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Hello - OA hips, spine, finger, feet

PemburySingerPemburySinger Posts: 6
edited 5. Apr 2017, 10:01 in Say Hello Archive
Hi there,

I've just joined this forum, having spoken with one of the wonderful people on the support line. I was feeling both depressed and distressed, because of my condition, and because I am expecting to have a hip replacement that has been delayed, and also due to fear of the future. I am also recovering from illness.

My story begins about 10 years ago, when I had sciatic pain and was treated with epidural steroid injections in my lower back. The doctor used ultrasound to guide the needles, and afterwards reported that he could see some arthritis, but that I wouldn't need to worry about it for quite a lot of years. I was 48 at the time. The sciatic pain turned out to be due to a prolapsed disc, and after almost 3 years of agony, I had the prolapse dealt with surgically.

About 5 years ago, I noticed that I experienced pain when rotating my left leg outwards to the side - I thought this was again due to my back, and though nothing much of it for about 3 years, but the problem increased. I became unable to sit comfortably on the floor, ground, or even to sit up in bed. I still thought my spine was at fault. In February 2016, my husband and I went on a short trip to Scotland, and walking around was painful for what I thought was my back, and also for my feet. During our summer holiday last year, my left leg kept on collapsing under me, and I was experiencing pain. My feet also hurt.

I developed a clicky small middle finger joint, and my GP referred me to a hand and wrist specialist, who diagnosed arthritis, but said that those joints are not replaced in the UK - one would have to go to Japan or South Korea to have that done, but it wasn't bad enough to warrant it just yet, and by the time it is, then maybe such a joint would be available here.

I was referred back to the spinal surgeon because of the pain I was experiencing. My MRI scan showed OA at the L4 and L5 vertibrae, with a misalignment, and a slight stenosis of the left foramen. There is nothing to be done now, but one of the vertibrae could be surgically evened up in later years to realign it. He could not see anything that explained the degree of pain that I was experiencing.

Then I demonstrated the outward rotational problem I have. He suggested that it could be my hip that was the problem. Following this, my GP sent me for a pelvic x-ray, which confirmed this suspicion, showing advanced OA of the left hip, and OA in the right hip as well. Things moved fast then, and I was referred to a specialist at the Horder Centre in Crowborough, East Sussex. He said I must have a full left hip replacement, and I was put on the waiting list.

In amongst all of this, I detected OA in some toes in my right foot, although they don't hurt as yet, my right big toe joint hurts, as that toe is precessing again (successful surgery 15 years ago to correct a bunion) and needs surgery, and in February I detected OA in my left big toe joint, which does hurt. On movement, my lumbar spine often clicks and grinds, and so does my right hip. At times it feels like my whole body is affected in some odd overall way that I can't really explain.

I had a date of 18th March, a Saturday, for my op, and went in, but it turned out a) I was right at the end of the operating list for the day, b) they were short staffed due to sickness and had some agency staff, c) they have fewer staff on duty on a Saturday, and d) they were not willing to take the risk of doing surgery on me, because I have asthma and bronchiectasis, under those circumstances. They had my interests at heart, I guess, but it was a blow.

I very quickly had another date, last Thursday, 30th March, but I woke up last Monday feeling very unwell. I had had a chest infection in January and February, and it had returned with full force. The next date I was given for surgery is 25th May, and I was devastated at the time. This is the next available date with that surgeon. I have since been put on the list of another surgeon as well, and feel very, very lucky. His date is 2nd May. All provisional, of course.

So, now I am being ultra careful, my GP has told me to continue antibiotics for another week, I didn't go out and enjoy myself with my friends playing music last night, which grieved me, and I won't be going out any other evenings this week either. Just to get myself well for surgery. The hope is that I can get an earlier cancellation with either surgeon.

Does this make me happy? No. That's why I'm posting here, and I'm sorry it's such a long first post. I fear for the future. :(

Thank you for reading.

Comments

  • moderatormoderator Posts: 4,091 mod
    edited 30. Nov -1, 00:00
    Hello

    Welcome to the forum, I am sure you will find support, advice friendship and light relief here. There are lots of others with OA and several are waiting for or have had hip replacement surgery.

    I am one of the moderation team, we all have one or more arthritis "hangers on" or look after family with the same.

    If you need help with thr technicalities of the forum - just get in touch via a personal message.

    Best wishes and good luck with your surgery

    ChrisK
  • stickywicketstickywicket Posts: 25,887
    edited 30. Nov -1, 00:00
    Hello and welcome from me too. Arthritis is a nasty, unsociable disease which takes us well out of our comfort zone and into places we'd rather not go. And once it settles in one joint it does often spread to others.

    I started with RA at 15. OA set in later as treatment for RA wasn't very good then. In my 56 years of arthritis I've has 2 new hips and 3 new knees. I think either your surgeon was wrong or you misunderstood. Finger joints are replaced in UK. I saw a surgeon about 30 years ago re replacing mine but we decided, as I had a reasonable grip, to leave well alone.

    It is disappointing when operations are cancelled but much better to be safe than sorry. Just keep exercising your joint to ensure a good outcome. I hope all goes as well for you as it has for me.

    The future can be good. Eat healthily, exercise, be very adaptable (Don't cling to old ways and habits) and enjoy life. I am doing. Right now I'm at my son's in California enjoying my grandson's baseball.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • PemburySingerPemburySinger Posts: 6
    edited 30. Nov -1, 00:00
    Thanks stickywicket. Sorry to learn that you are more or less a lifelong sufferer.

    The hand and wrist surgeon said that some finger joints can be replaced, but not the one that I have arthritis in, not yet at least. He said the only alternative at the moment is joint fusion at a slight angle, but that would make playing guitar awkward, especially with my short fingers. I have seen someone play guitar who has clearly had this done, and it looked difficult. At the moment my finger isn't bad enough to warrant having surgery, although there are times when it hurts.

    Having bronchiectasis is a bummer, because it means that chest infections are more likely with a cold and can take a long time to clear, always needing antibiotics, and strong ones at that. Having been fobbed off yesterday and told to keep on with plain Doxycycline, I am going back today to say I am feeling worse again, and I need something different and stronger.

    I would like to do more exercise, but can only do so when I get rid of this bug. I dare not use up the little energy I have walking around the block. Pottering around at home is about what I can manage, with remote working for my workplace. My musical activities outside of home are on hold until my health improves. I find this distressing as I miss playing music and singing with my friends. And of course, outside of my family, I miss the company of my colleagues and friends.

    Sent from my D5803 using Tapatalk
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I have psoriatic arthritis (PsA) and that has led in due course to OA and fibromyalgia. I began back in 1997 when I was 37 so I've a few years under my belt, some joints have the one, some the other and some both which can make things interesting. :| My affected joints include my toes, ankles, knees, hips, fingers, wrists, elbows and shoulders but thankfully not my spine or neck: the latter aches but that's due to tension caused by pain.

    Advances in surgery are being made all the time but that doesn't mean that surgeons are able to keep up with the progress. One would hope that they do but I suspect they are swamped with information (as are GPs). Over the years I have had to make adjustments to what I do and how I do it, including socialising. On the rare occasion I end up with more than two things happening in the same week one of them has to be kicked into touch because I know my limits. Mind you, it also provides the perfect excuse for things I want to avoid like the plague. :wink: I no longer accept invitations for events in the future such as weddings, christenings, Bank Holiday barbecues etc. because I have no idea how I'll be on the day. I count myself fortunate that my friends still invite me as I am usually a Daisy-no-show!

    The biggest adjustment we made was moving house - arthritis can be an expensive disease. I have not yet had joint replacements and probably won't bother, I prefer the devil I know and the fact that other joints will still be bothersome isn't an attractive prospect.

    I am asthmatic and was born with eczema so the PsA shouldn't have been a surprise but it was. Other members of my extended family have either asthma, eczema or psoriasis but I've done the job properly. Well done me! :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,887
    edited 30. Nov -1, 00:00
    I'm sorry to hear your guitar playing is being restricted. Arthritis does seem to find and explore the bits we love most. My piano playing was an early casualty though the neighbours might have regarded that as a bonus. I did, later, do a very interesting OU course on composition. Far less physically demanding.

    The bronchiectasis must be a pain in itself. I don't get that but being on immuno-suppresants for the RA means I have to attempt to avoid any infections as we succumb easily and hang on to them determinedly. I wm currently avoiding my grandson who has a cold as we fly home next week.

    if you go to the Managing Arthritis section above you'll find some exercises. I did these several times a day before all my knee and hip operations. They really do help the recovery.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • PemburySingerPemburySinger Posts: 6
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, it's nice to meet you but I am sorry you have had to find us. I have psoriatic arthritis (PsA) and that has led in due course to OA and fibromyalgia. I began back in 1997 when I was 37 so I've a few years under my belt, some joints have the one, some the other and some both which can make things interesting. :| My affected joints include my toes, ankles, knees, hips, fingers, wrists, elbows and shoulders but thankfully not my spine or neck: the latter aches but that's due to tension caused by pain.

    Advances in surgery are being made all the time but that doesn't mean that surgeons are able to keep up with the progress. One would hope that they do but I suspect they are swamped with information (as are GPs). Over the years I have had to make adjustments to what I do and how I do it, including socialising. On the rare occasion I end up with more than two things happening in the same week one of them has to be kicked into touch because I know my limits. Mind you, it also provides the perfect excuse for things I want to avoid like the plague. :wink: I no longer accept invitations for events in the future such as weddings, christenings, Bank Holiday barbecues etc. because I have no idea how I'll be on the day. I count myself fortunate that my friends still invite me as I am usually a Daisy-no-show!

    The biggest adjustment we made was moving house - arthritis can be an expensive disease. I have not yet had joint replacements and probably won't bother, I prefer the devil I know and the fact that other joints will still be bothersome isn't an attractive prospect.

    I am asthmatic and was born with eczema so the PsA shouldn't have been a surprise but it was. Other members of my extended family have either asthma, eczema or psoriasis but I've done the job properly. Well done me! [emoji38] DD
    Hi DD. My condition seems mild compared with yours, if no less distressing. But I am at an earlier stage of trying to cope with the emotional impact. I am a lifelong asthma sufferer, diagnosed at 10 months old, and started out with eczema, but never developed RA or PsA, so lucky on that score.

    My mother had both of her hips replaced in her 70s, so I do not understand why I am being affected 20 years earlier. I have just identified an osteophyte on my left thumb, and half jokingly said to my husband that my hands would end up looking like his mum's, all knobbly.

    I suppose I have to learn to accept my situation, but it's very hard at the moment.

    Sent from my D5803 using Tapatalk
  • PemburySingerPemburySinger Posts: 6
    edited 30. Nov -1, 00:00
    I'm sorry to hear your guitar playing is being restricted. Arthritis does seem to find and explore the bits we love most. My piano playing was an early casualty though the neighbours might have regarded that as a bonus. I did, later, do a very interesting OU course on composition. Far less physically demanding.

    The bronchiectasis must be a pain in itself. I don't get that but being on immuno-suppresants for the RA means I have to attempt to avoid any infections as we succumb easily and hang on to them determinedly. I wm currently avoiding my grandson who has a cold as we fly home next week.

    if you go to the Managing Arthritis section above you'll find some exercises. I did these several times a day before all my knee and hip operations. They really do help the recovery.
    Hi stickywicket. So far the guitar playing is minimally affected. If I had joint fusion, then it would be seriously affected. In fact, I should do more guitar playing for left hand strength and flexibility. I play concertina as well. I started two years ago, and it was a struggle in some ways at first, but is developing nicely now, and I greatly enjoy it. It's also good for keeping the fingers moving. Recently, the workshop group I go along to formed a band and played for a barn dance, which went really well.

    Sent from my D5803 using Tapatalk
  • PemburySingerPemburySinger Posts: 6
    edited 30. Nov -1, 00:00
    I'm sorry to hear your guitar playing is being restricted. Arthritis does seem to find and explore the bits we love most. My piano playing was an early casualty though the neighbours might have regarded that as a bonus. I did, later, do a very interesting OU course on composition. Far less physically demanding.

    The bronchiectasis must be a pain in itself. I don't get that but being on immuno-suppresants for the RA means I have to attempt to avoid any infections as we succumb easily and hang on to them determinedly. I wm currently avoiding my grandson who has a cold as we fly home next week.

    if you go to the Managing Arthritis section above you'll find some exercises. I did these several times a day before all my knee and hip operations. They really do help the recovery.
    The Horder Centre booklet they give to patients about to undergo surgery gives instructions on pre-op exercises, so I have been doing those for the ladt three month.

    Sent from my D5803 using Tapatalk
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Researchers are now beginning to think that there might be a genetic aspect to OA. It is the most common form of arthritis (there are between eight to ten million arthritics in the UK, the majority of whom have OA) and I think its ubiquity doesn't help to raise its profile or help those who don't have it to understand the trials and tribulations of those who do. Younger people are beginning OA, we've had members join who are in their early twenties and parents join on behalf of their young children or babies who have been diagnosed with JIA. Arthritis has no respect for age or gender.

    Arthritis can take much from us if we let it. It's finding out how not to cede to its more outrageous demands that takes time, courage and perseverance. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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