many thanks and sorry for complaining...x

2 likes, 16 replies

16 Replies

  • briana90135
    briana90135 tootsi

    Posted

    hi tootsi i as far as i know dont have ra, but can empathise with you with you pain,, i like you are in chronic pain, and as you say just up the codine!! i am waiting for surgery but how long is  a piece of string,,,, its completley ruined christmas for me and my family,,, tired. irratable, cant sleep as is terrible pain,,, i cannot understand in todays society where a grown woman can sit in the middle of the night crying in pain wanting to cut her own arm off and not getting better pain relief, and to top it all i am a full time carer to my hubby.. whohas early onset dementia,,, i feel for you, xx

     

    • tootsi
      tootsi briana90135

      Posted

      Bless you, I hope you also soon get some help, I know it's cruel I often think they wouldn't let an animal suffer like this. I am sorry that your husband is also not well, I know how hard dementia is to live with and how difficult it is to care for someone full time. Take care of yourself and I hope you soon get help. Xx thank you for taking the time to reply to me.x
    • tootsi
      tootsi briana90135

      Posted

      Hi all,

      yes just diagnosed today, since early this year I started losing strength, feeling and had pain in both arms as if they were made of lead, I eventually went to Dr who did blood tests and I had high RF levels and vit d deficiency, put me on pain killers and anti inflammatory and arranged a rheumatologist appointment. More of the same but said didn't think it was RA as pain was all in my muscles. Waited 3 months then they wrote to Dr who told me 2 weeks ago I had RA and that when I went (today) to see consultant that they would sort Disease modifying meds . Obviously I didn't want to have RA but at last I felt I had an explanation to my exhaustion and agonising constant pain, I actually had been looking forward to the appointment all over christmas! I went today consultant said to me "have you always been a big girl" I was devastated I have put weight on as I have been so poorly all year I haven't been able to do anything, I mean anything other than manage to get to work and come home exhausted. I was so upset, so upset I haven't even been able to tell my partner who actually came with me. I already take antidepressants and suffer from depression and post traumatic stress disorder . Consultant decided that the side effects of disease modifying wasn't worth risking prescribing as she wasnt 100% sure it was RA as my finger joints didn't hurt or were not affected, but the severe pain would then be down to fibromyalgia, gave me a leaflet said she would prescribe tramadol and amitriptaline and took more bloods, discharged me and said she would recall me if bloods proved otherwise. I now feel even worse than I did ( if that's possible) as now on top of all this unbearable pain I feel so low, even more self concious with no self confidence at all. I keep crying and don't know what to do. I haven't been able to eat all day as I feel so bad about myself. X

    • beckithered330
      beckithered330 tootsi

      Posted

      I just wanted to say that I completely empathise with how you're feeling. It's never easy to be given what you think is a difinitive answer and then have if taken away from you. I have been in and out of the hospital since I was 8 with my joints and the chronic pain, I'm now 18 and just over a month ago was difinitively told it was arthiritus.. Over 10 years now my condition has developed and is now in almost every part of my body, I'm in constant chronic pain and the pain killers don't even take the edge off. I was told the pain was in my head when I was a child and after numerous operations and treatments I have an answer, I too have depression and fibromyalgia, but hang in there.. Don't ever take no for an answer or let them par you off, I just wanted to tell you that there will be a light at the end of the tunnel.. My light was the diagnosis, you will get yours soon. Try putting a pillow under your leg and hip to help with the discomfort and try to keep moving it.. I really hope you get the answers you need as quickly as possible. x
  • frances85589
    frances85589 tootsi

    Posted

    Hope they try something stronger on you tomorrow. Thing is there is too long between appointments.Mine started after my dear Mum died in 2010 and I am still in constant pain.I am on different drugs n steroids which without I wouldn't be able to get out of bed as I was at one point but they keep trying me on different drugs but nothing has helped much as I guess they will you.I start another lot in january after having to wait 6 mth in between .

    I hope something helps for you as It drags you down.I used to be a happy bright person always laughing but now I can't work or get about on my own my personality has changed.pain just makes you miserable. Try n write down all your symptoms n read it out to the consultant when you go as I am sure you will forget things.I can give good advise but forget to do it myself ! Also cry...they don't like that..I can't help it...it makes you an emotional wreck.They can't cure you but drugs can dampen it down.good luck x

    • tootsi
      tootsi frances85589

      Posted

      Hi yes I agree it definitely drags you down, I feel so low all the time and just miserable, I'm sorry so many others are also in so much pain. I know I can't be cured but I just can't cope in so much pain. I feel about 90 and I'm only 43. Thank you for the advice and take care xx
  • melanie09308
    melanie09308 tootsi

    Posted

    Hi tootsi........good advice given previously........CRY! I did because I couldnt believe how much pain I was in. I hobbled to my appointment....sat there and cried. I was immediately sorted. I am now on hydroxychloroquine and Naproxen and YIPEEEEEE!! I can move, am still in occasional pain with my hands but nowhere near as bad as I was. I went from being an 81 year old back to a 51 year old, which is what I am and should be!!! GO FOR IT AND DONT SETTLE FOR ANY CRAP ABOUT LONG TERM WAITING...........OH, AND DONT FORGET TO CRY!!!! Good luck smile
  • Light
    Light tootsi

    Posted

    One leg only....? doesn't sound like RA.

    Either way, take a friend with you to the consultant, write down ahead what you want to ask, and get the friend to remind you about your list or better still get them to have the list and interrupt the conversation with it, and write down the responses. A first visit can be very discombobulating and everything could go right out of your head...

    .

    The RA consultant will do several tests but they may be very perfunctionary, so tell him/her you want answers and refuse to leave until he/she has given them...

    There are stronger painkillers. Ask for them.

    Be kind to yourself. We tend to bully our bodies to get it up to speed.

    Let go. It may not get up to speed for a while. You may need sick leave.

    Take it easy.

    I know the despair and the pain... and feel for you

    • Light
      Light

      Posted

      Someone said cry! I agree. Cry at home, cry with the consultant. Show him how bad you feel.

      There is a limit to what he can do for you, so you will have to love yourself enough to do the bits between.

    • rex_44766
      rex_44766 Light

      Posted

      I truly feel for all of you. Was due for TKR next april and put on a swag of pain killers. My wife flushed them all down the toilet, forced me to laugh as often as possible, gave me fresh vegetable juice twice a day with kale, brocolli, spinach etc and put me on the exercise bike 3 times a day. Now four months later I am pain free, and rather oddly other complaints have disappeared. Previously I could only shuffle 100 metres and was about to throw in the towell. We started modifying the house for coping with handicaps (two story house). This has all been put on hold. Oh yes I did lose a heap of weight and realise this was how I got into trouble in the first place. Also shed 7 meds - this is VERY hard as doctors seem to hate one shedding meds. Now down to half a BP pill and hope to lose it by May. BP last night was 110/58/52. Most of my life (74) I have been way, way over 170. Have also dropped all bread and dairy. Health is far more important than food taste sensations. Hope this rambling might help just one of you to get off the slippery slope. Just remember - never give up.
  • Liz48603
    Liz48603 tootsi

    Posted

    Thoughts with you Iv just wrote on here to for help as I had to leave my job felt ill low & in pain sometimes it just feels am the only person in the world with RA hope doctor helps you 😄😪
    • tootsi
      tootsi Liz48603

      Posted

      Hi Liz,

      since early this year I started losing strength, feeling and had pain in both arms as if they were made of lead, I eventually went to Dr who did blood tests and I had high RF levels and vit d deficiency, put me on pain killers and anti inflammatory and arranged a rheumatologist appointment. More of the same but said didn't think it was RA as pain was all in my muscles. Waited 3 months then they wrote to Dr who told me 2 weeks ago I had RA and that when I went (today) to see consultant that they would sort Disease modifying meds . Obviously I didn't want to have RA but at last I felt I had an explanation to my exhaustion and agonising constant pain, I actually had been looking forward to the appointment all over christmas! I went today consultant said to me "have you always been a big girl" I was devastated I have put weight on as I have been so poorly all year I haven't been able to do anything, I mean anything other than manage to get to work and come home exhausted. I was so upset, so upset I haven't even been able to tell my partner who actually came with me. I already take antidepressants and suffer from depression and post traumatic stress disorder . Consultant decided that the side effects of disease modifying wasn't worth risking prescribing as she wasnt 100% sure it was RA as my finger joints didn't hurt or were not affected, but the severe pain would then be down to fibromyalgia, gave me a leaflet said she would prescribe tramadol and amitriptaline and took more bloods, discharged me and said she would recall me if bloods proved otherwise. I now feel even worse than I did ( if that's possible) as now on top of all this unbearable pain I feel so low, even more self concious with no self confidence at all. I keep crying and don't know what to do. I haven't been able to eat all day as I feel so bad about myself. If anyone has any advice I would appreciate it. Xx

    • tootsi
      tootsi Liz48603

      Posted

      Hi Liz, 

      just sent you a message I sent on the fibromyalgia forum, I'm sorry to hear your suffering too. Im not sure how long I'm going to be able to keep working. Please don't feel alone, I'm new on her but first impressions lots of people in same situation and care. Hugs xx

    • Liz48603
      Liz48603 tootsi

      Posted

      We sound like twins toots got to see funny side or we will both just CRY again lol 👍😪
    • Liz48603
      Liz48603 tootsi

      Posted

      My trouble about not being able to eat is same but now friends are saying I look thin & ill.. I hate losing weight grrrrr 
    • frances85589
      frances85589 tootsi

      Posted

      Sorry you had bad experience today. I was thinking about you and thought you would get better treatment.The amitriptaline is an anti depressant that will help relax muscles I think.Tramadol is very strong painkiller which some people can't get on with.I couldn't and my youngest daughter who has fibromyalgia it just zonked her out.Not good if you have children to care for.See how you go. If no good go back to your doctor. My daughter did today and changed her onto the amitriptaline.Keep going back to doctors if you get worse.my blood results etc first was diagnosed with fybromyalgia then was so bad ended up in hospital on steroid drips for week and found out I had rheumatoid arthritis too.am still no better 4 years later as they can't find drug for me to help pain and slow it down.

      Keep at them and I hope meds help you

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