Newly diagnosed - I know nothing!

rumncoke
rumncoke Member Posts: 4
edited 7. Dec 2012, 17:20 in Living with Arthritis archive
Hi I am 49 & I've been diagnosed with OA today - in the thumb area- basal?

I don't know what to expect, I read that OA doesn't spread but I have also read stories of multiple OA areas around the body, I already have 2 extra bone spurs grown in my feet, which don't cause pain any more, I also have very slight twinges in my knee but its not bothersome, but i worry that this will mean i'm likely to suffer with them soon.

My thumb is painful and i can't use the car handbrake or hang a coat up yet other more strenuous tasks seem fine. The therapist made me a splint. Will this weakness come and go in phases or is it permanent?

I was shocked at the diagnosis so didn't ask the relevant questions.

I have visions of being unable to do anything for myself in future, like driving, dancing, working - even making a cup of tea but maybe i'm panicking unnecessarily? As im going through a relationship break up now that's scary too, I'd be unlikely to find someone new in my life if they'd be likely to end up caring for me - and I would'nt want someone to have to!

I've read a few posts on here and am so saddened by what some of you have been through and also frightened for myself.

Thanks for reading, sorry if i come across as selfish, i just dont know what to expect.

Comments

  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    You don’t ‘come across as selfish’, rumncoke (Great username. I like it too :) ): you just come across as new to all this, confused and anxious – all perfectly normal responses.

    I’m sorry about the diagnosis and consequent problems and, clearly, this has come at a bad time for you with your relationship break-up. Unfortunately, although it’s most unlikely, and although you would be very unlucky, if you ended up unable to make a cup of tea, the one thing none of us can predict is the future. The trouble with arthritic futures is that they all bob along at their own pace and the paces vary enormously. There is no ready map, I’m afraid. Some will only have one joint affected: others will have several. Some will progress quickly: others slowly. It’s a lottery.

    As for finding someone new – well, here arthritis cuts two ways. You may, unselfishly, not want a partner to end up caring for you but, if someone does really care, they care lock, stock and barrel and won’t be put off by arthritis. However, you may well find that the waste of spaces don’t hang around too long :wink:

    On a purely practical note, because of rubbishy thumbs, I had my car hand-brake adapted so that I pulled it on and pushed it off. Much easier.
  • Nicchick
    Nicchick Member Posts: 191
    edited 30. Nov -1, 00:00
    Caring for someone you think a lot of is not affected by arthritis - I had a longterm (excuse my sweary bit) B****** of a BF before I first became ill and he was actually (surprisingly) brilliant for the first few months but struggled with watching me in pain and we eventually split up.

    My current (and hopefully permanent) OH also has RA and is wonderful! I fancied him for ages, only found out he had RA after I found that I did (he's my neighbor) and I think we work because we both care about one another and would even if we didn't have RA. Isn't that what a relationship is supposed to be about?

    Hope you get your head round all of this arthritis business!

    Nx
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Rumncoke

    I am sorry to read your message. I have had oa in both thumbs for years now and it did used to hurt from time to time. Now I rarely experience any pain in the thumbs but have lost some strength in that area but still seem to cope ok, sometimes needing help to open a jar or similar, with an aid or someone who is around at the time. Besides the base of the thumbs looking quite unsightly I can still easily make a cup of tea and use secatours in the garden and make bread and generally do what I want to. Yes, it may take more effort but my motto is don't give in to it, exercising the joints is good. I am very nearly 62 years old and my thumbs started to deteriorate in my 40's. I have never needed/been offered splints but have had quite a few cortizone injections in the past which have helped for a few months. I have always made myself do things with my hands so perhaps the exercise has helped. Please try not to worry too much. We all have our own story to tell and there are so many variations of how people cope with similar symptoms in the same areas.

    You look after yourself,
    Elna x
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hi Rumncoke
    And a warm welcome from me
    You do not come across has selfish only scared of the unknown
    And that is totally understandable, Arthritis is so hard to predict , but like Elna I have it in my thumbs , only one is causing trouble at the min, and I had a cortizone injection around 7 weeks ago, and I am thrilled with the results,I do have it in other joints but that dosnt say you will.
    My brother had it in one hip many years ago and that was that so far so good for him
    You have found us lot now , and have people to talk to that understand how you are feeling.
    You take care xx
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi rumncoke, welcome to Arthritis Care forum, I have Osteo-Arthritis in my right thumb. As the others say, you must be scared of what's to come now. Don't be, life's what you make of it Arthritis or no Arthritis! But you made the right choice joining us!! :)
  • Soretoe2
    Soretoe2 Member Posts: 198
    edited 30. Nov -1, 00:00
    Hello rumncoke, everyone has so far given you good advice about coming to terms with having OA. I just thought I'd post a comment about arthritic thumbs.
    I have had two thumb fusions, with pins, after years of putting up with pain and all the difficulties that come with OA in the thumbs.
    I can honestly say it was a good decision. They are now much more stable and relatively pain free compared to the awful pain I had in them before the operations. Although I don't drive due other disabilities, there would be no problem driving because of the fusions.
    They are obviously not perfect thumbs but I soon adapted to doing things in a different way. Mostly better than I have for years.
    It is always difficult to come to terms with a physical problem newly diagnosed.However you will find that as time passes you will adapt and surprise yourself how used to the effects of the arthritis you will become .
    There is life and good relationships with arthritis I promise you.
    I wish you the best of luck, keep posting , there' s a good community here that can offer you support.
  • rumncoke
    rumncoke Member Posts: 4
    edited 30. Nov -1, 00:00
    Thank you all so much, i can see you're very supportive, It's just I haven't been told anything about what will happen, but i guess no-one knows?

    It's daunting to imagine yourself disabled when you're still quite young, independent and have a busy active life, it's quite frightening.

    I could learn to live with the thumb I guess, it's more the worry of having the disease everywhere, though i know i shouldn't be fretting about what "might" happen!

    Thanks, i will pop by here again :)
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I was diagnosed with RA at 15 and I was far too young and stupid to even think about what might happen. Retrospectively, that was probably very good. I just got on with stuff and did it. Enjoy life, rumncoke. Just be aware if stuff gets worse.
  • Helenbothknees
    Helenbothknees Member Posts: 487
    edited 30. Nov -1, 00:00
    OA doesn't always spread. I can't speak for others, but I had it diagnosed in my knees 15 years ago, at almost the same age as you. It appeared to get almost completely better for about 10 years. Then it got worse gradually, until I had two knee replacements last July....at age 64. My new knees are great, and all my other joints are just fine. Don't panic!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    All of us when newly-diagnosed wonder what the future holds and none of us know. I started with an auto-immune type (undiagnosed for five years and therefore untreated) and that has led to OA in my knees and ankles. I'm sixteen years in and I get by, all of us on here get by and you will too. Over time you will find your own ways of coping and develop your own strategies for managing life. Keep in touch, we're worth knowing. :wink: I wish you well. DD
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    I've got that, consultant said it would hurt for about a year and then get a bit stiff. I am an artist but it's really the least of my problems. I just switched to touch screen phone and trackpad laptop. I've got RA and other joints much more painful and disabling but have little OA in them.
  • GraceB
    GraceB Member Posts: 1,595
    edited 30. Nov -1, 00:00
    Firstly welcome to the Forum. I hope you find the gang on here as supportive as I have. Whenever I'm not sure all I have to do is to post and I know I'll get support and some very good advice.
    I have OA in multiple weight bearing joints and - for me - it has spread over the years. However, just because it's spread for me that doesn't mean it will do the same for you.
    I take a very positive approach to having OA as I refuse to let it beat me - typical Taurean - stubborn! I have pushed into the background/past (whatever you want to call it) the things I used to do and can no longer and instead focus on what I can still do. I look forward and not back. I try to turn negatives into positives, e.g., as I can't wander around window shopping I've managed to save a little. Negative = positive.
    Keep asking questions of your GP/consultant and keep asking until you get the answers. If it's a long time until your next appt with your consultant, why not write to him/her asking them to reply? It's worth a shot.
    Keep posting on here - you'll get fantastic support. Stay positive.
    GraceB
  • rumncoke
    rumncoke Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi Again, thanks for all your replies.

    I'm still finding it hard to come to terms with this tbh, I am trying to be positive and I hope i will get there.

    Yesterday I woke with pains in my leg and hip and I still have it now when I walk or move around, it seems to be symptomatic with OA, surely it doesn't spread that quickly? I only found out I had it in my thumb a week ago! I've never particularly noticed hip pain before but I'm not imagining this!

    The thumb pain is sometimes worse than others, should I try to do the exercises the physio gave me regardless of how bad the pain is? I find the splint very helpful but I'm not sure when or how long I should be wearing it?

    I'm unsure of what pain relief to use, I haven't taken anything as yet apart from codeine when I went dancing once, I like codeine as a pain killer but I'm thinking i should try something less potent until I have to?

    Also re exercise, I have been told this is beneficial, I normally go salsa dancing 3 x week but as salsa is led totally by hand movement i'm not sure if this is good or not? I don't expect the health care professionals would be aware of that and are just thinking dancing is a good activity to do. Maybe that's contributed to my thumb problems?

    Hope you don't mind the questions, my consultant has sent me an appointment but it's not till the end of March!

    You guys are braver than me, I guess you've had to be and I suppose I will be too, I just haven't got there yet! :(
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello again rumncoke, it's nice to hear from you. I can understand you are fretting about things (we all do from time to time, no matter how long we've been affected) but what I have learned over the years is that having an ache or pain in one bit of you makes you more aware of things happening elsewhere (which one would normally dismiss as being one of those things). It could be that you have slept awkwardly, hence the hurty lower limb but I think you will learn in time to tell the difference between a general 'aging' ache and one that is arthritic in nature because they do feel very different - for a start the 'general' one eases and goes away. Many people claim to have arthritis but have somehow failed to go to the docs with it. :wink:

    Exercises are good but not to the point that they aggravate the pain one has. I am doing my hand exercises and they hurt but that is because I am stretching new scars in an effort to avoid adhesions. Once the hands have relaxed again the pain eases. In my knees and ankles however I press on regardless with the exercises because I am not moving around enough at the moment (I can't use my crutches) but I've been dealing with this since '97 and know my limits. Usually. :wink:

    Take care, keep warm (cold aggravates OA) and take your time in adjusting, it won't happen overnight. Investigate gadgets such as key turners, jar openers, palm peelers etc all to help ease pressure on using your thumb: is it the one on your dominant hand that's affected? DD
  • ShulaArcher
    ShulaArcher Member Posts: 174
    edited 30. Nov -1, 00:00
    Hello

    You're being very open about your feelings and have come to the right place for lots of support and advice. I'm affected by OA in my hands/thumbs/wrists. I was surprised when I was in my 40s to find out, after X-ray, that I already had a severely degenerative left thumb. To cut a long story short, I got on with my life, making adjustments like changing to an automatic car, and the pain disappeared after a few years. Apparently, this was because the bones fused - medics have told me this is "nature's way" to heal. I only started experiencing pain again last year, at the age of 57 and have since had surgery. But, as other people have written, everybody is different. It's a case of getting as much info about the condition as possible, seeing what medication helps (perhaps steroid injection), using a splint if/when this is useful. It may be helpful to keep a diary to see if anything in particular sets off your pain and what is most useful.

    All the best
    Shula
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Hi - I'm an infrequent visitor to this site but noticed you "know nothing" appeal while scrolling for updates on those wonderful people who are frequently here helping others and requiring support from time to time. I have RA but mostly it is being kept in check by disease modifying anti-rheunatic drugs, which aren't nice at all, but I'm very thankful indeed for their existence. I have bits and pieces of secondary OA in my fingers and have learned now to distinguish between the different types of pain. I think the main thing is that you learn to look after your hands more and not abuse the many delicate joints that make up each hand because unlike knees and hips they are impossible to replace for being so small.

    When an occupational therapist came to my house after my physio referred me to her she brought lots of devices and gadgets and a sheet about hand care with arthritis. I found the advice to respect pain and rest the affected joints as much as possible very difficult to follow but as this OT was watching me around the house and in my studio (I'm an artist too) she made the observation that I was doing a lot of good things instinctively such as using my whole arm to twist lids round and turning taps on and off with my elbows - I hadn't even noticed but my wrists and knuckles on both sides were so terribly painful and swollen that I'd just developed strategies to protect these joints. If you see a physio then perhaps you could ask about seeing an OT to get the same kind of advice.

    I maybe wrong but I don't think OA affects multiple joints in the way that the autoimmune inflammatory arthritis's do. It's more wear and tear so a question of learning to look after your other joints as well as possible e.g not jogging or doing exercises on hard surfaces and keeping trim and fit as possible should be a deterrent as it's not systemic like RA or PsA are. Good luck and stay around here - there are so many brave and brilliant people that you'll be inspired. And it's always good to learn more about the various forms of arthritis too so you can join the relatively elite gang of those who know just how terribly these conditions can affect people and also learn a lot about how to help yourself from them too. Mat x

    Ps and I'm 49 too but only for another month (aahhh!) - there are many far younger than us with arthritis though so don't let it make you feel older than you are please.

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