Joining the club

MrsTiggywinkle Member Posts: 6
edited 29. May 2019, 11:38 in Living with arthritis
So today I officially became a member of the OA club. I *think* it's OA - fairly certain I heard the 'O' word, but I was a bit busy scooping my jaw up off the floor after hearing I have arthritis in both hips.

Rewind a little: I've had joint pain for as long as I can remember. I'm (only just) 48. Over the years, I've had bloods and xrays done, all with 'normal' results, bar the ESR results being raised for a while. That one was put down to me having just had my daughter a few weeks before - my old rheumy reckoned it was post-partum causing them to be raised, and they'd be back to normal in a few months. I wasnt impressed when they did go back down as I had thought I was finally getting answers to the many years of pain, stiffness, fatigue etc etc. He decided I had fibromyalgia, and commenced me on various medications for the next 6 or so years. None helped with the pain, all got me stoned the entire time. A happy stoned, but not ideal when you have kids to look after. So each time I tried a new med, I'd have to wean off it again within a month.

About 7 yeard ago, I found a lump in my groin. Or rather, it yelled at me that it was there. I thought it was a hernia, GP didn't and prescribed antibiotics. Lump stayed and got a little bigger over the next couple of years. It also started getting painful. GP referred me for an ultrasound scan - a cluster of enlarged lymph nodes, no idea why, but they are still enlarged and painful to this day.

Fast forward to just before Easter. I went to my new GP (I'd moved to another area) and complained about how this lump in my groin is really bothering me now. It affects my daily, it wakes me at night, it feels like its catching, the pain goes down my leg and also into the pubic bone area. GP can't feel the lump (?????) but sends me for a pelvic xray. Naturally, the xray happens the day before Good Friday, meaning a long wait for results.

I got those results today. I went there all psyched up for the chat about how my xray came back normal, psyched myself up for the fight to be believed that I am in daily pain and it is affecting my life. My jaw dropped as he told me I have arthritis in both hips, the left being worse than the right, which he cant understand as my pain is in the right groin area. Being in shock was a bit of an understatement, I couldn't focus much on what else he said initially, but I think he said OA, he mentioned osteophytes(?) and suggested physio, but to return if it doesn't help or it gets worse. (The pain, because I've no way of knowing if the arthritis has got worse lol).

No mention of pain relief etc, but given how stoned I was previously, I'm going to stick to paracetamol and the odd codeine when I need to. For now. I'm planning on visiting occupational health in work, hopefully get them on my side and organise better seating etc for me, and maybe even get me near the top of the list for a car park permit with work (though I'm not holding my breath for this one!).

Long term, I'm probably going to have to find a new job, closer to home, which isn't going to be easy as there aren't many full time jobs around me, and those there are tend to go to someone who knows someone etc. I cant afford not to work, and even though I've been suffering for a long time, I'm not really at the point to be able to claim/qualify for any PIP or whatever. I can walk, I can care for myself blah blah, so until such times as I'm too useless, I need to work.

Anyway, that's my story. I'm hoping to bounce off you guys on here, I'm sure I'll need advice as time plods along. I've been lurking since around 7pm, just reading everyone's posts and its helping me get my head around it. Thank goodness for safe havens like this!


  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I'm glad we come over as a 'safe haven'. As DD is wont to say – we all 'get it' because we've all got it. In my case RA and OA. (I'm just greedy :wink: )

    Over the very many years, I've had hips and knees replaced but can't relate to lumps in the groin. Pain? Oh yes, I can relate to that :lol:

    I don't know what you were given for the fibro – I gave that one a miss – but it sounds like it was strong pain meds. I give them a miss too, as far as possible, because being spaced out as well as unstable on the feet is not a good combination. Plus, it seems one has to keep increasing the dose to get the same effect. And then other problems kick in. No, not for me.

    I think no-one expects to get arthritis. My husband, at the not-so-tender age of 76, is astonished that he now has it in his hips. A young sportsman like him? Surely not :roll: Actually, his sporting activities have stood him in good stead. When the GP saw his x-ray he'd have sent him straight to the surgeon until being told he still played golf every week, went for longish walks and gardened in between. His muscles must be incredibly strong and supportive which is always recommended.

    Re your GP not understanding why you have more pain in the 'less-affected' hip. It doesn't surprise me at all. It often happens. It's all interconnected and we use one joint badly in order to compensate for another.

    I'm sorry it's come as a shock. I suggest you read up as much as you can 'Living with Arthritis' tab on the top menu is a good place t start. Eat healthily. Don't smoke. Exercise but sensibly. It's a pain in ever sense of the word but we'll do our best to help you come to terms with it.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    In order of diagnosis I have psoriatic arthritis, osteoarthritis and fibromyalgia. I remember my shock when OA was diagnosed as I thought I'd done the arthritis thing. :lol: The fibro diagnosis was shrugged off, I was too tired and run down to care and remain so.

    The meds I take for the PsA do nothing for the OA, of the two I prefer that one as I am under the illusion of exercising some control over what's what. The fibro is ongoing but nothing helps any of the three conditions pain-wise, never has, never will. Pain-relief merely dulls the sharper edges but does so enough for me to get on. I think osteophytes are extra bone growth, the body does this as a way to mend itself but it doesn't work. I have them on both knees and I think they're starting in my ankles too. Wot larks, Pip! :lol:

    I suspect the pain is worse on the right side as it is taking the strain of the more badly affected left hip, to me that's common sense but I am not a doc, just a veteran of the disease. I was in receipt of higher rate mobility DLA but that is being changed over to PIP so I am fully prepared to be refused; time will tell on that. I worked for seventeen years but had the 'luxury' of being self-employed. What do you do? DD
  • MrsTiggywinkle
    MrsTiggywinkle Member Posts: 6
    edited 30. Nov -1, 00:00
    I probably shouldn't be as surprised as I am; my entire Mother's side has arthritis, including OA, so it follows sense to expect to get it as well. I'm probably not mentally ready, seeing as I still like to think I'm in my 20s!

    I've previously been on amitriptyline for thr fibromyalgia, until a different doctor decided I was far too young to be on such a medication. It helped in some ways, more as a muscle relaxant at night than anything else. I eventually progressed through gabapentin and naproxen but was too stoned to function in any kind of normal capacity, so took myself off them. I've stuck with paracetamol as and when I need it, with some codeine if I really really need it.

    Im currently a receptionist in a very very busy hospital, the unit is kind of attached to a&e but in another floor. I changed jobs a few years ago as being a healthcare worker was getting too much and I wasnt recovering from the shifts very well. I have anything from a 50 minute drive to work, up to an hour and a half+ depending on traffic, and then the same going home. I do long shifts - 7am to 7.30pm/7.00pm to 7am. I find doing 5 shorter shifts just as exhausting, probably more so, as I need to get up around 4.30am for work on day shifts, so 5 if them in a row wipes me out. I can't afford to go part time. Hence why I'm trying to find something closer to home.

    I'm pretty sure if I pushed for referral to rheumatology or orthopaedics, I'd find arthritis in a lot more places; likely my knees, feet and shoulder joint, as they are as painful and stiff, but for now, ignorance is bliss :wink:
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    It's very difficult to say whether or not genetics comes in. Certainly, with autoimmune forms of arthritis it can, which is not to say it does. And, if we have one autoimmune disease our children can inherit a potential for another. OA isn't autoimmune but there's a school of thought which believes it could sometimes, possibly, have a genetic origin. Also, methotrexate, a Disease Modifying Anti-Rheumatic Drug (DMARD) used in the treatment of autoimmune types of arthritis, has been or is being trialled for OA. Lots of questions: very few answers.

    You don't need a referral to rheumatology or orthopaedics for x-rays. Your GP can refer you. But, given that the x-rays you've already had done do reveal OA, he / she is unlikely to bother. The usual treatment for OA is anti-inflammatories (ibuprofen, naproxen etc) and pain relief. (Anti-inflamms shouldn't knock you out. That'd be the amitrip or gabapentin.) The rest is up to us to eat and exercise sensibly, keeping our weight down and muscles strong.

    Your work does sound physically demanding and I think it would be a good plan to keep an eye open for something easier before it becomes a necessity.
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
    I can fully understand you shock at being told you have RA I was 40 when I was assaulted at work ( nurse ) I was told by the neurosurgeon I had 3 damaged discs in my neck but also I had spinal degeneration in my spine ( it was as bad as 80 yr old) I had been blissfully unaware of it. I have OA in most joints fibromyalgia, crohns and now RA but am in remission at the moment.
    I too was give anti depressants and they didn't agree with me they tried several but I couldn't cope with being a space cadet, one made me hyper sensitive to noise which wasn't good living next to the neighbour from hell, they did diddly squat for my pain. I would rather be in my right mind than out of it.
    Your other hip being affected isn't surprising we all unconsciously adapt to joint damage/injury by protecting the affected part and using alternatives the problem comes to light when you have worn out those joints too. Hope you get the answers you look for we all know what you are going through.

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