From one joint to another when does it end
Posted , 12 users are following.
Hi all
Well l have been a member of this forum for nearly 2 years. I first joined when l found out l had. Ostioarthritis in both hips. I had no idea l was 42 at the time and it started with a pain in my left groin. I worked full time and was fairly active. I suffered the pain for almost a year visiting gp twice to be told its most likely a pulled muscle and given painkillers nope it never went away agai visit to gp as it was getting harder to move about and get dressed. Again another gp told me its a pulled tendon few months later l was in tears just trying to get my jeans on and l though no more. Went back and demanded they do xrays. A week later l was told l needed both hips replaced due to OA. Got first 1 done in dec 2015 and yes it was hard but l mamaged 4 to 6 weeks later l was great walking with no sticks driving again l was desperate to get other side done just so all the OA pain was gone. I had my 2nd in feb 2016 again an even easier recovery it seemed much easier tgan 1st and though brilliant that is me fixed. But not so long after it my left knee started getting really bad pain. At first l though it must be coming from my hip replacement but it got worse so l went back to see my surgeon who did more xrays and found out l had it in both knee's to. By this time OA took over my life l just seemed to be in constant pain. I had to go part time at work and my concentration levels were gone as all l could focus on was pain. I could not sleep in my bed a full night l was up and down and the couch became comfier for me to sleep. I had my lert knee replaced in august. This op was so much harder than my hips and much more painful. My surgeon did warn me that the knee replacement was not as good as hip and that l would always feel l had a metal knee. So true. I decided then l needed a break from surgery as l went through so much. Days of depression pain sleepless nights. I went back to work after being of a year and though l will suffer the other knee for as long as l can. I just needed some normalitly back and l finally started getting my confidence back when l got it in my left ankle and this time l could not suffer it. I can hardly walk the oain is awful l can't put much weight on it. I was at the doctors today and told l needed my ankle fused asap as l had it severe and the pain would get to much for me. Which it already has. I have an appointment to see the surgeon next week with hope to get the op done soon. Bearing in mind l still need my right knee done.
Where does it end? Thats nearly every joint in my lower half that has OA. I am so tired of being in pain and relying on painkillers to be able to move. I would say l am parcially disabled in my lower half now as l can't walk more than 20m. My life has been turned upsidedown. I can't do normal things l used to or go holidays. I spend a lot of time sleeping and when its my 3 working days it kills me now l can barely make it through a day and cone home and sleep. Somedays l am in so much pain at work l become withdrawen and hardky speak. I know l will be in surgery again in the next month for my ankle. Thankfully l am lucky enough to have private medical insurance as a benifit from work or god knows how long l would be waiting for.
But what l will say to everyone getting hip replacements go for it. They are the best things l have had done. I can't even feel that they have been done now and l would get a hip replacement in a minute instead of a knee or the ankle which l have not yet had done but have read about it.
I just wonder when it will end for me as it seems never just now. OA is my life now and its hard to live with and my husband must be so fed up at how much our life has changed. I know l am so he must be as he basicallly has to do everything for me.
Anyway thats my story so far.
When does this end......
Laura
4 likes, 56 replies
beth2509 lors23
Posted
Hi Laura
?I know just how you feel. I decided it was timew to think hip replacement last April. May, my ankle started hurting real bad, just gout like the last few times. Yeah, only not gout. I was walking around on a broken ankle for a month! So put in cast for six weeks. Four weeks into that I stand up and searing pain goes through my left hip (the one I had decided to have done - the other hadn't ever hurt although the OA is bad I'm told). Rushed into hospital in an ambulance. Wonderful, my hip is dead (osteonecrosis) and crumbling and needs immediate replacement but can't be done yet because I have a broken ankle and that needs to be fully healed first. Three months later - 8th November 2016 - hip is replaced. Great. Not a scrap of pain. Going great, but then it just shows that the ankle is a lot worse than anyone thought.
?Next consultant in line is for the ankle. Knew there was some arthritis there (in the mists of time this was the first OA diagnosed), but now the tendon is broken and the bones out of shape - full ankle surgery like you but... they don't want to do it until the bone in the hip has fully remodelled, so possibly 6 - 9 months? So like you I still can't walk.
?Saw doctor yesterday about those odd feelings in my hands - need nerve function tests but definitely trapped nerves somewhere in both arms due to being on crutches for so long! Happened to mention that the muscles in my right thigh appear to be a bit sore due to the ankle, and he said "Probably not, it'll be the OA". I said, "No, it'll be the ankle". He said "Nope, it'll be the hip". F>>k !!!
?And that's leaving out the bacterial infaction in my tooth they are fighting to stop it getting into my bloodstream and the spinal stenosis.
?Four - five years ago I was doing Judo five days a week, hiking the Great Wall, climbing up the Himalayas. Now I need a mobiluty scooter to walk my dog in the park!
?Fed up. You bet I am. But here's the thing. It defeats you or you defeat it. The former isn't an option. So you need a battle plan for the latter. I started with aids - your husband might be fed up (I doubt it though - he's probably grateful that it isn't something worse and he still has you) but I am on my own, so I have had to adapt my house and my way of life to be able to manage everything. After that is was essentials. Holidays! How do you go on holiday like this - well it's amazing but there are ways and merans of still having adventures. I'll be cruising up and down the Scandinavian coast for my 60th in September (it was supposed to be hiking Central America, but that will have to wait a time). And so on, and so on...
?Yes I have days when I feel down. It doesn't usually last long because I don't have the personality for depression. A couple of hours, a glass of whisky, and it's back to planning defeating my issues. None of this defines us. It isn't who we are. And there are lots of people far worse off.
?One thing I recommend - if you can't walk far and it hurts, do like I have. Get a mobility scooter. Getting out, meeting people, and whixxing around the park with my border collie, really brings you out of yourself. Especially on a sunny day (and we are starting to get a few of them).
?Now my ankle started hurting again in the bone today. I'm hoping it isn't another stress fracture (that was what broke it last time - stress from the damaged tendon and the bone shifting)... Where did I put that whisky... and chocolate!
AnnieK beth2509
Posted
Wow, Beth, you have been through so much! With still a long way to go. I love your positive attitude and finding ways to give yourself good experiences while you are so disabled, hopefully temporarily. I can relate to missing former experiences, as my husband and I were avid backpackers. Even as my hip got bad in years past (before I knew that I had OA), we found ways to compensate. We went on easier hikes in different places, and he carried my pack sometimes. On our last trip, a year before my THR, I only carried a daypack, and we basecamped and did dayhikes from there. Sometimes I'd stay near camp all day and on the beach nearby while he took a day long hike around the island. There is almost always a way to get out and about.
Wishing the best for you in your journey back to full health. And I'm thrilled you will be going on that cruise and that you get to "scooter" your dog to the park in the meantime! Joining you as I indulge in chocolate!
RichardKen beth2509
Posted
Oh heavens, I’m in a similar camp but how frustrating for you. Wonderful to have a dog for company especially a border collie. I have gad several for sheep walk and it is such fun training them als a great conversation starter when out and about. The number of young ladies and older ladies too who would come over to talk was smashing <VBG>
I'm just about to open a very exciting present to myself that's just arrived. It is a very high quality pair of image stabalised binoculars that I've always wanted and should give me hours of pleasure and help me to get out walking once I've had my two surgeries Gi
RichardKen
Posted
Cheers Richard
judith12644 beth2509
Posted
AnnieK RichardKen
Posted
Richard, what a great present for yourself! I might just indulge in the same soon. I've never had a good pair of binocs, and I do love to birdwatch.
RichardKen AnnieK
Posted
It was dark when I opened the box so hopefully tomorrow will dawn bright and clear and I can see for myself how good they are!
Cheers Richard
AnnieK RichardKen
Posted
Thanks for the recommendation! I'll check it out, but I'd probably have to get something lighter, and sacrifice some quality. I had a compression fracture in a vertebra last summer, in between my two hip surgeries, and it was the most painful, debilitating thing I've ever been through. Consequently, my back is iffy, and I don't want to stress it too hard.
Do let me know how much you are enjoying it, once you take some looks. 👀
lyn1951 beth2509
Posted
Beth - you just picked me up from a pity party, I have been having problems coping with all that has been thrown at me recently as well, but after reading about you experiences, puts it all in perspective doesn't it.
Ultra sound has diagnosed torn tendons and muscles in shoulder, how I havn't got a clue, but that shoulder has been sore for some time and as usual everything else has got in the road so I have been ignoring the problem, probably arthirits in another joint, surprise surprise, but Dr hasn;'t x-rayed yet to see for sure, but as we arthuruts patients know the feeling and its awfully famililair.
Best wishes and happy cruising.
We are off to NZ from Aust, for a week to see family and friends, probably for last time for husband, his heart failure is not getting any better I'm afraid, broken ankle and heel regardless.
Adult son is going with us, to support me and be there if I need him to help lift and carry.
lors23 AnnieK
Posted
I wish l has some of your positivity right now all l am facing is more surgery as l can't walk and all l can think about is pain and more surgery. Perhaps in a years time things will look better for me and l will be able to go on a much needed holiday where me and my husband used to love going walks along the seafront in nice warm weather. Well done to you and richard for being so posative.. we have also thought about getting a dog but now is not the right time plus we have a cat that would need to get on with a dog to.
Stay strong
Laura
AnnieK lors23
Posted
Laura, I get it. You are SO debilitated now that it is very difficult to have a good attitude. From my THR in July 2015 to now, I have been unable to go on a vacation. My husband has only a few weeks off per year, and last summer he spent it taking care of me during the worst of my vertebra fracture and the kyphoplasty repair. I was in so much pain, could hardly move for a month, had to sleep sitting up in a chair and hunched on pillows over a table since I couldn't lie down. I didn't sleep much, as you can imagine. I could hardly even handle typing on a computer keyboard for a long time, because I needed one hand to support myself, since my back couldn't support me alone. And I couldn't recline or lie down. There was no question of being able to go anywhere, and I sure wasn't very positive back then! We MIGHT get to go somewhere on vacation this summer.
Meantime, I go on short outings with my sister to restaurants and a few stores. And I am doing things in my house that I've always wanted to get done, like revamping my filing system and going through and organizing thousands of old photos. I couldn't do any of this if I couldn't walk.
And I think you are right not to get a dog right now. They require lots of attention and care and walking. I've done a little dog sitting lately for a friend, and it is stressful even with a very small dog, and even with me doing as well as I am. We can't even consider having a dog until, maybe, when my husband retires.
I can't even imagine not being able to walk, like you, Laura. I am certainly hoping you get to walk along the sea shore again soon!
renee01952 lyn1951
Posted
have a wonderful trip, sweetheart - I am so sorry to hear about your husband not doing that well -
Enjoy and embrace each and every moment ....
big warm hug
renee
kdm beth2509
Posted
Beth you rock! So want to walk Hadrians Wall but if that fails it's the fjords and a border collie for me too. Imagine the terror that two mobility scooters could cause in a suburban park 😎😎😎
beth2509 kdm
Posted
These things are only delayed, not cancelled. Have a look at hurtigruten - their ships are working ships and small so can get in and out of fjords big cruisers can't. So if it comes to the worst, you don't even have to leave the deck to get great photographs! Also worth noting you can get to them by ferry from the UK (flight ban dealt with there!) And mobility scooters are always transported free by all public transport carriers - rail, ferry and plane - because that is international law!
But I'm afraid you are too late on the terror that is two mobility scooters - we have three in our park walking dogs already!!!
Fernlady lors23
Posted
Hi Laura, long time no speak. So sorry to hear you are still suffering on top of everything else that's happened over the last few years. Sending big warm hugs your way xxx
lors23 Fernlady
Posted
Hey you
Long time no speak. Yeah unfortunatly things have jusr went from bad to worse in my body it is going from one joint to the next. I could just about cope when l had everything done except my left knee. I knew it needed done at some point but the pain was not that bad so l decided to try get some normality back in my life. I started working again but changed my hours to part time only working 3 days a week. It was such a hard.step going back after having a year off and for the best part of the 3 months before it l has spent it with my mum going through cancer treatment. It made me forget all my issues and l went into auto pilot running in and out of hospital with her and attending every appointment she had it pretty much was the hardest time of my life then my husband fell ill and ended up in hospital to. That really hit me hard as he was my rock. I realised just how precious he was to me and between him and my mum l still have no idea how l coped. They spent what seemed like an eternity tyring to find out what was wrong with him as it affected his brain and he had no idea what was happening. It was like he had brain damage. He was not sure where he was or what was going on. It turned out be a brain virus l can't spell what it was something like ensephalitis. They treatated him with every antibiotic until one worked and he came back to me. Meanwhile my mum was in amother hospital just finished her intence chemo and radiotherapy. So that all ended my husband got back to full health. Thank god aa l could not live without him he is my best friend and my soul mate. Mum eventually after weeks of being ill after her treatment was given the all clear. But the person who came back was not my mum she was frail and very forgetful and even after months all she has done is get depressed and won't go out the house and is so wrapped uo in being ill its like she still wants to be ill instead of celibrating beating it. Now l have had time to see that l am in so much pain. In my ankle l knew l had something wrong. And now l know l have to get this op and l am so scared my mum is now not there for me. She forgets my appointments and all l get is how fed up she is sitting at home. I have to reminnd her whats happening and she jusr is not there. I know she has been through a lot but me and my husband was with her every step of the way. Now i feel alone. I have my husband who l feel now is getting so tired of how much my illness has destroyed our normal life. I feel l hold him back now so l am trying to deal with it in my own as much as l can. But its so lonely and hard. And l am getting so low. Anyway fern sorry for giving you my full story. It helps to say it out how l feel and l am sure in a years time things will get better.
Hope your doing ok yourself hun and its nice to hear from you.
Take care
X
Fernlady lors23
Posted
Oh Laura, things surely can't get any worse. If you lived closer I'd come & give you a personal hug. I remember everything you went through with your husband & your mum. Maybe she has lost all her confidence & can't help worrying that it's going to come back. By staying indoors & not going out you sort of cocoon yourself from the rest of the world (this happened to my Nanna).
You really are going to be bionic by the time they've finished with you. Have you not got a drug combo that works for the pain?
I'm doing great apart from a few twinges in my other hip now (the surgeon did say it would need doing at some point) but not bad enough yet to start taking drugs!
Big hugs to you xxx
lors23 Fernlady
Posted
Yeah l am on 2 diffrent types of painkillers co cosamol and shotec 10mg but l also have longtec 10mg and 20mg for when pain is unbearable. But right now hun the pain in my ankle is so bad that the painkillers are not really working. Hence the reason l am jumping into surgery as soon as possible as its so bad its all l can focus on. Hospital on wednesday and hopefully l will be given a date then or a rough estimate of when and what he is gonna do.
So glad you are ok fren and don't need to rush to get other hip done.
Laura
X
renee01952 lors23
Posted
dear Laura,
Good Lord - I don't know what to say - that is tough, sweetheart, really tough ... I am so sorry ...
Please do not blame your self for things that have happened - You are also assuming that your husband is turning away from you - talk about it with him ... he might just feel helpless and doesn't know how he can help you - he is still your rock ,,, let hin know, okay
Your mother has also gone through a life changing experience and who knows what the treatment has done to her and her brains ... has she been tested - memory test or something ?
Please don't take it personally - none of it okay ?
You are not alone, but oh... I do know that feeling -
i keep you and your loved ones in my healing circle ...
big warm hug
renee
renee01952
Posted
you are the most important person here -
in loving embrace
renee
RichardKen lors23
Posted
I'm so very sorry to hear what a tough time you have been having. You must be one very tough lady to have coped but it sounds as if you really need a break to get some strength back!
Very best wishes Richard