29 years old, just been told I have OA in big toe and ankle

sturge8
sturge8 Member Posts: 164
edited 9. Dec 2009, 04:39 in Living with Arthritis archive
Hi, I have just been told by my GP that I have OA in my big toe joint and ankle – possibly caused by repeat trauma. I am so scared as to what the future holds for me. Please can some one with similar OA contact me?

Comments

  • pheebs
    pheebs Member Posts: 202
    edited 30. Nov -1, 00:00
    Hi Sturge,

    Nice to meet you but at the same time sorry you've been told you have OA.

    I don't have OA in my ankle but I do in both of my big toes. Had a fusion operation and a pin inserted 4 years ago and now very rarely have pain in that toe. Other foot heading the same way.
    However, I don't (as yet!!) have problems with my ankles but I'm sure someone else will be able to advise you on that.

    On a positive note, I'm still able to enjoy hillwalking and I attend a jazzercise class - I just do low impact if my feet play up! Mind you. my right knee and hip are now causing a bit of a problem. I used to do a lot of running - in fact I was quite obsessive about it - and I wonedered if this was the cause of my problems. But I also have OA in my thumbs and fingers and as I dont't walk or run on my hands I've no idea why I have this problem!!

    Best wishes.

    Pheebs x
  • sturge8
    sturge8 Member Posts: 164
    edited 30. Nov -1, 00:00
    May I ask how old you are, and how old you were when you noticed things were not correct with your big toe? My biggest shock is the fact that I am suffering from this aged 29. Is it common to suffer this at my age? I do enjoy running and playing football. Football is probably the culprit to my problems. I haven't ran or played football since the diagnosis. I feel so healthy and really want to carry on with the sports I so much love.
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Surge,

    I am sorry you have had this happen to you. I have a lot of oa in my feet and some in my ankles but I do remember when I was first told I was shell shocked and my brain went into over drive on what it would mean to my life and my then dreams. I was still in my teens with my feet and my 20's with my ankle. There may be something they can do to help you? I went down the surgery option, with my ankle cus I broke it and it had to be plated and my feet from choice. I had my ankle done at 18 (it wasn't planned that one :wink: ) and they left the plate in so that may have really helped me out. The feet first they fused the toes at 26 and that held really well till I had further surgery on them both at 40 (sorry i am ancient now :roll: ) What I am trying to say here is it wasn't near as bad in reality as I was thinking it would be. Luv and a ((( ))) and a hope you find yours as easy to manage as mine were. Cris x
  • sturge8
    sturge8 Member Posts: 164
    edited 30. Nov -1, 00:00
    What went wrong with the second phase of surgery when you were aged 40? I am seeing a specialist tomorrow evening, so I will know more afterwards. I will let you know what he says. I also have a small bunion on the joint of the big toe. Has anyone got anymore advice for OA in this area?
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Sturge,

    Nothing went too wrong I promise. The original opp with the fusing went very well and 'cured' my then problems but over time the foot bones deteriorated more and was complicated by me loosing a toe as well. They didn't originally fuse the big toes, they did when I was 40 and chipped out some of the extra bone from the bits they can get it off. There was talk that the foot with a toes missing was coping with the oa better so one surgeon thought he would remove one of the same toe on my other foot but then this guy aid he thought more bone chipping, a quick break and reset and some ball joint removal would 'save' that toe for a while. They did my left foot first and when they came to do the right one he wasn't too happy with the left so re did it. They have been ok since though now I am asking the rumo to take the toe off! Not just for oa but i also have very bad circulation and have 2 toes that are so painful and swollen every time they get cold and well for me I would be better without them :wink:

    Mine is complicated by the bad circulation and your may be much better behaved and could be helped by seeing a podontist maybe? Take care Cris
  • carol101
    carol101 Member Posts: 677
    edited 30. Nov -1, 00:00
    Hi Sturge

    I have oa in my spine and i'm not much older than you, 35. I can't really comment on your condition but being 'young' myself, thought i'd reply.

    I have suffered back pain since i was 17 but was only diagnosed with oa in Aug this year. Whether it has been oa all the time or not i will never know but by what my x rays showed, it's been around a while.

    I found the diagnosis a bit of a shock and, like you wondered what the future holds. Well no one knows what the future holds, not even 'healthy' people. I have had my bad days with pain and depression but i also have a lot of good days. Believe me, your life doesn't end. There might be some activities you are unable to do but life isn't all bad.

    I still work 40hrs a week in a physical job. I stand for 8hrs a day, can lift anything up to 25kg (not on a bad day though) and there is a lot of bending involved and i can still do that with oa of the spine.

    Hope i've been able to put your mind at rest a bit.

    PM me if you want

    Carol XXX
  • sturge8
    sturge8 Member Posts: 164
    edited 30. Nov -1, 00:00
    25 years of playing football is most probably the culprit to my problems. I use to play so much up to a month ago. Although I didn't know why I was in so much pain for the last 2 months. Now I know why. This has come as a massive shock to me. You are right, I need to look at what activities I can do. I need to keep my fitness levels up and keep active, try to forget the OA. 2 and a quarter hours until my appointment.
  • jennifer22
    jennifer22 Member Posts: 22
    edited 30. Nov -1, 00:00
    sturge8 wrote:
    Hi, I have just been told by my GP that I have OA in my big toe joint and ankle – possibly caused by repeat trauma. I am so scared as to what the future holds for me. Please can some one with similar OA contact me?

    Hi Sturge8. I started having problems when I was 22 I am now 25. My doc thought I had a bone infection so refered me to the hospital they thought I had a stress fracture until they did bone scan before diagnosing me with oa in both ankles. Didnt offer me any treatment. Just take painkillers everynow and again. Still go to the gym just watch what I do. Find the cross trainer the easiest thing to do. Only downside cant really wear heels anymore unless I know that there is plenty of place to sit down and not too much walking Sometimes struggle to stand for any length of time without moving as my ankles seize up. Find a really good pair of shoes with a rubber sole help.Hope you get your ankle/toe sorted.
  • pheebs
    pheebs Member Posts: 202
    edited 30. Nov -1, 00:00
    Hello again Sturge,

    I'm an old goat compared to everyone else who has replied - I'm 55. First started getting pain in my right toe when I was around 40 but didn't have the op until I was 51. Must be a real shock to you having this so young.

    Because the joint is now fused I can't wear shoes any higher than around 1 1/2 inches but that's fine because I'd just look like mutton dressed as lamb!!

    Regards,

    Pheebs x
  • josiec
    josiec Member Posts: 386
    edited 30. Nov -1, 00:00
    I was 27 when I first started having problems with my big toe joint and it now appears to be early onset osteoarthritis. I have it in my hip and hands also. There is lots that can be done now, from painkillers and shoe insoles to the surgical options at a later date - I am waiting to have some bone removed from the joint and if this doesn't work the surgeon will then consider fusion. I am 32 now. Hope you get on okay with your appointment - let us know how you go on. Best wishes, Josie
  • sturge8
    sturge8 Member Posts: 164
    edited 30. Nov -1, 00:00
    Hi everyone, thank you for replying. The specialist was very black and white. He said yes I have OA and there is nothing he can do to stop it from getting worse. He can only offer pain relief. He offered me an injection there and then for the toe. I was in a massive state of shock, I declined his offer because at the time I wasn't in the right state of mind, plus I had no idea what this injection would do to me. I was scared because maybe I would not be able to drive home after. I have agreed to see him in Jan 10 to have the injection. Does anyone know about this injection? What it does and how long the pain goes away for? I asked him about the insoles idea, he said I shouldn't bother with that and just focus on buying a pair of shoes which have a strong leather sole which limit the bending of the toe joint . Has anyone got any advice on this? I was told that fusion is an option at a later stage, surely there must be something they can do before that. Can you walk/run with a toe joint fused together? For my ankle, I am waiting to be given an appointment for some physio. How will this help? I have come across some tips from friends and family, such as take gloucosime. Is this a waste of my time? My mum has got me taking cod liver oil tablets as well. I have been approached by a employee of 'Forever' who sell Aloe Vera. She says this product has gloucosime in and I will benefit from it - shall i buy this instead? Can I take Paracetamol daily for longer than 3 days? Sorry for all the questions, but I am new to this.
  • josiec
    josiec Member Posts: 386
    edited 30. Nov -1, 00:00
    Hi, What a lot to take in on a first visit! I'll try and help with as much as I can. The injection he is talking about is probably a steroid injection directly into the big toe joint. I have had this done 3 times, but my hospital does them as a day case using x-rays-I've always assumed that this is because it's a small joint, but each hospital may be different. Sometimes these have helped considerably for a few months, other times have not had as much effect. I won't lie - I do find them painful, other people may not so much. Footwear is tricky sometimes but can make a big difference. Personally I find custom made insoles have helped me a lot- different hospitals vary whether it is podiatry or patient appliances which make these. The downside is that they often don't fit in standard footwear-you can get extra deep footwear on the nhs but the styling and choice isn't brilliant. There are people who find that a stiff soled shoe gives them enough relief, though - we're all different. Fusion is a last resort as once it's done it can't be reversed and effectively destroys what is left of the joint. In theory you are supposed to be able to walk and even run I believe, but results can't be guaranteed-surgeons vary about whether it is a good idea or not. A procedure to remove some bone from around the joint can be done to try and delay fusion - this is what I'm waiting for. It is not a cure but can reduce symptoms for a while and buy time before a fusion becomes absolutely necessary. Sorry this is long, but I hope it helps. Best wishes, Josie
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hi, I'm fairly new to this myself and I don't have OA but I'll try to help where I can. Appointments can be overwhelming, I usually take someone with me because it can be a lot to take in at once. It sounds like the specialist wanted to give you a cortisone injection. I found this very useful for pain relief, although the effects have worn off over time. However, I was under the impression that they only did the injections with an x-ray to ensure it's going into the right place. Have you been offered any prescription pain relief? It's fine to take the regular OTC paracetamol for more than 3 days but something like co-codamol may help you more and it's worth asking about.

    I hope this is somewhat helpful for you.
    Take it easy.
    ~ Sophie
  • sturge8
    sturge8 Member Posts: 164
    edited 30. Nov -1, 00:00
    Hi Josie, when did you first notice the signs of OA in your toe joint? I am just trying to gauge how long I got until major pain sets in. At the mo, I am hobbling around wearing a pair of hiking boots, I haven't tried the insole approach yet, maybe I should. Yes I went to the specialist with a copy of my x-ray, so he can see whats going on inside.
  • eckstardeluxe
    eckstardeluxe Member Posts: 1,192
    edited 30. Nov -1, 00:00
    hi there

    I don't have OA in the same place but found out a week before my 33rd bithday I was going into end stage OA in spine and sacrum. I also have other issues caused by the OA.

    I sympathise with how you must be feeling right now. I came here in a very bad way, the members helped me alot. I had a relapse a few months ago, I'd never really come to terms with my illness since finding out in January. My problem was, mines was caused by negligence. I felt very angry and felt so awful about my future, especially given I had a three year old and a nine month old baby.

    It hits you the hardest if you have been active. There are no more Moonwalks or marathons for me and just the other day my hubby reminded me 2 years ago I was planning to do the Gobe desert trail. You have to learn about your illness as much as you can, knowledge really is power. But most importantly - medication, don't be afraid to take what you need. I am on 30 pills a day, I have kidney damage from an illness I was born with yet my scan last week showed no effects of the medication.

    Take care xxxx
  • sturge8
    sturge8 Member Posts: 164
    edited 30. Nov -1, 00:00
    Hi eckstardeluxe,

    I am constantly reading about the toe OA as at the moment this hurts the most. My partner is sick of me reading about it, she thinks it makes me worse, but its my way of dealing with the shock. I have read mixed reports about future ops and pain relief techniques. I am confused as to which way to turn. I hope to get a referral from my gp to see a rumatoligist, get some facts and proper direction. thanks for everyones support.
  • josiec
    josiec Member Posts: 386
    edited 30. Nov -1, 00:00
    Hi, I'd had fleeting pains for about 6 months before constant pain set in I think, but even now the nature of the pain does vary - it is always there to some level but is less troublesome at times than others. I am like you I think in that I like to know as much as possible, having said that though, make sure you are looking at reputable sites like this one - there is a lot of good info out there but also a lot of rubbish, claiming miracle cures and such like. American sites also differ in the terminology they use and in the way they treat things sometimes I have found in my experience. It is a lot to take in at first and there is only so much information you can absorb in the early days so try not to tie yourself in knots in a constant search for information - a bit at a time is better. One of the hardest things I've found personally is that nobody can tell you what the future holds and we are all different, but there is a multitude of support and various treatment options out there. Take care, Josie
  • lottiefox
    lottiefox Member Posts: 64
    edited 30. Nov -1, 00:00
    Hi sturge,

    Sorry you're having a tough time. I don't have OA in the toe but my left knee has it and like you, I've just had a baffling and overwhelming consultation with an OS that took my breath away. There has been some good advice on here and this forum is a massive source of help and support, so I hope you get the best relief you can find. Its very scary being told that things will only get worse, I know. Big hug and hope things get better. I take Cordells high strength glucosamine and chrondroitin and some lemon flavoured Omega 3 oil each day - tasty! Who knows if they will help but they won't do any harm!!! 8)
  • sturge8
    sturge8 Member Posts: 164
    edited 30. Nov -1, 00:00
    I am too taking glucosamine and chrondroitin supplements, however my gp said to me yesterday that studies show, these supplements have only helped people suffering with knee joint oa. Am i wasting my time and money taking these supplements? Saw the physio yesterday, he has given me some strengthening exercises for my ankle. He says i have dropped arches in my foot and i need to raise them. Things just seem to be getting worse for me with each visit to a specialist.