Fed up, In pain, Trying to Carry On.

mates

I am sorry to vent but I have to somewhere.

I have been to see my GP today to ask for pain relief and support for the arthritis in my neck. I have had a miserable few months with it and just had an awful week. I feel everyone in the medical profession has given up on me and it doesn't matter that I can work little (I am trying to run a business with my Husband) and I am having to give up most social activities and I now can't drive due to the intense pain when I do.

To put things into context I will explain briefly the last 25 years of my life. I understand that some of you are much worse off so please forgive my indulgence, I just need to rant and then will feel better.

In my early 20's I started getting severe back ache in the early hours on a daily basis, this has stayed with me since although I have had the occasional respite. During this time I held a responsible job and got on with my life. Around the same time my hips could hurt like crazy but it was occasional and I was told it was sciatica. In 2004 my hips became more painful, by 2008 I couldn't walk unaided. By 2009 I couldn't sit let alone walk much of the time. I had severe FAI in both hips diagnosed with lots of tears and damage in the hips. In addition both hips sit in the sockets at the wrong angle so don't work properly. I also developed an inflammatory problem in one hip which caused much of the pain in that hip and was simply unbearable. Five surgeries later one hip was replaced (May 2011) and the other has been scoped but is deteriorating again.

Last summer I started getting on with my life again. I started going into work rather than working from home, started driving again, walking, keep fit and the love of my life - singing. My shoulder got more and more painful and this was found to have calcium deposits in it But after the pain became very severe in November it was diagnosed as Cervical Spondylitis rather than a pure shoulder issue. After months of physio I now have a referral to a musclo-skeletal clinic.

Today I saw my GP who has prescibed me something to help the nerve pain but when asked what help I could get to assist with day to day living I didn't get an answer. I also asked if some people were prone to arthritis (as well as my hips, shoulder and my neck I have been told I have it in both thumbs and struggle to hold a pen) he said no and that I may well have a pain problem rather than arthritis - WHAT! He has said this sort of thing before because my hip problem was complex, he didn't understand it or didn't want to, and so said it must be a pain problem. My hip surgeon even rang him and advised him what to prescribe as he was being so unhelpful.

He is sending me for an x-ray prior to my clinic appointment and has prescribed me nerve pain pills but to be honest if he had done neither of those things and just said that I could get some support I would have felt better. Is there any service out there which can advise on how you manage day to day living? I asked if this was Pain Management and he said possibly but I would have to wait the out come of scans etc. before I could access this service. In the meantime I have to give up singing, driving and much of my work and he doesn't seem to care a jot. I live in a village so not much choice on the GP front but I will certainly not see him again.

So sorry but I just needed to have a jolly good moan! Thanks for listening and I feel calmer for writing this down.

stickywicket

I'm glad you feel a bit better for writing this down. I'm sorry your GP's been so unhelpful. You say what you'd really like is some help on day-to-day living. Would a chat with an Occupational Therapist help? Or, you could look up your nearest DIAL http://www.dialuk.info/ They're pretty good.

barbara12

Oh Mates
I am so sorry to read how unhelpful your GP is, if they had the pain maybe they would sympathise , I had lots of trouble my GP, and ended up changing , my new one has been a lot more helpful, and doesn't mind listening to me.
And dont you apologise for the moan iy will really do you good to get it all out.
I do hope you get some relief very soon and some help come to that.
You take care.x

dreamdaisy

Oh dear, Mates, poor, poor you. I am so sorry to read your post and I understand all too well the frustration of feeling that you are not getting very far with the medical profession. GPs are just that, general practitioners, which means they know a little about a lot but not a lot about a little (if you see what I mean). I don't think that yours is being deliberately obstructive per se, he is just unfamiliar with the range of arthritic conditions and in how they affect people. I think it was a good thing that your surgeon contacted him to offer prescribing advice as he will have a better understanding about these matters than your GP. Those who are basically healthy have little idea about how our lives are turned not only upside down but also inside out, neither do they fully grasp the difficulties, frsutrations, irritations and ocacsional bouts of despair that being in constant pain can cause. We, on the other hand, do.

What assistance are you thinking about with the day-to-day living? Actual physical help or exploring the gadgets and gizmos that are out there? Are you in touch with your local Social Services at all? They can advise about adaptations to the house etc (leastways, I think they can - mine were the people who provided me with a raised loo seat and new handrails for the stairs: everything else I've bought for myself). I too would like to attend a pain management clinic but their places are rare so I'm not holding my breath over that one! Have you thought about ringing the Helpline here? They are very good at listening and they are informed and understanding about how we are affected by things. I wish you well and I hope the vent helped. DD

mates

Thanks so much for your fast replies. You have made me feel less alone.

I think the help I feel I need is practical help with carrying on with my job, driving and hobbies. I think maybe driving is out for now and maybe the advice for everything is to do them in short bouts but that really isn't practical. I wonder if there is something out there which would allow me to sit at the pc or stand with my head up to sing so I don't get the pain. Maybe I am dreaming. I did also ask my physio but she can't help. In fact things with my neck are so bad she has referred me for accupuncture as it is untreatable by physio at the moment.

stickywicket

One of the hardest things about all this is that we’re all different and all affected differently.

Job. I believe they should make reasonable changes/adaptions but you might get more replies for this on the ‘Working Matters’ forum.

Driving. What precisely are the problems? What I mean is, there are lots of adaptions about but you’d need to tell someone just where the problems lie.

Hobbies. I guess it depends what they are and how/ if you can adapt/make adaptions.

PC. Again, it depends. Would a neck brace help? A different chair? Must it be a PC not a laptop?

Singing. In public? Solo? Choir? I guess some choirs would allow you to sit but then you’d need to be looking up even more unless your chair could be on a platform.

I’m sorry, mates, I don’t feel I’m being very helpful but it’s hard to second guess things.

julie47

Hello Mates, I am sorry that you are feeling so fed up at the moment and the fact that your gp is so unhelpful.
I hope that the tablets you have been given help to ease a little of your pain and that the xray gives the consultants an idea of why you are in such pain.

Sorry I am not much of a help just wanted to send a few hugs (((((((((()))))) and hope that you start to feel better soon.

Juliepf x

mates

Thanks again for your replies.

I work for my own Company and we have adapted an awful lot of things around my arthritis. It is funny being on the other side if you like - I mean as both employer and employee. We have had to employ someone extra over the past few years to manage the physical work I can't do and we have bought portable pc's so I can work anywhere. Last year I did our year end accounts lying in bed while in sheer agony as unfortunately the business can't stop when I need to. In saying this it has given me an interest and something to keep me busy when others would have had to give up work and be facing trying to get Government Sick Pay which I understand is a nightmare. I thank goodness for my wonderful Husband though as if it weren't for him we would have had to close the business as I just couldn't have managed it.

I am not sure about the car as I just cannot sit with my neck up for more than a few minutes. My GP says this sort of thing usually clears up (my physio says otherwise in my case) so long term adaptations are in the balance at the moment.

I stand to sing in a choir, have tried sitting but it is holding my head up which is causing the problem. I am supposedly in a national competition in May but I really think I will have to back out which is such a shame and I really am letting them down.

So to get advice on day to day living/aids do I speak to an Occupational Therapist then and does my GP need to refer me?

Thanks so much for caring - you have warmed my heart!

Thanks again.

stickywicket

I’m afraid all my replies have been ‘bitty’ ones as I’ve had to rush off to do something else each time and this will be no different.

I absolutely agree that, having an interest – even if it’s simply how to keep your business going – is better than not.

Wonderful husbands are treasures indeed. I got one of them too. (Grumpy at times. Still doesn’t notice dust, dirt or untidiness but, after all, he’s a bloke. )

I wonder if there might be any cheap car adaptations you could easily attach/detach.

I’m sorry about the choir competition if you feel you must back out.

Anyone can self refer to OT. You can go through Social Care Direct Tel. No. 0345 60 80 191 but I don’t know how long the wait would be. DIAL UK, whom I mentioned earlier, also have an OT at my local branch and you can ask to see her.

Sorry, dashing off again now. :roll:

suzygirl

Hi, sorry you are iin so much pain. I haver cervical spondylitis and am having my first acupuncture session tomorrow. I could not manage without the gabapentin I take, it makes life bearable, neckwise. I also have tramadol, methocarbomal and mst.

I am unable to drive at present as advised by gp as can't turn head, the muscles are so spasmed, that they wont let my neck move. Manipulation and traction eased for a day but it came back. My physio is brilliant and totally understands how I need to be driving.

Would a collar enable you to hold your head up? Once the painkillers do their job? Could you sit with neck supported by cushions to sing in the choir? On a garden lounger with maybe a 'v' pillow to support neck?

Speak to occupational therapy, your physio can arrange it for you. They make life easier with adaptations etc. Physio should be helping, lets hope the acupuncture helps, lots of people have said it does.

I wish you well, when you are worn out with pain, it is not a good palce to be.

Folara

Hi mates.

Its good to vent sometimes and at least here it is with people who are in similar situations and can fully understand where you're coming from.

You're not alone in having to fight to be heard by the GP's etc. it has taken me nearly 18 years to finally be 'heard and believed', yet saying that with the recent problems in my neck and right shoulder I feel like I am again banging my head against a brick wall.

I recently got sent to a Pain Clinic, which I was really scepticle about believing it would be more of the same and not listening etc. I was VERY surprised as the Consultant listened to everything I said and explained so much to me and has now started me on a proper Pain Management Programme. He understood that I would never actually get fully better as I have OA in so many places but he wants to make sure I can live as free of pain as possible and get me back to a place where I CAN do some of things I love again.

Good luck with it all and come and rant whenever you need.

Fols x

mates

Thanks,

You are all making me feel so much better about things. I am not expecting a miracle and learning to live with the Pain is fine with a little help.

My GP is a nightmare and a real ditherer! He told me last year (and a consultant) that I couldn't possibly have an Inflammatory Arthritic condition because I had a blood test in 2003 which showed no such issue! The Rheumatologist wrote and told him that yes I could and things could often be missed by other surgeons on scans etc. Trouble is I bet he didn't read it or if he did doesn't care.

Anyway, you have all given me hope. I will have a chat with my physio about Occupational Therapy advice and pursue the Pain Clinic option once I have had my neck fully checked out.

Thanks and hugs to you all!

suzygirl

Have you considered changing gp? It is so important to have a good trelationship with your gp when you have a long term condition. I am fortunate that mine are brilliant, but I completelty sympathise with those who have a less than satisfactory service.

mates

Hi There,

Yes I have but I live in a small village so my options are limited. I do usually avoid this guy and ask for another GP but I needed an urgent appointment as I had had two nights out of three awake most of the night with the pain. I will avoid him in future however urgent the matter is though.

Thanks!

bubbadog

Hi There mates, I agree with what sticky & suzy both said about seeing an Ocupational Therapist and changing doctor. If you have more than one G.P in your pactice you have the right to see which ever one you want. Try having a chat with one of the other G.P's and see if they are more helpful. And definatly get in touch with DIAL or social services about arranging to see an O.T. I hope you eventually get some pain management and adaptions to make life helpful for yourself. You don't deserve to suffer as long as you have.

hileena111

Hi
I'm sorry to hear you are in such pain.
As for Occupational Therapists.....they can be a godsend. Mine are attached to the physio dept in the local hospital.
Ask to be changed to a different doctor in the practice and see if that makes a difference
Apart from that....not much help...sorry..I have OA in hips, lower spine, {ever so slightly in my neck} and my ankle.
I had acupuncture on my back for a while and it worked. Not for the full week in between sessions but for about 5 days out of 7 {this was on the NHS} I went 6 times, then had to have a break {I was told} then had another 6 and at the end of those was told that it he couldnt justify {to the NHS} keeping on doing it as it wasnt doing me enough good.
Sending (((((())))))

Love
Hileena

nancyt989

Mates, your story sadly is an all too familiar one. If it makes you feel any better, there are lots of people out there suffering with undiagnosed pain. GP’s don’t always seem to understand how debilitating and frustrating pain is to an individual. I agree with some of the other replies you have had, GP’s are generalists, and often only consider conventional medicine as a treatment option. In my experience, carry on with your appointments with the NHS, but also start doing LOTS of your own research. Since you have posted on this site, it looks like this is what you are starting to do now anyway. You are the one living with the pain, so you need to start trying to self manage in some way. I have always found a visit to the chiropractor very worthwhile. Chiropractors, unlike osteopaths, are professionally trained and look at a problem holistically. They will review your weight, your lifestyle, your diet etc and can often set you on the right road. Simple steps like reviewing what you eat, losing a bit of weight and trying to move more, often all help. Don’t get me wrong I am not against conventional medicine, I just think it is worth exploring other options too e.g. acupuncture. Unfortunately in the UK we are stuck with a postcode lottery regarding our healthcare, so sometimes you just have to do the legwork yourself. There are special pain clinics which you could get referred to, but you have to ask, ask and ask again, Don’t get pushed to the side, “he who shouts loudest” and all that. You should try and get your local health and social care team involved, (via your GP) they may be able to offer some equipment and advice, but keep an open mind as very often the occupational therapists can be a bit flakey., same for NHS physios too, I have found. Budgets are already tight and being cut further, so there is less help, support and equipment to go round. If you don’t ask you won’t get. Just keep on asking and you may get somewhere. I wish you luck on your journey to a more pain free life

NancyT
http://relievingjointpain.com