Never-ending pain

cox1058

Does anyone feel like they just can't go on because of the pain? I really feel like I am just existing now as the pain is really getting to me. I was referred to a Pain Management Clinic who in no uncertain terms have said there is nothing else I can have medication-wise. It doesn't help as I have anxiety issues that I've had for circa 32 years, so whereas some people would be asking for an operation, I'm completely the opposite as the thought just freaks me out. I have widespread issues with my back, hips, knees, left shoulder and arm and the only time I am pain-free is when I am asleep. The Pain Clinic seem to think that the key to being pain free is to have a telephone rehabilitation course discussing how my new mobility scooter will help me get out more and therefore I will feel better. They also sent a report to my GP asking them to consider whether this could be fibromyalgia as my daughter was diagnosed with it some years ago, but I've heard nothing from the doctors. I'm on 70mg Amitriptyline daily which does help me sleep but does nothing for the pain and gives me a whole load of side effects like dry mouth, sour taste in my mouth, constipation, heartburn etc. I take 2 x co-codamol when I've had enough, but they barely touch the pain. I'm not sure how much more of this I can take…

frogmorton

Morning @cox1058

That doesn't sound like the most helpful appointment with the pain clinic. Mind you I expect it can be hit and miss I mean some Drs are good some are rubbish.

I remember your story I think quite well and felt so much for you. I think it very unlikely that your GP will contact you to discuss the possibility of you having fibromyalgia it seems it's up to us to do all the following up these days. If you have a copy letter which they sent to the GP I would make an appointment with the GP and ask them about it.

Hopefully then you can try the treatment for fibromyalgia.

Is your daughter being successfully treated for hers?

I was just messaging someone else this morning @painx100 and felt so much for them and you. Have you ever tried ringing the helpline? They did help me a lot I think more by listening than anything else.

I didn't help @painx100 much either just wanted you both to know that someone cares and understands

((()))

Toni x

Anna

Hello @cox1058 ,

If you would like to chat to someone, then as @frogmorton says, you could try ringing the Versus Arthritis Helpline. It’s staffed by experienced people who will listen to you and offer some helpful advice about what you could do next as well as give you emotional support. Here are their contact details. They’re open from 9am till 6pm each weekday:

https://versusarthritis.org/get-help/helpline/

Lots of our members have found the helpline service really supportive, and I’m sure you will too.

Anna ( Moderator)

Baloo

@cox1058

just thinking of times in my life when I kind of wished pain would go away. Once I had a toothache from the pit, and it wouldn't go until it was treated. Another time I had my first migraine and honestly though I was going to die. These were severe pains. Arhritis I don't find so bad, but definitely gets in the way.

Usually I end up wanting to figure it out, and end up finding out as much as I can about whats going on, and then off to someone to consult with about it.

@frogmorton comment resonates. For a long time I have not been around groups of people much, but when I talk to them its surprising sometimes how much they seem to know. Wisdom possibly garnered from others. I went out to the cafe and said fry up please. Im diabetic and want to start a new diet. You won't want sugar in your coffee then he replies. Sometimes people just know.

cox1058

@frogmorton Thank you for taking the time to reply. I have the first telephone rehab call booked for November - I really don't understand how it will help, but I'm going to give it a go so they can see I'm trying to accept any help offered. I think my worst fear is just that I am losing my independence and scared in reality. The pain clinic said they will discuss how my mobility scooter will help - I think I know that already as just bought it without any suggestions from anyone - I know my mental health is suffering as I no longer get out…it's not rocket science. Now I have it, it comes with more fears as they don't feel overly stable, so it just adds to my anxiety in thinking it may tip over! I also feel such a burden to my hubby - he either has to try and get the scooter up ramps into his van so we can go further afield, or lift the so-called heavy portable one into the boot of our car. Either way, I am just adding to his chores more and more and I hate it. I really wish there was some medication I could have to just let me have a few hours minimal pain, particularly at weekends when hubby wants to go out. I've seen on my doctors notes that the pain management have sent them a copy of the report asking for me to be considered for fibromyalgia - that was sent about 5 weeks ago and I've heard nothing from the doctors. I do know because of my daughters issues, that nothing medication-wise really helps her either, so apart from having another diagnosis, there's not any medication which will alleviate the pain and symptoms. As far as I'm aware, it's just another label for all the problems I may be having, but even if they diagnose me with it, I can't see anything changing in terms of the pain.

cox1058

@Baloo I've never felt as miserable as I do now, and can't imagine this going on for years. I really do feel that all I do now is exist from one day to the other. There is nothing to look forward to. During the working week I am sat in front of a laptop for 10 hours a day and on my days off I am just flitting from one chore to another because I have to sit down in between everything. Hoover one room, sit down. Wash up, sit down etc. I can't do much in my garden now as even weeding means I can't get on my knees like I used to so I have to use a hoe and some long tweezer things and it takes an absolute age. I used to walk 8 miles daily with my dogs - now they play in our field which I know we are lucky to have, but I would much rather be able to get them out, as well as myself. From the moment I wake up and struggle to get out of bed, that's it…pain all day. I just want to get back to bed to sleep as its the only time I am pain-free. I know we should feel grateful to reach an age, but I don't feel like I am privileged to be getting older if it comes with a price of constant pain and feeling like you are losing your independence. I just feel so miserable and like there is nothing to look forward to anymore.

Baloo

@cox1058 sounds familiar.

I was about to say a lot of us have been there, found out how hard it is to come back, and probably going there again some day too. Perhaps with not as much pain perhaps with more pain.

Meanwhile I am at work and decided to respond. I notice you still get about. I long ago decided these little chores are a bit more than just chores, they are also, what might be, the only beneficial exercise I can get. I put the effort into increasing how often I have to get up and move about. Wash up, sit down. Clean the sink, sit down, Check the fridge door, sit down. Check the fridge shelves, sit down. I found its pretty easy at home to formulate a way of doing that, not so easy to do it while travelling though as the physical demands are so much larger. Catch the tram, sit down. Order a taxi, sit down. I hope this helps a bit.

Babbie

I’ve just read the above messages and had to smile, it was looking at a mirror image of me, used to hill walk, Lake District favourite, yesterday my husband took me and my dog to a country park, he walked me to the coffee shop got my coffee and him and dog went for proper walk as I’m on crutches following a knee replacement the lad in cafe brought me another coffee. The change of scenery bucked me up, I’m struggling with the exercises from physio barely put any weight on knee first thing, is this normal? The first knee replacement went like a dream up back to work and driving, I’ve now retired, gave up driving. Life feels as it is pretty finished.