Counselling?

Hello. I was wondering if anyone had received counselling after being diagnosed with RA?

My problems started four years ago (I'm thirty-eight now). Initially it was my toes, but went on to my fingers. I was on methotrexate for two years, but lost so much weight I looked like Christian Bale in the Machinist. About eighteen months ago it began to affect my heels, and I couldn't walk. I went on to leflunomide, but that just made things worse. Practically overnight my achilles tendons were affected and then both knees. I've been injecting Enbrel for three months now, but it's not working magic. I have a lot of difficulty climbing stairs and walking. The thing is, I look after my elderly parents (or try to), and they have their own health problems. I can still drive, so I do the shopping, and just about every day means somebody needs a blood test or appointment at the docs. I don't want to add to their problems, as they're worried about me as it is. I've gone from being a fit young man who never had a health problem, who enjoyed running, going to the gym and exploring foreign cities and art galleries, to a recluse who struggles to get upstairs. I'm just starting to come to terms with the fact that I can't do many of the things I loved ever again. I even gave my new expensive running shoes away, which was heartbreaking, but almost a symbolic gesture of recognition of my new limitations. I was just wondering if there was some counselling service available, as I'm having a bit of a hard time at the moment. I try to stay upbeat, but it's not always easy. Sorry for going on a bit.

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  • Hi roy_batty, sorry to hear of your troubles I think your first port of call should be seeing your GP or your RA team in regards to the counselling they may well be able to point you in the right direction. I think its sad you had to give up the things you love like the running but as we all know with RA we have to accept the changes to our bodies and move with the change, fill that void with things you can do stay positive I know that's so hard. I must also add how amazing I think you are to be taking care of your folks under such difficult circumstances. I wish you well hope you get the help you need. xx

  • Thanks, that's really kind

  • Hi roy_batty,

    sorry to hear that you having a tough time at the moment. I agree with Bazzypants that you should think about contacting your GP and see if they can refer you for counselling. You can also contact us at the NRAS Helpline on: 0800 298 7650.

    We are here to help and support you and may be able to provide you with information on how to manage everyday living. If you do have any questions please feel free to contact us.

    Regards

    Beverley

    (NRAS Helpline)

  • Thanks for replying. I think I ought to mention it to my GP. Thanks for the helpline, but I've a bit of a phobia of phones.

  • More later, but I've found helpline really useful by email.

  • Hello Roy

    I have had a form of RA now for thirty odd years, also depression, they have now given my diagnosis as Reactive Depression with a cut of mania. So I have gone through most treatments for my depressive state especially Counselling.

    If you are having problems with mood you could ask to be sent to a Pain Clinic and that will help you to develop skills associated with pacing yourself, relaxation techniques, and the use of a TENS machine. There are also further treatments associated with exercise and managing your medications. So discuss with your GP or RA Specialist.

    Generally if you are depressed medications may be given in the first instance for a time and if they feel you may benefit from further treatments they could refer you to a CPN

    Good Luck

    BOB

  • Thanks for this, Bob. Will definitely look into this pain clinic. It's not so much depression as adjusting to such drastic changes in my mobility. Never heard of tens machines - will have to look this up.

  • I have had counselling since my diagnosis but it was CBT counselling which tends to focus on finding things you can do not how to cope with not being able to do things. I didn't find it helpful personally. I tend to get depression from MTX and codeine to add to the mix. I have developed my own coping mechanisms over the years, mindfulness is good as it helps take your mind off anything that isn't immediately a problem. I have found no one in my family or friend circle is able to understand what you have to go through to come to terms with not being able to do things any more, they just don't get the devastation and mourning, I'm constantly being told to stop being negative and was recently asked 'do you ever enjoy yourself? Hahaha'. It is hard to be positive so I just shut up these days. It won't hurt to ask your GP but there is probably a very long wait. You can get books out of the library that cover what is covered in CBT therapy. xxx

  • And there are great mindfulness resources online especially at Oxford mindfulness centre

  • Thanks Cathie - I'll look into this

  • Thanks so much. I will look into this mindfulness business, as I've only just come across it. I don't think I'm depressed so much as having difficulty reconciling myself to such drastic changes that have taken my life over. Devastation and mourning is exactly right. I've not thought of it like that before, but it's like so many things I've wanted to do just aren't possible any more. It's hard to let those ambitions go.

    I like your name -dogroses are my favourite. My granddad would hold my sister's hand when she was little and say 'like a briar rose on a shovel'.

  • Hi there

    I read your story, and I really did not think about responding. So many of us are in the same boat. But something just connected in my brain. Your situation is quite like mine and could not leave you without some hope or a more positive outlook. I have had to retire and yet I was a self-employed practising clinician my partner is the practice manager, who also happens to be partially sighted (very), therefore, shopping cooking and cleaning fall onto me as well as the dreaded chore IRONING, how I hate it. Now my Mother is very poorly, and sadly on that horrible slippery slope, that we all have to face at some stage. I am not really sure how I am coping, because stress always sends me into a flare up. At the moment it is really niggling. Your story made me sit back and think about how I am coping with all this and travelling up to London every 8-10 days. I happen to have IBS and have been put on a low dose of Amitriptyline and this has helped the IBS. However, around three years ago I did reluctantly did admit to my GP that I was peed off to put it mildly. I refused counselling because I have over the years developed my own coping mechanism, so he simply doubled my dosage of Amitriptyline to 50 mg. That is actually an anti-depressant, but at that dose no way will it have therapuetic effects as an anti-depressant. One condition he made was that I saw him a little more often to keep an eye on me. Stupid me fell for it and he was counselling me piecemeal, with the odd telephone call. The crafty so and so led me on the path he wanted me to tread. Unfortunately I reacted very badly to Infliximab and needed emergency surgery, which very unfortunately for me then led to Pulmonary embolisms. I really thought my time had come, and even said things too my partner, that really should be said to your loved one. So many people never get that chance and it can be obviously too late. Anyway enough of the dramatics we never need to say those things again, but they have been said. The upshot of all this was that my left lung was very badly damaged and was put onto a low dose of morphine, amazingly I now never get a problem with IBS, but my lung pains lessened. But not enough so I was referred to a pain consultant who cut my morphine to a real minimal dose, 10mg twice daily, but put me onto pregabalin which helps with neuropathic pain and it has been wonderful but best of all my arthritis is so much easier to cope with. In my Trust area, gabapentin and pregabalin (sister drugs) may only be prescribed by a hospital consultant, my GP wanted me to have that but there was not a clear, salient point he could use to refer me to the consultant.

    I apolgise if this goes on a bit, but your message has made me realise how I have been able to cope. You will too.

    Be persistent, yet adamant with your GP or Rheumy team that you need help now, not in six months. Talk to others in the same boat, it really does help. If offered anti-depressants give them due consideration and negotiate with the prescriber that you wish to start on the lowest dose possible, with the option to increase as needed. You are taking an active step and decision that will take you on the right path. I so hope I have not bored you, if I have I'm sorry, but give anything a try, and good luck. Get a hug now and then, they're great.

  • Thanks very much for this. I really don't want to go down the antidepressant route. I'm just having difficulty reconciling myself to such massive changes that have turned my life upside down so rapidly. I've heard it likened to a grieving process, and I guess I'm still in denial. I wish you the best

  • hello roy_batty, I know it is hard at first, but we can get used to anything in time, and learn to cope as best we can, I too was diagnosed when I was thirty years old, and it is as determined to bring me down as I am that it is not going to, I am old now and had this for 40years and have not one joint that works. but still manage and enjoy life, so keep up your spirits regards Rita

  • Thank you for this Rita. I'm determined this won't get me down. For a long time I was still able to get out and about, and this sudden loss of mobility has come as a real blow. What I used to love was to go exploring by myself - get a map of some European city and just walk around exploring all day long. There's no way I can do this now, and it's hard for that to sink in.

  • I think that you may benefit from a review of your treatment. If embrel isn't working that well maybe another biologic will? There's nothing inevitable about going downhill. I've go pen through periods of not being able to do stairs and then doing them. More recently I've had a tough time but I think I'm getting out of the deep hole. I've found that meditating helps. My taji teacher did a couple of guided meditations and that really helped me to find a good place. I've had counselling over the years but not really for RA. I think accentuating the positive may help but there are reasonable reasons for feeling depressed. It may help you look for support in looking after your parents. Could the tests etc they need be dealt with at home? Sounds as though they may need care support and that might take the burden off your shoulders.

  • Thanks Cathie. That's so true about it coming and going, isn't it? I think meditation might be useful. I think I need to learn more about pain management.

  • Hi roy_batty

    So sorry you are struggling, you have so much to cope with it's not surprising! !

    Firstly, your self. Please do speak to your gp, and as others have said don't reject antidepressants if offered, give them a try. But also ask about counselling, I can recommend psychotherapy as opposed to CBT, there might be a waiting list, but worth hanging on for.

    Next, your home situation. Have you thought of approaching the social work dept, to see if they can offer any services to lighten the load a bit? It is also something you could raise with your gp.

    Most importantly, you aren't alone now, this forum is great for support and advice.

    Hope things improve soon. M x

  • Thank you. I'll look into this psychotherapy. The home situation is manageable, but I'll most likely require some help in future.

  • Hello Roy

    My GP was an understanding person and with the CPN arranged a Pain Clinic and from that , to keep me busy sent me on available NHS courses over an extended period of time. Then they got me into a Mental Health Befriending Agency

    This gave me a interest that I have had for a while now. It now seems I will be assisting people with mental illness in my new area. Strange the GP was a good person who picked up an interest I had. And allowed me to run with it. I will be always thankful to Him

    BOB

  • As others have said, your GP should be a good place to find out what's available in your area. If there's a Wellbeing Service in your area it would be well worth contacting them as they have a number of ways of helping, from group sessions to one-to-one therapy. Otherwise, Mind will definitely be able to help you - many people don't realise the help with the fall-out from stress but I went to a Wellbeing workshop recently and was surprised how much support there is out there. Whichever route you take I hope you're soon feeling better able to cope x

  • Thanks very much for this. I'll look into these things.

  • Hi, It really saddens me to think of someone so sporty and previously fit going through such a hard time. I was in a similar position. I was a kickboxing instructor doing sparring competitions and running, cycling etc in my spare time as well as being a college lecturer (ie stressful job).

    My diagnosis hit me like a ton of bricks, I cried myself to sleep many a night and sometimes still do. I thought I was going to lose my partner as we got together due to our love of sport and I thought my life was worthless without sport as I lived for sporty outdoor and indoor activities. At this time I was referred to podiatry to help me walk again and to physio for various issues (walking and moving arms to dress etc) - podiatry were sympathetic and said they could help me, but Physio told me I was unrealistic about my diagnosis and I had to come to terms with it and recognise that my life had to change..... so still further down I went.

    HOWEVER, I went to one of NRAS's information days where they had a Rheumatologist with a special interest in cardiology and they also had a physio there. Both told me to go back to the hospital and keep fighting cause on the right meds I should lead a near normal life (I made them confirm sedentary normal or sporty normal - they said sporty). They gave me evidence of how sport can improve our joints and thus prevent the degeneration of our condition and how it is vitally important so as to prevent other issues like high cholesterol and heart issues. I went back to my consultant and told her - she agreed and is working with me to try different meds to help me.....

    I am now back at the gym, I go cycling 25 miles sometimes, I go walking (maybe slowly when the pain is there), but I have even done a little jogging on the treadmill once more.

    Please dont give up - if sport is your life speak to NRAS for examples of people still doing the sport they love.... please, please, please believe you can (just a case of finding the right medication first).

    Hugs

    Tina

  • Thanks so much for this Tina. I'd like to speak to a physio, and I'll look out for these events, and ask my specialist. I try to do some stationary cycling every day (even if it's just ten minutes) since running's out. As little as four years ago I could lift the full stack on leg extensions and run 5k every night. Now, putting socks on is a challenge, and getting to the top of the stairs calls for a Rocky-style celebration. These changes are very hard to accept lying down, and I think there should be more guidance.

  • You are one in a million Roy.....I don't know how you keep going. It doesn't surprise me that you are starting to wilt. As others have said you should contact your rheumy team. They are the ones with their finger on the pulse. I'm waiting to join a group of people who get together to talk about the changes in their lives since recently being diagnosis end with a life changing disease.

    Also Roy I want to say to you that you really shouldn't give up just yet. You don't mention what drugs your on......like you I was at my lowest edd about 18 months ago. I had lost my partner, he couldn't cope with the change of lifestyle. I lost my entire social life. I couldn't walk, comb my hair, drive, dressing myself was agony........my life as I knew it was gone.

    However in time I was put on biologicals. The first three didn't work but the one I'm on now has given me my life back. It's different from my former life but it is still very good. I can do all the things that I could do before. I walk my two dogs everyday in the local park. I have started to go out socially again maybe only once or twice a month but I get out and I have a drink with the old friends that did stand by me.

    What I'm saying is that you shouldn't just give up. There are really wonderful drugs available now. One of them has been a miracle drug for me.

    I admire you very much and I do know how very difficult it can be to face another day of the physical and mental torture that comes with this disease. All the very best Roy. Jean.

  • That's really very kind of you. Thanks so much for those lovely comments.

  • Hi there I was diagnosed at 21. It is hard sometimes. I think you should go back to Rheumatology and say you are still in pain as there are other biologics you can try. I would also ask them if there is any counselling as depression is just another side effect of this wonderful disease! I try and find other things to do to keep positive and just take each day as it comes. If I feel rubbish I just do what needs doing and leave what doesn't till tomorrow!

  • Thanks for this Louganis. That totally sucks, I'm so sorry. You're right - this Enbrel doesn't seem to be the miracle I was hoping for. I feel like that - afterall why put off till tomorrow what you can put off till next week!

  • Lol so true! I had a bilateral knee replacement 3 years ago now and that has made a huge difference to my life as both my knees were bone on bone ouch! My moto is take the drugs and rest. Try not to get caught in the cycle stress creates pain and pain causes stress! Automatic car was a godsend. Over time I have found my own little ways around things but I don't worry or stress about the unimportant eg if the kitchen work surfaces are clean who really cares about the floor till I feel up to it! also if I have visitors they are told I am glad you have come to see me and not my house!

  • Hi Roy,

    It sounds as if you have a lot on your plate at the moment. I was also diagnosed four years ago (when I was 32). I used to be very active and went running every day at one point. I identify with going through a kind of grief for the life that I'd had, and I'm trying to get used to a new 'normal'. I think everyone's experience of counselling/psychological support is different. I first had counselling in my teens which I didn't find particularly helpful, as I was just talking about my feelings and it wasn't solution-focused. I preferred CBT as it taught me to see things in a different way. I'm currently having CBT for health anxiety (and PTSD) as well as doing a mindfulness course. I would also recommend a pain management course (I did a 1 day one) which I found useful.

    I think if the Enbrel isn't being particularly effective after 12 weeks it might be time to talk to your rheumatologist about switching to another biologic. I've been told to give the Enbrel 12 weeks, but it may be different at other hospitals.

    I think it's important to hold onto hope and the possibility of drug-induced remission. I remember being amazed when my rheumy nurse told me that she had a patient on Humira (and was in remission) who had just run a marathon! I hold on to the fact that things can get better and I compare myself to myself rather than other people, if that makes sense. I think a lot of it's about pacing and setting goals. Rather than running, what about walking? I try and walk a certain amount of steps each day using the pedometer, although recently I did way too many one day and hardly walked at all the next! (forgot to pace).

    I know it's hard to socialise when your energy levels are low but I go out with friends when I can. I don't go out as much as I did but when I do find it really helps distract from my health. Keep talking to mates, your family and health professionals. There is support out there and there might be a better drug option apart from the Enbrel. All the best and take care. Fran

  • Thanks very much for this, it's exactly what I'm after. Can I ask who provides CBT and the mindfulness and pain management courses? - I'm very interested in pursuing these. Next week is Enbrel number 12, but I did have a setback with a flare-up (thanks to Healthcare at Home not delivering - another story), so am still hopeful for this med. I have had some improvement but not much.You've given lots of great advice -thank you. I try to walk into town when I feel up to it, and I'm trying to build some strength in my legs with an exercise bike, but nothing too strenuous.

  • Hi with regards to mindfulness I'm not sure where you are but the Buddhist centre in Bethnal Green was great for me..I did it a few years ago for recurrent depression prior to diagnosis. Gp should have info other wise mind should be able to help. I'm newly diagnosed and know that so far my illness is mild but even for me it has been life changing with regards to having the energy to exersize which has been central to my life for 20years. Fingers crossed that we both get back to exercising soon.

  • Thanks for replying. I hope very much that you've got on top of this illness early. It took a full year for me to be diagnosed correctly, even though I kept telling doctors what it was, as my dad suffers too. Early diagnosis is crucial. I've exercised all my life, but I now subscribe to the 'something is better than nothing' school of thought, and don't push myself. I'll see if there's something held locally, as I live a long way from London.

  • CBT was arranged by the local authority. My GP referred me and I see a psychologist regularly. The psychologist suggested mindfulness courses in a group for free but as I couldn't be there at the same time each week (due to so many health appointments) opted to do an online one you have to pay for. I'm in London so not sure how it works elsewhere. Cathie's suggestion about online mindfulness resources is a good one. The pain management course was actually organised by a different charity I'm involved with - it was aimed at people who have Ehlers-Danlos Syndrome (a connective tissue disorder) but I'm sure there are similar ones around. I've just found these links from NRAS nras.org.uk/help_for_you/ra... and this from Arthritis Care: arthritiscare.org.uk/Public... Sounds good to keeping going with the Enbrel if it has made some improvement - I am also going to keep persevering with it. All the best, Fran.

  • Thank you very much Fran. I'm new to this forum, and I'm genuinely overwhelmed and extremely touched by all of these responses.

  • Have a look at the EPP website. If you can't get to a course (best) you can now do the course on-line. It's about self-managing your long-term health condition.

  • Thank you - I found the Expert Patients Programme, I'm presuming that's it. They don't seem to have anything near me. Have you done the online course? Is it expensive, and would you consider it worthwhile? It looks like something I'd be interested in.

  • EPP is funded by the NHS, so it's free to the user. The courses are one half day a week for six week's in a small group of about 12-14 people all with long-term health conditions.

    I did a course some years ago and found it very useful - although I knew, in theory, about most of the tools that they use, I hadn't really applied them to me. Now I use them in my everyday life.

    I've trained to be a tutor (all the tutors have long-term conditions) and help run the courses in this locality in Wales. I don't know much about the on-line course as it has only just been set up so no feedback yet.

    I've seen the most amazing changes in people who were really weighed down by their illness and felt that life wasn't worth living when they started the course, but feeling positive and able to help others by the end of the course. But like everything you get out what you put in, and it sounds as if you are the sort of person who puts a lot in!

  • Thanks very much for this info. I'll be bringing this up at my next six-monthly meeting with my specialist, which is in a few days time.

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