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OutdoorMaz
OutdoorMaz Member Posts: 19
edited 3. May 2017, 14:34 in Say Hello Archive
Hi Everyone

I have been lurking and learning for a little while and thought I'd take the plunge and meet you all!
I am a 52 year old female, self employed gardener and have spent the last year or so collecting a series of mechanical health issues. Namely...a frozen shoulder, maltracking knees, back pain, trochanteric bursitis and posterior tibial tendinopathy to be precise.

I've been to rheumatology this week and it seems some of it can be attributed to work related referred pain problems probably from overuse injuries and bad working practices. ie the ankle tendon is throwing out my knees which is causing the bursitis etc etc. I am starting to get some of it sorted by going to see about orthotics for my ankle problems and I've had a steroid injection for my shoulder which has helped a bit so far.

However, of most concern was the underlying discovery that I have osteoarthritis in my spine and hands. Facet joints and uneven gaps were mentioned and I was talked through the xrays but frankly it was a lot to take in. I also have very thin cartilage in my knees and horrible crepitus I think she called it.

I have lots of questions, I don't know what to think, how worried to be or who to ask but I'm thinking that people already dealing with stuff like this might know best!! Of most concern is work as the rheumatologist made it quite clear in no uncertain terms that I can't go on like this with my current workload which on thinking about it, is quite full on !

Thanks for listening and I'd be interested to hear what anyone thinks

Maz

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Maz,

    Lovely to meet you, welcome to the forum. It is a bit of a shock to find out you have arthritis of any kind, but to unexpectedly get such info in an unexpected area of your body is more so!

    Lots of people have varieties of arthritis, some have pain with not many symptoms recorded on x-Ray, others have what looks like severe arthritis but not the accompanying pain or range of movement issues.

    You have realised that posture and exercise are vital to protect your joints, and it sounds like you are seeing health professionals who can help - I would ask for referral to physio too, in Wales you can self refer, maybe that's how it works where you live.

    Here's some info re osteo of the knee
    http://www.arthritisresearchuk.org/arthritis-information/conditions/osteoarthritis-of-the-knee.aspx

    And of the spine
    http://www.arthritisresearchuk.org/arthritis-information/conditions/ankylosing-spondylitis.aspx

    Let us know how you get on, I am glad the steroid injection has helped your shoulder, I find them really helpful too.

    Take care
    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello Maz, I apologise for my tardiness in replying but I am having a rough time at the moment with my arthritis - I'm sure you understand.

    I started aged 37 and am now 58, I was self-employed tutoring dyslexics and battled on for 17 years before deciding enough was enough. I began with psoriatic arthritis, an auto-immune kind, and the joint damage from that has led to osteo but I am fortunate in that my back is - so far - doing OK. I think crepitus is the official name for the crunching and creaking that happens in our joints - they happen to many as they age but for us it is more pronounced as our cartilage dwindles. I am bone-on-bone through both knees and losing it in other places but that is the nature of the beast. Two articles on the net (which may be of interest) are The Spoon Theory and There's a Gorilla in my House; both give concise analogies of living with a chronic condition, in how it affects us and those around us.

    I'm off back to bed, it' s time for another snooze! I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    Hi Maz. This must have come as a shock. I guess it does to everyone but when your living is dependent on being very physical, that must be scary.

    It's true that when one joint gets out of kilter it can throw others out too. I hope the orthotic insoles can help to alleviate at least some of the pain but I do think you need to start planning a less energetic future. Exercising arthritic joints is good and necessary for them but not the sort of exercise that stresses them and makes them bear weight that they're no longer happy to take.

    Sometimes we just have to think out of the box. How can you modify the work that is most strenuous? Could you pay someone to do that? Could you make a sideways move into design or somesuch?

    You'll find plenty of people on here who share your symptoms and can empathise. Like DD, my back's pretty good. (It's just the rest of me that's rubbish :lol: ) If you have specific questions just fire away. Living with Arthritis is the best place to put them as more people look on there. I wish you good luck.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • OutdoorMaz
    OutdoorMaz Member Posts: 19
    edited 30. Nov -1, 00:00
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    Thank you for your replies and suggestions. I'm going to investigate the articles you mention DD, thank you.
    I feel sad to read that so many of you are suffering so much with these awful conditions and thank you for taking the time to be part of a community like this.

    I feel slightly 'abandoned' by the system at the moment and it's a huge help to be able to turn to you with my questions. It is a huge shock to be hit with the realisation that the job I love and make my living from is going to have to change.

    I am taking on board however, all the advice and suggestions I can and I've already made some changes. I have cut out two large and physical jobs, reduced fortnightly mowing schedules to weekly and have stopped taking on new clients. These are instant and fairly radical changes but will give me some 'wriggle room' while I think about income and the future and how to evolve things.

    The original investigations at rheumatology were based on a suspicion of psoriatic arthritis and the osteopath I've seen and my GP still suspect it. I have a gut feeling that something other than OA is at work and I am back at the GP this week to voice my concerns.
    If anyone who suffers from this is reading this I'd be grateful for an opinion.
    I have a frozen shoulder, bursitis, tendinopathy in one ankle and hints of it in the other plus plantar faciitis. These are all inflammatory as far as I understand it and I'm wondering whether they can be linked to psoriaric arthritis. I find it hard to believe it's all coincidental.

    Thank you all Maz x
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    Quite a lot of people say they 'feel abandoned' when diagnosed with OA. It's one of those unfortunate things that cannot be cured. We can usually do more for ourselves (by lifestyle changes etc – check out the 'Living With Arthritis' and 'Treatments, Aids and Equipment' tabs on the grey menu line above) than our docs can do for us. They can prescribe pain relief (On here, many of us call them 'paindullers' not 'painkillers'), physio, pain clinics etc but that's about it until we are handed over to the surgeons. Many GPs seem unaware that a negative blood test does not mean that the patient is free from an autoimmune form of arthritis such as PsA but rheumatologists do know their stuff and use other diagnostic tools.

    I presume you've been asked if any family members have an autoimmune disease, if you have morning stiffness and if you feel a tremendous fatigue when flaring and feel kind of 'fluey'. These all help to diagnose an autoimmune type. If you still think it might be PsA keep an eye on things, note any heat coming off the joints and take photos of any swellings. Has the rheumatologist signed you off or are you to go back? If the latter they may feel it could be PsA.

    You are very wise to make what changes you can asap. It's important, with arthritis, to cede the smaller battles in order to win the war. Prioritise, adapt and survive. It does help.

    Are all your symptoms coincidental? I honestly don't know. I've had RA since I was 15. Back in the '60s there was no decent treatment for it so things deteriorated and OA set in. I think I've collected most of the stuff on your list but whether due to the RA or the OA I really couldn't say. What I can say is that having the GP 'on your side', as it were, will be a big help. Good luck with it all.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • OutdoorMaz
    OutdoorMaz Member Posts: 19
    edited 30. Nov -1, 00:00
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    Well, slightly frustrating day today :roll:
    Went to collect my orthotics which weren't ready and went to see my GP who hasn't yet had the report from rheumatology ! Doh.

    In the meantime I'm pressing on with my plan of action, reading my replies and anything else I can find. There's a Gorilla in my House is particularly apt.

    It's unclear at the moment whether rheumatology want to see me again, I'm thinking not so it seems like the idea of an autoimmune condition is on hold. The flitting nature of my pain still concerns my GP and I have a family history of psoriasis so I'm leaving nothing to chance. I also have a swollen toe and a suspicious nail which I'm keeping an eye on without getting paranoid.

    My GP is very much 'on my side' and has given me some capsaicin cream to try as I can't take NSAIDS.
    I wasted a lot of last year seeing her practice partner who was very much 'NOT' on my side and seemed to think I was making it up as far as I can see. On my last visit to him he printed me off a leaflet about polymyalgia rheumatica and told me to go home and read it. If I thought I had it, I was to ring him and we could try a course of steroids!! Borderline irresponsible in my opinion. For a start I don't have the symptoms of it. Needless to say I have given up with him.

    Onwards and upwards and I'm now off to pilates (as instructed!)

    Maz x
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    Oh welcome to the world of chronic disease :wink: The reports have never come in as haven't anything else we require :roll: Certainly re consultants' reports it's always worth ringing to check first. Orthotics really should have let you know though.

    The PMR leaflet and steroids isn't too outlandish, though. Many people have autoimmune forms of arthritis which are very difficult to diagnose. Fine if, like me, you test sero-positive but very tricky for anyone with a sero-negative form of the disease(s). And a course of steroids is quite a common method of checking things out. (If it improves it's more likely to be autoimmune.)

    I hope the pilates helps.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • OutdoorMaz
    OutdoorMaz Member Posts: 19
    edited 30. Nov -1, 00:00
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    The world of chronic disease certainly is a frustrating one I agree.

    Still no letter from rheumatology. I've left an answerphone message with the secretary and have been ignored. The orthotics turned up eventually and were wrong so they are being remade. This is particularly annoying as they are being done privately in order to speed things along. I can only just afford them so tomorrow I shall be throwing my toys out of my pram and demanding action as it's a month since the assessment.

    I take your point about my GP and his leaflet/steroids idea. I didn't realise they could be used in that way but I'm still not convinced he has thought enough about my list of problems and this is not the first time I've crossed swords with him. He wouldn't refer me as he said the waiting list was very long. I asked him if he though I could have fibromyalgia and he said it didn't exist but was a handy diagnosis for patients who 'want to put a label on things' !!
    A little while back he gave me an asthma inhaler for a chest infection even though I'm not asthmatic. I had to go to an emergency GP on holiday to get the antibiotics I should have been given in the first place.

    Anyway it's three strikes and he's out as far as I'm concerned and I'm now seeing a different practice partner with more success.

    Sorry to rant. I know I'm not the only one to have frustrations with the system and I know lots of people have far more pain than me.

    In the meantime the pilates is both enjoyable and helpful so far although it's a lot to take in to start with. I keep forgetting to breathe! :lol:

    Maz x
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    I was always being told to remember to breathe when I did Riding for the Disabled.

    I'm sorry you're still waiting on orthotics. I hope they do help eventually.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
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