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Had enough.. Not coping at all

Posted , 7 users are following.

Lisa_Batts
Lisa_Batts

Sorry to join this group on such a low note. A already have peripheral and cerebral neuropathies and for the past year have been treated also for PRA with MTX and Pred steroids. I decided to do 4 months of MTX and then try a month without it. This choice was taken away from me as I ended up in hospital after 8 weeks of infection and my doctors not taking it seriously so I had 6 weeks off MTX and by the end was begging to be on it again as the pain was so bad. However I was waiting for an appt with my rheumy to see if there was an alternative. Not for me apparently. Back on MTX and gradually coming off the steroids.

I am now virtually housebound. I get to go out about 2 hours a week and I've had enough. I am sitting here with joint pain so bad I'm just in tears. It's seems I'm damned on the MTX and damned off it.

We all talk about the side effects but I've never felt depressed like this. I'm fed up of being told how strong I am because all of a sudden I don't feel it. Please any kind words or somebody else who has felt like this please tell me I'm not going mad

Lisa

0 likes, 25 replies

25 Replies

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  • pippie56520
    pippie56520 Lisa_Batts

    Posted

    This is a hard post to reply to, when we are down we really are down.

    Have you talked to your GP about the depression, it is part of the condition as are flare ups and I hope that you are at the peak of a flare up and you will start to improve soon. It could be something to explore (medication for depression), I am waiting for counselling through my GP for my mood and I was given a website to work through while I wait and I think it has helped.

    You are not going mad, just focus on one thing you can control.

     

    • Lisa_Batts
      Lisa_Batts pippie56520

      Posted

      Pippie thank you for replying. I realise that this was not an easy one to reply to so bless you for doing so.

      I have talked with the doctor about the depression which has only come on in the last month despite all this going on for over a year. I am on antidepressants already as I'm bipolar too! I was hoping this would pass but it isn't. He has referred me to help groups but I don't want to make my life about my illnesses if that makes sense. The pain I am in at the moment I have not experienced since before medication and it has got worse in the last 2 hours so I have contacted a doctor just to be on the safe side.

      I just feel every time I get up I get knocked back down at the moment.

      Thank you for letting me know I'm not alone 😊

  • robert271163
    robert271163 Lisa_Batts

    Posted

    Hi Lisa 

    you are not alone by far this horrible disease can be nasty at its worse and all the different meds give you hope but sadly they dont work for every one and its a bind trying different ones until they find the right conbination which works for you. It also does not help with one professional saying do this and another saying try this, its ok for them as they are not going through it and dont have the pain and the highs and lows as we do. I try to focus on becoming better with the hope that the next drug will work for me but knowing that there is so many to try to get it right. But the main thing is to have people around you to help you cope, get them to read up on the condition so they can understand what your going through. I was denied drugs for depression due to the amount of drugs i am alredy on for my condition, maybe not a bad thing as they can be very addictive and not easy to get off. The main thing is to have a good support network to help you through it, being able to talk to others with the same understanding like on here can help knowing your not the only one that feels the same. I have found that being on here makes me feel normal and i am not alone. as you said its hard for people not to relate to how we feel you are not alone. keep your chin up and focus on the good and talk to us all 

     

    • Lisa_Batts
      Lisa_Batts robert271163

      Posted

      Bless you Robert for this wonderful message. I only got to it this morning as I spent 7 hours in hospital last night and this was just what I needed to read this morning. I am too hard on myself. I feel a failure when I let it all get to me and forget that this is a vile disease with vile treatments. My support network is very limited but priceless. My parents (but they are in their 70's so I try not to put too much pressure in them) and I have the best friend in the world who supports me so much but she lives in America. Thank you for making me feel not alone and for taking the time to reply. You are right that every doctor gives different information so I have researched MTX to within an inch of it's life. Today is a new day 😊 and the pain is certainly more manageable... I mean I won't be going dancing or anything 😂😂 but am feeling better in myself, especially hearing from others in the same situation. Thank you. I hope you have a good day 😊😊☀️ Lisa
    • robert271163
      robert271163 Lisa_Batts

      Posted

      Hi Lisa 

      we all know its not easy by all accounts i am not as bad as most on here although i do suffer a lot of pain and i take Tramadol Co-codomol and Ibrufen as well as Sulfasalazine and Methotrexate at present i am increasing on the Methotrexate up to 15mg i will be at 15mg in 3 weeks time, i had been on 7.5mg with nopositive results, hence the increasing dosage. So fingers crossed it will have some effect and start to make it easier for me. As we all know there are so many different meds we can take to suspress it its a minefield finding the correct combination for each individual. We all have good and bad days i am lucky if i have a good day once a month atm, i normally find that most mornings and evenings its worse. I get shooting pains through my fingers and toes which really hurts. I am currently waiting for a week in hospital for intense phsyio with a hope that it might aid me in some sort of recovery, Which will include Swimming in a heated pool of 35deg C Wax treatment and acupuncher. Our main problem with being on Dmards are the damage they can do and lowering our immune system. But i try to remain possitive although like you i have my down days thinking is this it for the rest of my life but i am assured by the Specialist and my nurse there is light at the end of the tunnel. I also have a contact number for support whenever i need it and it is also for my wife too. I think it depends where you are in the country to the support you have access to but we do have this forum to speak to other sufferers. Remeber there is always something they can do to help, and you can always ask for more help when you need it. The main thing is to try to stay positive as hard as it is when we are at a low ebb. Keep in touch as they say its good to talk 

    • Lisa_Batts
      Lisa_Batts robert271163

      Posted

      Robert

      Good luck with the increase of MTX. I am making an appointment with my doctor next week to get more support. I am giving myself this week off! I don't want to put a spanner in the works but through my research you shouldn't take ibuprofen with MTX. There is a drugs interaction site you can download. Ibuprofen can increase the toxicity of MTX. However check with your specialist. I'm no doctor! There is always a light at the end of the tunnel. Keeping positive today. Sending you and your wife good happy vibes today 😊 I think I will get back to using this forum more. It has certainly helped me many times. Thank you. Lisa 😊☀️

    • robert271163
      robert271163 Lisa_Batts

      Posted

      Hi Lisa

      i have not read anything about ibuprofen and MTX you maybe right there i will have a look into it. However my specialist know thats what im taking and have not advised not to, but i will read into it thanks for the advice. hope your feeling better today and more positive. Ihave been told if this treatment does not work the next thing is self injection but it costs £10k a year and has to be funded although as long as i have been on the sulf and MTX there is no problem getting the funds, but i will have to see how i get on i am back to see specialist end of August for a reveiw so fingers crossed, im not keen on self injection

       

    • Lisa_Batts
      Lisa_Batts robert271163

      Posted

      You poor thing. Take little steps though and hope the increase in MTX works and you don't have to go to injections. Cross that bridge if and when. I am more positive today thank you. I am spending the day in my pyjamas... Just because I can! 😂😂
  • jane_58649
    jane_58649 Lisa_Batts

    Posted

    Hi Lisa

    So sorry your suffering it's horrid but try and think positive thoughts that this is a flare and your at the top of it . It won't always be like this it will improve for sure. Do you see a pain specialist and have you tried acupuncture I swear by that. Also you don't state how old you are but do you think our female hormones are also having an influence?

    It will get better I know i have flares and it's scary my last one affected my eyes with anterior uveitis but now better please please be positive it will get better xxx sending love and hugs

    • Lisa_Batts
      Lisa_Batts jane_58649

      Posted

      Dear Jane

      Thank you for taking the time to reply 😊 I don't have acupuncture or pain management (except for painkillers which I very rarely use). I manage the pain with mild physio and ice packs.

      I have not had a flare up like that before so I guess I'm lucky and it is certainly passing. I ended up in hospital last night because I spoke to a doctor and they were concerned at how disorientated I was. In fact when dad met me at the hospital he was shocked. It passed too though but I forget that it's not just pain this can cause but mentally it can flip you.

      I am 46 and my friend is absolutely convinced that hormones play a part in this as she has seen a pattern. I think maybe my not accepting how harsh this is and trying to carry on as usual is making me too hard on myself. I need to accept I am ill and not a failure every time I am unable to do the goals I set for myself.

      Love and hugs back to you

      Have a good day

      Lisa 😊☀️

    • robert271163
      robert271163 Lisa_Batts

      Posted

      i tried coming off my meds on my own it took 4 days and i was so bad i had to start them again. i was instantly coping better. Maybe try the pain killers when your really bad. but not rely on them. I must admit i take all mine daily wihich is just over a Hundred every week but it helps me cope. 
    • Lisa_Batts
      Lisa_Batts robert271163

      Posted

      I am cutting down the steroid gradually but won't come off others with the specialist say so which is hard as my Appts are 5 months apart.

      I only take painkillers when really needed. I took 4 yesterday which is really unusual for me. I am trying to keep my meds to a bare minimum and don't like the codiene spaced out feeling on top of all the others. We all try different things though. We get by with whatever works for us 😊😊

    • robert271163
      robert271163 Lisa_Batts

      Posted

      i am lucky that neither the Tramadol or the Co-codemol space me out most times you cant tell im on them apart from being a little more tired.
  • sheila65847
    sheila65847 Lisa_Batts

    Posted

    Hi Lisa, Robert and all,

    I'm sorry you are having a rotten time. I know it's no consolation but I truly understand. I'm just recovering from the worst relapse I've ever experienced, it frightens me, the progression of this illness. My meds were Humira and Leflunomide plus painkillers. I had to stop med's in April due to severe pneumonia (was hospitalised for a week), then had other infections. Mid June I had a small op to remove a psoriatic ingrown toenail (the hoof!). Guess what? Got infected, 2 courses of anti bios later, I've restarted the Humira and the swelling and pain reduced by 95% within 2 days! Fantastic! A week ago I could not rise out of a chair or bed without assistance, scared me to death and as you know the pain is unbearable. Thank God we have skilled rheumatology staff and drugs to supress this disease. I know it's very hard to be grateful when you are in agony. I struggle mentally, too. I lost my job because of this and feel worthless a lot of the time (no kids, was married to my job-sad, I know). Plus I find it hard that people don't understand the illness. When I'm in remission, as I am now, friends say you look well, find another job but they have no idea of what fatigue feels like. Truly there's only my husband who understands plus fellow sufferers. I know the medictations we take potentially have serious side effects but I would rather risk that than end up so compromised by this illness and in agony. There are so many meds available to us that I'm sure you will find relief, Lisa. Thank you for posting, it's good to know that there is support and understanding here x

    • robert271163
      robert271163 sheila65847

      Posted

      Omg it sounds like im getting a easy ride compared to you and Lisa i really feel for you both and fully understand how bad it can be. 
    • sheila65847
      sheila65847 robert271163

      Posted

      Thanks Robert

      none of us has it easy with PsA but it's taken the past 3 months pain to make me realise how marvellous medication is and what a huge difference it makes to us all! I'm very grateful at the moment! 😃

    • Lisa_Batts
      Lisa_Batts sheila65847

      Posted

      Dear dear Sheila,

      That worthless feeling. I get that. But you know what? We are not. We are ill. I'm a great advice giver yet can't see it myself! I too was hospitalised for 10 days with suspected pneumonia and came off the MTX. 6 weeks into that I was begging for something and yet now I'm back on it I'm begging to come off it! The MTX is awful but the pain without it is unbearable. Strange how we forget. How awful for you to lose your job through this which you loved. I'm so happy you have a husband who understands. You keep going. As for the people who say you look well I read a quip the other day which said 'I may not look ill but you don't look stupid. Looks can be deceiving'.... Oh how I'd love to use that! Trouble is I can't run away after! 😂😂😊 sending some sunshine thoughts for you ☀️☀️ Lisa

    • Lisa_Batts
      Lisa_Batts robert271163

      Posted

      Nobody has an easy ride with this Robert. Seriously all of us suffer at different levels but the point is we all suffer and most of us suffer hard. Nobody's problems are less than others 😊😊
    • robert271163
      robert271163 Lisa_Batts

      Posted

      Might not be an easy ride but compared to you and Sheila i have had it lightly, yes i do have a lot of pain, but i have not had to go to hospital because of the pain,i only go to see my consultant and fingers crossed thats all i will have to go for, but as we all know now we dont know whats round the corner for us. I lost my job too with this and there is no short term outlook of working in the near future. Yes it gets me down but you have to just keep going and do the best to get through each day as it comes. I can not see me going back to being a chef but i am not bothered about that, but at my age it will not be easy to find a job once i am fit enough to return to work another hurdle i will overcome when i get there i guess. So for now i do what i can if i cant do it i dont and i accept it. 
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