Treatment plans

One of my problems associated with my disability is extensive chronic pain that I have now had for many years. One of the main problems I have is treatment can sometimes cause more pain and I become more depressed so I dread treatments that aggravate my joints. I am at that state now and I wish that they would just leave well alone and I would suffer my problems in some form of central place where I can just suffer pain in some form of level that I understand from my disability.

Now I am sixty four and was first effected by my condition way back in the mid seventies, it took the NHS several years to find the most suitable medications for my condition. So I have just had to accept my lot and done most treatments that have been recommended and now I am so tired with not only my disability also the Reactive Depression that I have suffered over the same given time.

Not complaining, the Staff of many clinics and Departments I have had to visit have been understanding and helped me greatly. My problem here is I moved to the far end of my County and now I am having to enter health regimes that were tried many years ago at my old address and sad to say my condition is slowly becoming more of a problem although strange to say treatments seem to be now effecting other joints so I seem to be suffering in other areas of my disability. So I suppose once they find that other areas are affected because of age that will again cause them to look at the full picture and it now concerns me that my pain medications will not be strong enough and the doses will need to be increased and because I have got used to them what is going to happen in my near future caused by age. This frightens me as now my medications can be very potent. and I have to manage my drug doses at what levels that give relief.

One good thing that the above has done is make me interested in the NHS and this helps me retain a positive outlook as I have been able to understand how the NHS works.

So now I suppose I will need to get on with my future retirement and hope beyond hope that I will be able to control my aforementioned suffering of chronic pain. We can only live for the day and have a positive outlook that amounts to an understanding of what is going on in my own body.

Life is one hard teacher and all I will do is keep, help and understand the problems associated with those patients with Mental Health disabilities and keep trying to improve all associated procedures in this extensive illness. Also help in the GP Patient Participation Group, because when you think about it this affects not only my treatments, but peoples experience of the NHS

BOB

[Gambit62]

Good to hear from you Bob.

Hope that you do manage to find a solution to the pain though it is a difficult one as people react so differently to different painkillers. Good that you are managing to keep involved and seem to be staying positive about things.

[Hidden in reply to Gambit62]

Hello

Hows life, at this time I seem to have to much on as we are putting our old house on the market and two months ago I took a wobbler and was not thinking positive and I was not functioning properly.

They always say five problems together try and drop at least one. Just could not work out which one. Now I cannot work out how I got to sixty four life just seems a blur at the moment. I was thinking was just in mid fifties. Wishful thinking.

BOB

[Hidden in reply to Hidden]

I feel for you Bob. I don't know how you live with chronic pain. My younger sister is in terrible pain right now with her osteoarthritis. Then she thought she had sciatica but it's not - it's this big muscle in her back separating which is massively inflammed. The doctor only gave her gabapentin (which she was on already) Napraxin and diazapam. He kept telling her to try and get up but that was impossible.

I had to ring them back Friday morning and they kept saying they don't want to give her anything stronger. I told them she couldn't even sit up to take her meds and was completely unable to go the toilet even! They then agreed to give her oramorphine which is the only thing which is helping. There is enough for the weekend so I guess I will have to get back on the phone on Monday to beg for some more. Doctors! She lives on her own too but fortunately she has me and a long term male friend coz we are having to do everything for her. If she didn't have us she would have been left to rot.

I do feel for your pain Bob though fortunately I haven't experienced it myself and hope never to. It's good you have found your own ways of dealing with it and keeping yourself relatively cheerful. It must be very difficult for you.

Bev x

[Gambit62 in reply to Hidden]

Life for me is good - taking the decision to treat myself for B12 has so turned my life around. Still have some problems - mainly with left foot and not having enough feeling in the sole but it only really affects me if I'm doing something stupid like deliberately standing on one leg ... so not exactly something I can't avoid. The left ankle is a bit naff and doesn't bend much - some tendon tightness but think a lot of it is just the way the bones have not healed properly over the years ... though have also read that B12 Deficiency can cause bone to grow badly.

Depression and anxiety seem to have sorted themselves out - which is something I wasn't expecting to get from the B12.

Feel a bit sad that i suffered for so many years because of a stupid vitamin deficiency ... get a bit angry with attitude of GPs at time (spend a lot of time on the PAS forum - basically for people with B12 problems) and the number that get fobbed off with anti-depressants rather than the B12 they really need can make my blood boil - especially if it's been a bit of a while since I last topped up my B12 levels. On Thursday morning I took a dose and then started a rant about the attitude of one GP that had annoyed me the previous night and by the time I'd got to the end of the second paragraph had mellowed and could move on to other things.

So wish that GPs were so much more aware of B12 deficiency in relation to psychological problems (though it's probably improved quite a bit over the last few years but still tip of ice-berg stuff) ... and it is so much cheaper than most of the anti-depressants they seem determined to dole out as sweeties.

I don't think there is anything wrong with thinking of yourself as younger than you are - pretty sure we all do it.

[Photogeek in reply to Hidden]

Hi Bob. You really have my sympathy , pain is very tiring and it can wear

You down. When I had my back pain in Summer, I felt disconnected

And alone. I had gone from a very active type to a totally inactive type.

Simple walking was so painful, I think you are great to have such a

Positive attitude in spite of the pain. All we can do is make the best

Of every day, and be grateful for what we have.

Sending you a big healing hug

Hannah

[secondhandrose2 in reply to Hidden]

Bob this comes after the nest response!

Oh Bob, I hadn't read any of this when I replied to you - but will leave the reply as you may find it helpful - or not!

I recall you have a lovely (big!) garden. We also have a lovely biggish house and larger than average garden - I replied to you before, maybe you remember? We tried to sell our house for 6 years and gave up after the stupidly low offers, and after a period of depression about that I have let go of the idea. We find it difficult to manage house and garden and in years to come it will be impossible practically and financially - but now we just live each day as it comes, after all life's too short to spend it worrying. Our garden is becoming more than a little overgrown, the house is no longer looking ready to sell, I de-clutter but then acquire more things - but meanwhile our stress levels have reduced and as a result the level of pain I experience has also reduced drastically. I am in general much less depressed than I was (though I must admit having a virus for 6 weeks knocked me right back) and have accepted things as they are. Whether they will change I don't know, but I do know I might be dead by then so now I just enjoy the days as best I can.

I do hope that helps a little, it's so hard being in pain - and getting older...

Suex

[secondhandrose2]

Hi Bob

I wonder whether holding onto hope that treatments may improve things is making you worse and whether the best thing for you might be to accept the pain and find ways to live with it gradually without treatment. I know that may sound harsh or unrealistic, easier said than done, but treatments that make you worse are no good and repeatedly finding they don't help will surely lead to despair. I had that experience recently - Pilates and I was left in excrutiating pain for days; chiropractice triggered sciatica which I hadn't had for years; Nordic Walking crippled my shoulders - recommended by well meaning health professionals who often can't tolerate the idea of NOT being able to help. I realise you will not like what I am saying, but sometimes a positive attitude can get in the way of going through the very different kind of depression that is a consequence of accepting things as they are.

I decided to choose whether to take up advice from health professionals, to take control of my own body and health of it. The one thing that helped me was accepting my anger about not being able to find the helpful treatment that I needed, because my anger enabled me to fight for my life, an unwillingness to allow the rest of my life (I'm also 64) to pass without my trying to live it to the full. Of course a lot of the time I fail and am in pain, and a lot of the time I do mindless things like look on e-bay or play patience on the computer, but sometimes I am surprised to find that I find things that manage my pain. I found taking Vit C & D & B12 helped ease joint pain, taking Rhus Tox removes muscle cramps(!), Duloxetine has just eased by joint pain much more and that is giving me the strength to get into walking with the Ramblers for the first time in my life - and only six months ago walking to the local GP surgery seemed too painful and too much effort.

I'm sorry if what I am writing makes you feel worse. I just feel that searching for solutions within the NHS when there aren't any is a way of holding onto hope rather than facing feeling depressed and dealing with that - your pain may be being increased by avoiding a different kind of pain.

Just food for thought, feel free to feel it's rubbish and ignore me.

Suex

[Marz21]

Hi there, your advice has helped me in the past, and I really see some positivity in your post here. I have struggled with depression since childhood. That and the issues with Ulcerative Colitis starting in my 20's, muskuloskeletal troubles starting and eventual diagnosis of the arthritis have had bearings and I understand your thoughts and feelings on treatments being tried and getting to points of acceptance rather than going ahead with more which have worsened other issues. It's like being in a torrential state of viscous circle! I really feel for you, but I also see as you have helped me, you will have helped others, and that is really something! Thankyou x

[Hidden]

Hello All

We have just returned from a few days in Scotland, in fact we came back early as where we go is out in the wilds and we have no broadband.

All your support and encouragement is really helpful and has helped me with this period of negativity. Most of my time recently has consisted of a great deal of uncertainty and this has basically stemmed from my old property that has had a great deal of damage done to garden and outhouses, in fact most of it has had trees and orchard ripped out by the Environment Agency and they have even taken all the topsoil away leaving ballast and concrete in its place and basicly left my land depleted of a mature garden and massive wasteland. The ironic thing is our property did not need these works, and it came to pass that they have done most of the flood works on our property without permission and it ended up they were going to take forced entry

Now we are having to get solicitors and barrister to take on this Quango who it seems is a law onto itself.

We let the property out for the last eighteen months and we have had to suffer a great deal of distress as the Tenant has proved to be very needful so it plays havoc with our expenses and it becomes a real problem and now we need too sell. So we are now having to get estate agents to give us reports and prices, although we feel possibly may have problems of access. Also a need too sell. It may cost us less if we were to empty the property.

So now I feel fed up with the whole sorry situation I find myself in and the treatments are just causing to much pain and now I am worse than what I have been for many years.

All the very best

BOB