Osteoarthritis

hullmags

Where to start, I suffer from Osteoarthritis which has hit me over the last few years. I am onto my 9th operation next week in the last 2&half years! This time I'm having my big toe amputated due to me falling down stairs and snapping the plate I had put in last year. To be honest I'm worried for the first time about having a operation and like I said I've had a few.
This year just keeps getting worse!! They've just found out my tib&fib have fused together on my left leg, so my leg is 5cm shorter!!
I've been under pain management. Which was great to start with, but one of doctors I saw was quite rude as said "it's not like you've got Cancer"!!!!! She blow me away when she said that ( no disrespect to anybody with cancer).
The fact that I'm only 48 and had to give up working 20months ago still effects me. I try taking to my wife but she doesn't understand and keeps asking when I think l'll be working again? for which just frustrates me more.
I know I need my other knee replacing and my right hip and my left shoulder done as well falls on deaf ears!! I would love to not have OS and be working again, but in the end I have. One day I hope can play football with my twin sons.

dreamdaisy

Hello, I have two kinds of arthritis and OA is one of them. It affects my ankles, knees, hips and other bits too. I have only had synovectomies to date and was refused new knees three years ago because I was too young (aged 52). Three years on my ankles and both hips are shot to bits as a result of the delay. Hey-ho, it's a case of mind over matter; I do mind but that doesn't matter.

I suspect the initial difficulty you are going to face is learning to walk without a big toe. I have a very basic knowledge of anatomy but I do recall reading somewhere that the big toe is crucial to the process of walking. New joints can last for years as long as the owner respects them - I can understand your wish to play football with your lads but I don't know if that is a realistic aim. I suspect your wife is struggling to deal with this too - arthritis not only affects us, it affects those around us. I have been dealing with it for some time now and my husband is still surprised that I am in pain 24/7 - he is one of the lucky ones who, when ill, takes meds and gets better. I take many meds but will never get better, it is a strange concept.

There are two articles on the interweb, one is called The Spoon Theory and the other There's a Gorilla in my House. It may be worth your printing them and giving them to your family and friends to read - they explain in a very clear way what we are up against when dealing with a long-term health condition. Arthritis lacks 'glamour' because it is so common and this can go against us; people think they know what it is but they don't have a clue. Good luck with your operation, please let us know how it goes, yes? I wish you well. DD

marrianne

Hi Hullmags ,Hope you keep us posted and we can give you support and appreciate how you are feeling ,family are what we really need but unfortunately they are to close to the situation and dont always help I have osteo/ra . had a 3 operations and due another tkr trying to delay as long as possible ,good luck with your operation like DD says being realistic is important as well as being determined I am sure you will do well Hugs Marrianne x

stickywicket

Hello hullmags and welcome from me too.

Nine operations in two and a half years Blimey! Were they all for your OA? If so, you seem to have been singularly unfortunate. I've had RA for over 50 years and OA for all but about 10-12 years of that and still only had knees and hips replaced though I have it in most joints. However, if the plate has snapped I guess it can't just be left. I hope the op. and recovery aren't as bad as you fear.

On a slightly more positive note, I'm not sure it matters too much that one leg is shorter than the other. I've been doing it for years. When you have both knees and hips replaced it's hard to get them to match up exactly, especially when you factor in the OA in the ankles. I limp but that's about it. I exercise daily to keep everything in as good nick as possible, including core muscles.

Dealing with daily, unrelenting pain is difficult. There is no quick fix with arthritis. Indeed, there's no slow fix either :roll: so we just have to use all methods at our disposal that help. I'm sorry you had a bad experience at the Pain Clinic but I guess that was just one doc who was may be having a bad day herself. Don't let it put you off.

Arthritis of any kind affects everyone in a family in many ways. Pain is quite isolating. We can't be bleating on about it all the time yet it's a fact of our lives. I've always tried hard to ensure my pain impacts on my family as little as possible while not shutting them out of the reality of my life. It's a tricky balancing act.

Because I was unable to work my two sons grew up without a lot of the holidays, outings and toys that their friends had. It worried me at the time but I don't think it's made any long-term difference. They are both kind, helpful adults who assume everyone should be included in all things and try to make that happen. I did always play footie and cricket with them in the garden but my standards were abysmally low as I could never run or tackle. But we had fun together. That's the main thing.

dachshund

Hello Hullmags
i wish you all the best for your op i'm sure it will go well.
i was born with one leg shorter so it's normal to me i have oa and op.
take care
joan xx

villier

Hi hullmags

Welcome to the forum, sorry to hear about your accident resulting In having to get your toe amputated.

Goodness me, nine ops in just over two years I thought I was bad with just two in a year and a half :shock: . We all understand what you are going through and are here to support one another. Give us a shout for your operation and if pocket duties are required.

Good luck hope to see you around ....................Marie x

hullmags

Hi everyone I would like to say a big thank you for all your
Comments they are greatfully received.
I love to further with my story.
I'm from Newcastle and my old friends used to call BFG (big friendly Geordie) as I'm 6'7" tall!
I used to work on the railway up in Blyth
Northumberland and one day going to work on my motorbike, I had a really bad crash and dislocated my left hip, broke my left tib and was put on traction and after five weeks they found out that I'd broken a bone in my left hand!! 6 months past and I returned to work, I thought that would be that for long time but I was wrong
.after living from Devon to Nottingham I've ended up in Hull. In 2000 my OA started and I needed my first op on my left knee. After my wife had twin sons 2001 through
IVF I then live was perfect but again OA come back, in
2010. The OA took over my life, it's in nearly every part of my body. Like I said in my other post since 2011 I've ops on most of my joints including right had twice, right shoulder once, left shoulder twice. Left knee twice, right knee once, right ankle twice and next week will be my third!! But it's not all about OA. I was in hospital last year for five days with infection in my left leg and I've got problems with my right kidney now as well as I got rushed into hospital in February and the Doctor at A&E thought that I had Kidney stones as I was so much pain. But I eventually saw a specialist at hospital last week and said that he didn't think it was kidney stones, but was sending me for a CT scan anyway. But he wouldn't tell me what he thought it was??!! So back OA and the drugs I'm taking co-drydmol,tramadol, pregabalin, fentanyl patches, I've just stopped taking celebrex for my kidney, amitriptyline to help me sleep!!! Also have morphine sulphate in a bottle for when I have a bad day!!! I also take drugs for hay fever. The truth is I have tried to cut down my tramadol to 6 a day. I have two orthopedic specialists one in NHS hospital who looks after my hands and shoulders and neck and another who looks after my lower half, but he works from a private hospital in Hull on the NHS.. But my OA affects me mentally as well, it has hit me hard since I had to give up working, as I only have
Wife and my children. As I said in my other post my wife doesn't understand what I'm going through, she's only been with once to see any of my specialists. I just don't understand why she doesn't want to go, the only thing I can think is that she doesn't think it's that important? Or she doesn't want to believe it? Anyway we seem to have separate lives now as I send most of day in our bedroom as she only likes her own programmes!! Which I'm not interested in. And due to our financial circumstances we just don't do anything anymore. Our boys are now used to doing anything apart from playing football for a team in Hull boys Sunday league.infact they had a beach football tournament last Saturday in Bridlington. I took them as wife didn't want to go as she said "that it was going to rain, I don't want to go " I tried to no avail to get her to go. After I told my son's that I'm having my big toe amputated next week. One of them said that we should do something this weekend as I'm having my next op next week,but how do you tell 12year old we can't afford to do anything.
I've got as I have motobility car, which is a automatic and my wife can't drive. So god knows when I'll be able to drive again. I do have a wheelchair that is no good as it's the biggest prescription wheelchair they've had to make, but as I can't push it as I've OA in my hands and my wife is to small to push me or even see past my head. They wouldn't give me a electric chair as I can walk around my house with my sticks!! it cost £800, what a waste of money as I can't use it. While I'm going on a bit I've worked most of my life, but trying to get help when you have a mortgage is a joke!! They take £31 a week out of my support allowance to pay my mortgage and I've got to pay the rest. When you have people who haven't worked a day in there live and get there rent paid is a joke??!! And as for ATOS I think they think that we all pulling there legs.I don't want simphy, I want people understand it can be hard having OA. It's not all about the pain it's a total change of life financially,physicaly and.mentally. I would think my case is one worse cases. Mind one funny think happened when I had a full knee replacement a couple of years ago when they give me a mp3 player to listen to while they did the operation, all the music was really old. I asked if they had any 80s music on this mp3, but my surgeon said that most people were older than me, they only had music from the 40s/50s!!! I've got no luck! Thanks again for your comments hullmags xx

barbara12

Hello hullmags and a warm welcome from me..
I am so sorry to see how you are suffering and can only imagine the pain from not being able to work and give your family the things they need,but yes there is one,you now have us lot to talk too, and I think you really needed to get all that out, it is so good to talk about things, like you I have OA in most joints but I am much older at 64..so I count myself one of the lucky ones,I can see how much you need that scooter, you must keep on at them, they do have emergency funds but you will have to make sure you keep asking...and I am sure your kids love you come what may... I hope you stay with us and then you can get some support ...

marrianne

Its complex its complicated only you know how it feels, You worked hard to give them everything oh goodness you can still do everything with your kids give them a good life ethic ,you do deserve so much more .......guess she could be cross at the moment her big strong support now needs help ..Marrianne xx

stickywicket

Arthritis affects entire families not just the person diagnosed. Have you tried a good, long, honest talk with your wife, maybe over a nice meal? It's all too easy for both partners to retreat into their own worlds. Talking things over calmly and matter-of-factly, with both parties talking and listening can help a lot. Sometimes our spouses feel they can't voice their own unhappiness because our pain is so obvious. Arthritis does find the cracks in relationships and we have to work extra hard to maintain them. However, the work is very worthwhile.