Hitting the Wall

Ihave chronic illnessess. (diabetes, RA hypothyroid. RLS and some other stuff) I went on holday mid january- only to hit the wall. because i had been overdoing everything - working mega overtime, stressful home life and running around after married daughters/granddaughter husband etc. I totally crashed once i got back from my short break to England. I stopped ALL my medications and even decided my life wasn't working and i didn't want to be part of it anymore. Well I didn;t get that far. I went to see my Doc who was great and signed me off work and told me to rest. I am in a lot of pain everywhere and when i seen him at the beg of this week he wants me to go back on my methotrexate at the same dose 25mg on a monday - i thought he might have said start on a lower does as i havent taken it for four weeks. . I don'tknow whether i want to go back on it anyway???. not sure what i want to do and not sure if i am doing any damage by stop start. Seeing him Tuesday need to tell him but i think he'll tell me to stert it again???? i wil have to wait and see, i am sick of poisoning myself with this stuff.

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  • hi bodicea

    looks like you are having a rough time of it

    its awfull when you dont know what is happening to your body

    when i first got what ever mine is as not diagnosed never had as many aches and pains

    i hope you get spome relief soon i didnt know youlive on the magic islan i come over for the tt and gp and marshal some times been going since 1967

    not been over this year had to miss it as all this happened in april which realy got me down to missing the racing

  • Dear Minka, thank you for taking the time to reply. i am in a lot of physical painat present but o do not feel like i'm living in treacle. i am feeling better, and hopefully get things sorted soon, but i could not have carried on as i was. if you happen to visit this year let me know and iwe can go and have a miracle jar of Okells at Bushys xxxxxxxx

  • hi bodica

    yes we will do that your in oncan yep im not feeling to go today didnt sleep much last night about 5 hr kip

    go in for knee op thursday but its past that as whent for a walk yesterday and the old ankle was playing up quite a bit round leigh on me but pressed on cant imagin what itsd going to look like when they go into it

    cos their is nothing showing on mri

  • Hello bodicea, It's really good that you can open your heart and mind to us here on this site. It sounds as though you are at the end of your tether with everything in your daily life.

    My husband has been insulin diabetic for 20 odd years and I have RA, so that tells me that you are on quite a lot of medication for both conditions. Yes, Methotrexate is a serious drug which a lot of people, incluing myself, are not entirely comfortable with having to take. But, what is the alternative? I for one do not want to be crippled with distorted joints and end up in a wheelchair.

    It sounds as though you are asking too much of yourself and been really overdoing things, and you might be suffering with a bit of depression, which you might already know is a symptom of RA. Could you talk to your GP about the way you are feeling? He/she might be able to offer some constructive help.

    We mums and wives have nurtured our families through the years and they get used to us being a tower of strength for them, but there comes a time when we have to think about ourselves and be realistic about making some changes to make life a bit easier. My son loves to help me in any way he can, and perhaps your daughter/s & husband would enjoy nurchering you for a change.

    You are not alone in how you are feeling right now, and you are in good company. So, take care of yourself and I hope it won't be long before you bounce back. June xx

  • HiPetalnumber2.

    Yes you said it, i have been overdoing it and depression /anxiety is paet of that.thank you for your lovely words of care and encouragement. thank yo.xxxxx

  • Hi bodicea, I am saddened to read about your current status. I too have been 'hitting a wall' for some time now. My Consultant, in her infinite wisdom stopped all of my RA treatment about 2 years ago and in the last couple of months my RA has flared in my shoulder blades, elbows, wrists, hands, fingers and the list just goes on. My self worth levels have dropped completely and all I have to live with is pain. 24.7. But I still have hope, not much but just enough to keep me going, so please do not lose your hope. Talk to your doctor until he/she fully understands where you are at and what you want. The doctor doesn't have all of your problems you do. Make notes before you go to your appointment, breath evenly, stand to your guns and I wish you well and good health.

  • I'd be interested to know the circumstances in which your meds were withdrawn. In my case the consultant thought I was in remission/ might be developing lupus. Then she let me continue with methotrexate but dropped the anti tnf. I asked to be seen by a different consultant who has examined me more thoroughly and gave me a steroid jab. Like you I prefer not to take things but am afraid of ending up more disabled- I'm reasonably mobile and pain free now. So I'd be interested to hear your experience if you have time.

    Best, cathie

  • Dear Dandylad. Thank you for taking the time to post. I will heed your words of having hope. i shall make some notes before i see the docotor. .you take care and i send you love and best wishes

  • Hi Bodicea - and also DandyLad. Sorry you are both suffering so much. I'm not quite clear what your issues are in relation to the DMARDs or the disease. Are you both off the drugs because they weren't working well enough or because you just hated the idea of them? If it's the latter I can relate strongly to this but if the former then I don't understand why your consultants didn't push for you to try different drugs - or had you tried and not tolerated them already?

    As I said in my recent blog it's a tough proposition for many of us to take these drugs - unless we are already in so much pain that it feels like madness not to. And that also messes with our heads because pain thresholds can vary enormously - as can toleration levels.

    I'm having a week of Metoject and Hydroxy because I was fighting a heavy cold - and when I voiced my uncertainty about taking them again tomorrow as planned a friend sent me a link that helped me realise that I can't have it all ways. The doctors are doing their best with the drugs they have at hand and these drugs are working well for me to the extent that I often feel convinced the RA diagnosis was a mistake or it has gone away. I know this is rare but it does happen and maybe I'm one of those. However my GP and the consultant both pointed out that my bloods aren't yet completely normal and nor are my hands - and I need to focus on them. I can see it from both sides. If we choose to turn against our medical team's advice then we will suffer in ways that aren't possible to quantify until it's too late. If we listen to the doctors, and they are the ones seeing people with aggressive disease and it's outcomes after all, then it's hard shutting out all the other voices, including our own. But the thing I focus on is that this disease is systemic so it doesn't just affect our joints and can potentially affect our hearts and lungs too and even our blood. So I don't want to let it get the better of me and that means I have to keep injecting MTX and taking the Hydroxy and if necessary moving up to higher doses. For me this really isn't too awful physically so it's just the mental struggles that are so hard.

    I really hope you decide whatever's best for you but please remember that out of control disease = depression as well as all the other stuff and that's not a good thing so keep talking on here and to your GP and close friends and family - you are not alone - we all worry and as my GP pointed out we would have to be pretty strange not to! Tilda xx

  • PS and I also wanted to say re poisoning ourselves - that according to today's news a majority of UK and American citizens poison themselves and shorten their lives by what they eat and drink daily. So if we can look after ourselves very well in that regard then MTX and other drugs probably are relatively small fry and we are well monitored on them - unlike many of the other things human beings put into their bodies.

  • Hi,

    I too have RA and type 1 diabetes. I hit my wall in November and stopped RA meds. I hated mtx it made me so tired and i just felt like a zombie. I had been on it since Feb, and was told to keep going even tho the side affects were awful. I have since started back on other meds myself but I cannot face taking mtx again. I am back at the hospital next month so will see what they say, There are other treatments out there apart from mtx. Keep going back and keep voicing how you feel. You are a person first and a illness second!!!

  • Hi Bodicea

    I live on the magical island too! Still awaiting a firm diagnosis myself but as family history of RA and given my symptoms my GP is convinced that is what I have.

    So sorry to hear of your recent problems it sounds like you really are going through the mill at the moment. Could you approach your GP about starting on a lower dose? I don't know much about MTX but wonder how long it stays in your body after you stop taking it, is it possible the levels are still high enough that the GP believes carrying straight back on with your original dose is the best way forward?

    I really hope you start to feel better soon. This illness can drag you so far down and make you so depressed. Back in November I couldn't see any point in suffering this much pain and total fatigue forever but thankfully I'm through that now.

    Gentle hugs to you and all the best wishes in the world

    Jo xx

  • Hi Lilac-lion, its really good to hear from you. you can fully understand that the rhuematolog we recieve here on this Island is diaboloical along with the rest of the health service. My GP is really good and is being very patient with me. but as far as the hospital is concerned its diabolocal. thanks hun and take care -

    "Gura mie ayd & slaynt vie"

  • I completely agree! The Rheumatology dept. here is dire. I seem to see a procession of locums who have not looked at my notes nor appear to give a fig about me, my condition or anything else. Last locum suggested I had tennis elbow after pinching one of my elbows and I jumped! I defy anyone not to jump if their elbow is squeezed hard without warning! My GP went ballistic and wrote a letter of complaint to Rheumatology but it hasn't got us very far unfortunately. Thank goodness our GPs are on our side but heaven knows when our Rheumatology dept. will get its act together!

  • As far as I know methotrexate takes about 6-8 weeks to work and the same coming off. So restarting at the same dose after four weeks sounds sensible.

    But there is no reason why you shouldn't be able to try another of the DMARDs - disease modifying anti-arthritis drugs is after all what they are.

    If you have seen people who have NOT taken the drugs and go on to develop terrible distortion of their painful joints, you can see the reasoning behind taking them early, reducing the inflammation and being able to exercise and keep your joints in a reasonable condition.

    One of the hardest things is actually accepting that we have a long-term illness that is not going to go away. Once we get our heads around this, modifying our lives to take account of this while living life to the fullest possible extent is the next step. I changed my job to something less physically active after I was diagnosed, and managed to continue working until I was 65. But I can't pretend that it was ever easy!

  • Thank you for all your caring replies. I would just like to clarify that I decided to stop taking my medications and as some of you said I was taking loads (with diabetes, Rheumatoid , hypothyroidism, RLS, PTSD, chronic anemia & Vit B def. to name the important ones!!!!) I had overworked myself, and become overwhelmed and worn out (crach and burn) i usually only worked three days a week but the extra hours just crept up, a little here and there - "its only for a couple of weeks." i was working over 40 hours a week at one point. I have spoken to my boss and told him it is three days only if and when i come back No extras - if he wants that then he has to get someone else as well as me or instead of. at the moment I am not going to worry about it. .

    It is hard to explain, but the "magical "Island i live on is NOT part of the UK, we have a common purse agreement, we have our own laws, a governemwnt and parliment.(the oldest democratic parliament in the world) We do not belong to a "National health service" - although we have the same system it is not part of the UK. so we do ont have all the government targets and other departments like PALS.

    i have had four rhuematology appts cancelled one after the other, once forty minutes prior to my appointment when i was just on my way!!!!

    My GP has told me to take it easy as both my physical and mental state is very fragile at present, i seem to get quite angry and am suffering bad anxiety at times. i am going to take it day by day and all youlovely peopleake me feel better in knowing you understand - when i think i am alone i will think of you all and this is good. so thank you for my lifeline of hopefullness. wishing you all best wishes xxxxx

  • Can you and Jo perhaps get together and find someone influential in your own independent mini democracy I wonder? It sounds desperately needed judging from both of your stories. Tilda xx

  • I'm so glad that you have found some comfort and lots of encouragement from everyone.

    I know that the Isle of Man is a beautiful place, but I had no idea about the basic set up apart from having it's own parliment. Also, I can't imagine how difficult it must be without the NHS. Have you ever thought of calling the NRAS helpline to find out if they have any suggestions to make in a situation such as yours, just a thought (I might be talking out the back of my hat!!)

    Anyway, I hope you get some satisfaction sooner rather than later. I think perhaps Tilda's suggestion of hooking up with Jo might help you both, if you feel up to it.

    Take great care of yourself & hope to chat to you again soon. June xxx

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