Advice please at my wits end here so low have RA

I have Rheumatoid, Psoriatic and osteo arthritis. I am currently on these medications Sertraline 100mg 1 Bedranolol 160mg, Cyclizine 50mg twice daily, Folic acid 5mg, Tramadol 50mg 8 caps daily, sulfasalazine 500mg 6 tablets daily, Leflunomide 10mg, Lansoprazole 30mg, Methotrexate 15mg, Golimumab 2 smartject pens, Vit B12.

I suffer fatigue and tiredness every day but fight it all the time. I have an overactive autoimmune and am immunosuppressed. I have depression and anxiety also cap in hand with arthritis I been told.

For the past 2/3 months my husband is saying that I am moaning and groaning in my sleep every night and thinks I`m not getting proper sleep the thing is I am asleep doing this moaning. Yes I am exhausted every day but fight it and keep myself awake so I sleep at night. Yes I am depressed that my husband does not understand nor wants to understand my illness like I am putting on my symptoms or making them up. I am so low because of the treatment I am getting from husband for past 2/3 months I dont want to wake up or could disappear but cant. i`ve tried talking to him but he is so headstrong he knows better. Need someone to talk to please

19 Replies

  • This is such a tough number. It's not unusual for people to completely fail to understand autoimmune illnesses, but to get that dismissiveness from your husband must be really painful.

    I don't have any specific advice for you, I'd find your situation really hard to cope with and I'm sure you've wracked your brains for ideas.

    With the fatigue you are experiencing it must be hard to get a fresh angle on things. Maybe coming on here, 'talking' to people & thinking it all over will indeed help & begin to turn things around. Have you thought of phoning the NRAS helpline as well? I'm also wondering whether your GP and / or rheumy know just how unhappy you actually are? They might go the extra mile to help if they knew exactly what you're going through.

    Just one thought, has your husband ever accompanied you to rheumy appointments? Or maybe some form of counselling? It's possible that he's in denial about your suffering - maybe he can't handle it - rather than being purposely unkind.

    I just think there are always answers, always possibilities for more happiness if you keep looking. And I really, really wish you well.

  • Postle has answered this post much as I would have StiffenLady. Another member recently posted about the lack of understanding she felt she was being subjected to from her family too so this might be worth reading so you feel less alone.

    I do remember a stage where I would wake to find myself crying out in pain because of various joints locking and being excruciating to unlock. It would wake my husband too and as he works nights this made me feel guilty. He never really accepted that I was asleep when the crying out loud started - and still struggles to acknowledge that I'm stiff or in pain because of RA. But I think this is because he is in some denial about me having this disease at all - and as I am myself finding it very hard to accept I feel some sympathy with his lack of acceptance too.

    Your husband's attitude sounds more extreme however and I think you really do need help - perhaps some relationship counseling if you could tell your GP just how low and misunderstood this is making you feel? I hate the idea that you don't want to wake up or wish to disappear. Please do seek some help very soon - I'm sure the NRAS helpline would be a good place to start as Postle suggests. They are very kind people and would be able to advise you much better than I can I am sure. Take care and I do hope you can get through all this and come out the other side feeling much more positive soon. Tilda x

  • HI, I feel so sad for you, it is such a black place to be,perhaps talking to a counsellor would help. My husband finds it hard too, I have RA,Fibrom, depression (take sertraline also).and something very wrong with my stomach, I think denial is the easiest way for them to deal with it, also I know I do go on, not saying you do. So sometimes I think he must be over it all nearly as much as me. Personally I don't think we can change their behavior, believe me I have tried for 44 years, so now I try and deal with it myself or share my feelings with a good friend. I understand your exhaustion, its all part of this disease, try to have "you time" and relax. You must tell your doctor where you are at with all of this. Please take care and know people are with you in thought. Trish

  • Really feel for you & can only echo what has already been said. It must be really hard for partners to understand what we go through & I think especially men who are maybe used to tackling problems full on & putting it right & there is no solution but a kind word or a little bit of understanding wouldn't go a miss. You take care xx

  • There are so many dimensions to this. I can understand you being afraid to get into chaotic sleep patterns but have you tried a 20 min snooze in the day. Set an alarm, try not to go for longer. It can be very refreshing, I hope you get more understanding

  • You poor thing, you are having a hard time on all fronts. I too hit a low point in my disease when I was exhausted and couldn't cope with any more on my plate. That was the point when I started to reach out as you have done and find sources of support. The NRAS helpline was great, and gave me loads of pointers to other sources of help. I wept all over my GP and he referred me to a counsellor. I joined various groups on Facebook which helped me to feel less alone, and gave me people to chat to who actually understand what this is like, much in the way of this group.

    Maybe start by making a list of what the specific parts of the problem are, with arrows connecting the parts that are linked, eg problems with sleep and problems with your husband, then go out and talk about that list to everyone who might be able to help. Your specialist nurse, if you have one, may be able to help too.

    I really hope you can find the people who can give you the practical help you need, as well as some more ears to listen with alongside us.

    Dotty xx

  • Hello Stiffenlady

    You have had some great advice from the others here and there is nothing else I can add other than to let you know that we feel for you, understand what you are going through and will support you as much as we can.

    Sometimes our loved ones feel anger at our condition (it alters their lives too), unfortunately this anger can be misplaced and directed at us rather than the disease and our feelings of guilt then add to the communication difficulties. Counselling can be really helpful in untangling these emotions.

    Have you spoken to your husband about how your sleep disruption affects him? I know that a surprisingly high number of people on this site now sleep in separate beds from their partners in order not to disturb one another. I do understand that this would be a big step to take but it really may make a difference to his attitude.

    Good luck and take care. xx

  • Hi I posted about my family not understanding but for me was a blip not a permanent thing .. im new but sulfa triggered severe depression and I tried to harm myself. . First time I admitted tgst xxxx I now only on two and felt better instantly. . Tramadol is famous for these side effects too xx ask yourself is your husband attitude just to your illnesd or is he like that in general

    . My hubby has now read all the literature and has been to appts which helped a lot xxx I have psoriatic too which I found hard not feeling attractive etc .. my hubby sleeps on sofa some nights so I cam thrash about and it helps .. all I can say is it can get better but its bloody hard and this is a safe place to rant xxxxxcc

  • Hello BOB here

    Sorry for your pain,

    It has been over twenty years since I first began to suffer from your condition, it never gets any easier over the years and the infernal fatique caused by the overactive immune system is horrendous.

    We are not helped by the types of medications we take and the contraindications again effect our life choices. We all need support from many and understanding from our nearest and dearest, life can be hard when this is not shown from people who are supposed to love and stand by us.

    Your medication regime sounds really heavy and will knock you down even further, have they not recommended a reduction in them for a time, I hope they are watching your bloods.

    One charity with a good web page on your condition is PAPAA , they have many booklets that may help you partake in helping yourself with your condition

    If you need further support you know where we are I have noticed that you have been on the hidden Illnesses site in the past.

    You need to understand that your GP is in partnership with you in providing medications and treatments, He may be able to send you on a Pain Management course, That should help.

    Good Luck


  • Stay strong honey, it will get better, I do hope you take the advice and speak to NRAS.

  • Just remember you're not alone! Lots of us have problems when family members don't understand, quite often they want us to be the person we used to be, and that's impossible. Your GP may be able to direct you to more support, and as others have said, the NRAS helpline is great. There will be better times, meantime this site is always here! Hope you feel a bit better soon. M x

  • Hi Angel

    I'm so sorry to hear your really suffering and with no support for your partner as well, you deserve a medal putting up with him!!!

    I have a special poem that I give to people who are in need of some comfort and support and you definitely need plenty of that.

    When angels sense you need them

    And angels always do

    They come unseen from everywhere

    To help and comfort you

    They hover close beside you

    Till all your cares are gone

    Till they can see you're ready

    Once again to carry on

    Then some of them fly away

    And take their gentle touch

    To other hearts that need the love

    Of angels very much

    But one at least stays with you

    As your constant friend and guide

    For guardian angels never leave you

    They are always by your side!

    If you can print it out and put it where you can get most comfort from it!

    Take care and lots of gentle hugs and angel blessings xx

  • You poor lady, I can not believe how many drugs you are on. I got choked when I read how you are feeling & the lack of support you are getting.

    Being new to this disease the only advice I can give is, use this site as much as you can it has a fantastic network of people that are really helpful and kind & you realise that you are not alone.

    Take care, Christine

  • so to her your going thought bad times i am in that place , i take one step forward and 6 back been like this for 3years , all they say is have a another tablet , to help with all the other tablet , i have been seeing a counselor which has help a little , it has taking me 2years to to orthopedic , i am going in hospital on the 10th march for manipulation, and injections in to toes , i do hope it works so i can walk abit for the summer coming , so try an push your GP , take care , joanne,xx

  • Please let us know how you are - I think sometimes when you get a lot of replies it's hard to think of what to say in return. But I'm sure I'm not the only one who is hoping you'll come back here and talk things through.

  • I feel the same sometimes and it's hard to pull yourself out of a low mood. I seem to sleep a lot too, during the day as well as night and feel like crying over anything. My boyfriend and his family don't understand as they say I'm to young to feel like that (which doesn't help) and I shouldn't be getting pain in my joints. Having a good day today tho even tho I'm very tired. Always happy to chat, maybe we could cheer each other up :) hope you start feeling better. Kirsty

    Ps I have RA

  • Hi Stiffenlady,

    Please do call our helpline number, we are open 9.30-4.30 on weekdays and would like to hear from you. You can call 0800 298 7650 or email to speak my colleagues. I hope by doing this and seeing all these supportive comments here that you will be able to get through this difficult time.

    Best wishes,

    Ruth Grosart

    NRAS Digital Media Coordinator

  • Thank you for all your very kind messages these messages are kind thoughtful and a great great comfort to me. Been to see my GP today and have been taken off sertraline 100mg to Ampitriptaline 25mg to see if it helps. My blood pressure is getting back to normal another blood pressure reading & weight and blood test in the morning. I have being losing weight rapidly since end of Dec 13 when I became poorly with gastroenteritis & dehydration. Am going to give the helpline a call tomorrow for help & support and information to pass onto my husband to give him some idea on this disease. I am still quite low and beside myself and have had a bad weekend. Thank you all and appreciate all your support xx

  • Hi I can sympathise with all of your symptoms and also believe that the docs only deal with the RA and don't really consider our minds and spirit ! I have decided to reduce my meds and concentrate on my diet, stress and exercise levels. I am lucky as I am due to spend time in Greece where my sister lives (a month at least) I aim to see if I can have an impact on this disease by changing my lifestyle and concentrating on sorting my mind out. Your husband sounds like mine did a while ago, it doesn't help him being like this, have you tried showing him this site and getting him to look at how other people deal with things. I finally got through to my husband that him helping me didn't work if he didn't help me how I wanted to be helped but how he wanted to help if that makes sense..... Please talk to your GP and if they don't help try another one, I know it's hard but you have to hang on to you and believe that you will come out of this.

    Steph x

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