Feeling frightened

louisarm
louisarm Member Posts: 52
edited 9. Aug 2013, 09:15 in Say Hello Archive
Hi,

I am a 51 year old woman and until recently thought I was in good health.

I have had slight pain on and off (mainly off) in my left hip for several years. I did go to the Dr originally and there was no follow up. I foolishly thought I was just getting older.

This past month I have had had pain at night and have now been diagnosed with severe osteoarthritis in my left hip. It seems that almost overnight I am now aware of pain in nearly every joint. I am on naproxen and paracetamol which are helping with the pain.

I am so angry with myself for dismissing my symptoms. I now fear every joint will need replacing. I already have osteopenia.

I went to work to work this week and found it very painful, I cannot believe how quickly all this is happening.

I realise that this may sound dramatic but has anybody else had suicide thoughts when they are first given a diagnosis?

I feel so alone and I am sorry to whine I realise that there are many people much worse off than me, but I feel so frightened.

Comments

  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hello louisarm and welcome to the forum.

    I'm sorry you feel so alone. We all do at times. Pain is very isolating and sometimes quite scary too. Yours has suddenly increased out of all proportion so no wonder you are feeling so bad.

    Please don't beat yourself up about 'dismissing' your symptoms previously. It really wouldn't have made any appreciable difference. The auto-immune forms of arthritis are a different ball-game and need meds asap but OA unfortunately does what it does. The pain can be helped in several ways but that's about it.

    You are already taking an anit-inflammatory and one of the misnamed 'painkillers' :roll: (They don't. They only dull it.) Another thing which might help are exercises as they keep the supporting muscles strong. You could ask to be referred for physio or just check out Arthritis Care's exercise boolklet. (See 'Publications & Resources' at the top of the page.)

    The pain in your other joints might be arthritis starting up there or might just be referred pain. When one joint is bad we tend to try to 'spare' it and this means we walk, move and generally hold our bodies in ways which put pressure on other bits.

    There are people 'out there' who are far worse off than any of us but that doesn't take away our own pain, louisarm. You are not 'whining' you are stating facts and asking questions. That's the sensible thing to do. We can't take away arthritis (if we could we'd all have left ages ago :lol: ) but we can empathise and understand and sometimes offer helpful hints.

    You'll find more people around on the Living With Arthritis forum. Try copying your post there. If you'd like a chat with one of our Helpline people you could ring them though I'm not sure if they're about at weekends. And, if things are really tough, don't feel suicidal alone. If 'talking' to us isn't enough then ring the Samaritans.
  • louisarm
    louisarm Member Posts: 52
    edited 30. Nov -1, 00:00
    Dear Sticky Wicket,

    Thank you for your response, it meant a lot. I am still in a state of shock and have aged about 10 years through not sleeping these past weeks.

    Thanks for saying that the disease would have progressed anyway but I still wish I had taken it all a bit more seriously. I am an anxious person at the best of times so trying to stay positive will be a massive challenge for me.

    But if I don't that way leads to madness and a total bore for others. I have a lovely husband and I now feel guilty that he may have to look after me, I don't think I can cope with that.

    I looked on the website and there are some courses to help to cope with diagnosis. I will also take up your suggestions about physio.

    Thanks again for your reply I feel a bit less alone. I don't know how to copy and paste to the other boards but I will try and work it out.

    Louisa
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I hope we can help with information and support.

    You have a diagnosis but it is not the end of life as you know it - life as you know it will continue but with adjustments and a period of trial and error as you learn to live with the OA (osteo arthritis). I have it too (both ankles, both knees and my right hip) as well as an auto-immune arthritis which affects those and other joints too. My husband does not look after me because I can manage perfectly well - albeit slowly and with planning but I have no intention of becoming dependent on him in any way. He says the arthritis is 'our' problem but I reckon it's mine. :wink:

    I had a period of five years before anyone took my symptoms seriously (I began with the auto-immune one) but, being used to rubbish health I didn't pursue matters as I should. I think it must be far harder to deal with and accept if one is used to good physical health and I don't envy you that. There are around ten million arthritics in the UK and the majority have OA but everyone is different in how their version of the disease develops and affects. The medication should help but if not there are other meds to try. Exercise is important but that should be low-impact and not done to excess. I have to go and eat, my husband has cheffed (he does at weekends). I hope to be back later.

    Don't fret too much - you are far from alone and we do understand. I wish you well. DD
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    You have had a shock. I'm sure positivity will come but the shock must be allowed to register and given due weight first.

    As for your 'lovely husband' – I have one of those too :D We are lucky. The bad thing is that arthritis does affect an entire family, not just the person with the diagnosis. It will affect your husband differently because he doesn't have the physical pain and stiffness but he will be sad for you just as you would be for him if the boot were on the other foot. Of course he will have to 'look after you' to some extent but isn't that what any kind of marriage is about – caring about and taking care of the other? I know you're really worried that you will lose some independence and he will have to pick up the slack but that doesn't have to be all bad news.

    I'd had RA for seven years when I married Mr SW. I was totally independent and, being young, we kind of expected that to continue :roll: It didn't but that doesn't mean to say our marriage has deteriorated. I think the essential thing is to keep talking to each other honestly about feelings and staying flexible in attitudes so that adapting to change is easier. Keep your husband on board so that he understands how things are for you. There might be some physical tasks he'll need to take over but you can compensate for that by making other, less physical, tasks your own.

    I've had arthritis now for 52 years. Both my hips and knees have been replaced. Life is good and my marriage is good. Our sons and grandsons are healthy and happy. Try to live in the present and not worry too much about imagined futures which might never happen.

    Copy and paste? Just as you would anywhere else. Highlight the text, press 'control' and 'c' together, start a new thread on LWA and then press 'control' and 'v' together. Good luck!
  • louisarm
    louisarm Member Posts: 52
    edited 30. Nov -1, 00:00
    Dear Stickywicket and DD,

    Does a diagnosis of severe osteoarthritis always mean a hip replacement is needed?

    I am driving myself mad with anxiety (even though I know it is the worst thing I can do). Also as it is severe and I keep walking on it will that mean more damage to the joints?

    Many thanks if you can help

    Louisa
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hello again, Louisa,

    It would be better to put these questions to your GP. We don't have any medical qualifications on here. For what it's worth though, I think the likelihood is that, at some point, you'll need a hip replacement. I don't know if you have any particular reason to fear one - other medical conditions, a need to be available for an elderly relative etc - but I can assure you that it's a very common operation with a very high success rate. (Arthritis Care have a booklet on 'Surgery' if you'd like to read up on it.)

    As for walking on it - I think the worst thing you could do for it would be to try to preserve it by sitting around doing very little. Exercise is good for it. Cycling and swimming are the best. If you do too much it will let you know and that's quite useful. Get to know what it will and won't tolerate.

    I can see you're anxious about it and I wonder if it would be useful to you to give our Helplines people a ring. Sometimes talking is easier than writing (though do feel free to get back to us, too) and I believe they're very good listeners.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I agree with Sticky, some things we can answer but others not. I have OA in both ankles and both knees, I may be able to have new knees on the NHS but not for at least another year - what am I meant to do in the meantime? Float everywhere? :lol:

    Everyone's future is uncertain - the trouble is that when one is healthy one doesn't think so. The uncertainty appears to treble, quadruple, whatever-uple once a disease is involved but, in reality, it makes little difference. I am neither an optimist or a pessimist, I have learned to take one day at a time, to the enjoy the betters ones and not champ at the bit too much about the poorer ones. Today is one of the latter but I managed to get into town with my husband to look at the shops and 'do' lunch. Now I am recuperating on the sofa, and will stay so for the rest of the day but so what? We had a good time and that is far more important than my cruddy joints - well, I think so. DD
  • louisarm
    louisarm Member Posts: 52
    edited 30. Nov -1, 00:00
    Dear Stickwicket and DD,

    Thanks again for your thoughtful and insightful posts. I am struggling, but a little bit less because of your encouragement.

    Kindest regards

    Louisa
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I think we all struggle from time-to-time, no matter how long this malarkey has been present in our lives. My auto-immune arthritis began in 1997, I was officially diagnosed with additonal OA in April 2011 and for sure things ain't be easy since then. Sticky has a much longer history than mine, she has taught me a great deal about living with arthritis and I know I still have much to learn from her and others. I don't use my signature on here too often but I will post it after this note.

    It takes time to come to terms with events, your world has been rocked to its very core (there's a lovely French word, I think it's spelled 'bouleversee' but I can't find the right accents) and I feel it sums it up in a way that English cannot. You've found us, and we will do our best to help. Please post again on the Living with Arthritis board on here, not many look in on here but I am sure you will garner some more replies there.

    I wish you well. DD

    PS Please google the Spoon Theory and There's a Gorilla in my House. These may help both you, your husband and your family to better understand what you are facing.
  • louisarm
    louisarm Member Posts: 52
    edited 30. Nov -1, 00:00
    Dear DD,

    I am more than happy with the replies you and Sticky have given already, but I will post there too at some stage.

    I have just read the spoon theory, thank you. I have gone from well to this so quickly I still cannot grasp fully how I will have to adapt.

    I realise you are not a Dr but how do you know if the joint damage is so bad hip surgery is required? Should one have an x ray every 6 months to check?

    I will discuss with my GP but with all the cutbacks in the NHS will they try and fob people off and then lasting damage is done to the joint?

    Are we talking a period of years here? or months?

    Again don't worry if you can't answer just any general guidelines would be appreciated.

    Thanks again you have no idea how much better I feel communicating with you and Sticky.

    Louisa
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    louisarm wrote:
    how do you know if the joint damage is so bad hip surgery is required? Should one have an x ray every 6 months to check?

    I will discuss with my GP but with all the cutbacks in the NHS will they try and fob people off and then lasting damage is done to the joint?

    Are we talking a period of years here? or months?

    The docs decide when surgery is needed, Louisa. At some point they'll do an x-ray (You could ask for one now if you wanted) but you don't want them every six months :o That wouldn't be good for you.

    You are right that the NHS cutbacks do seem to play a part in determining who gets replacement joints and when. At 51 they'll probably want you to wait a bit longer as this will make you less likely to need a further op as/when/if the replacement fails. The waiting is painful but I don't think it's possible (Don't take my word for that :roll: ) to do damage that would make a replacement joint impossible. I managed to shatter one hip and the THR they put in is still giving me no problems some 20 years later.

    I don't think anyone can give you a timescale as we're all different. Well, if an orthopaedic surgeon were to take x-rays now then possibly he might be able to give you an idea but I doubt anyone else could.

    It's all a lot to get your head round, I know, but you'll get there.

    By the way, if I've taught DD some useful stuff, it's definitely been a mutual thing :D
  • frogmorton
    frogmorton Member Posts: 28,046
    edited 30. Nov -1, 00:00
    Oh Louise

    I can see you must be in shock at the moment. I am so sorry, but also want to reiterate that your life isn't over.

    The reason I didn't post sooner is that I was doing the race for life in support of some friends who are fighting cancer ATM. This after having had arthritis for years :) Ok 'my group' were close on last in, but we did it :) Proof I hope that things should be a lot better than your worst fears.

    My MIL had an XRay on her hip. Doc said 'slight OA'. 2 years later she was in a deal more pain so I forced her to go again. This time the Xray resulted in hip surgery 3 months later. She lives alone and coped with all of it well alone with no carer, just some company for her showers and a cleaner.

    I think you should go an see your GP as soon as you are able and take with you a list of your concerns so that you can get the answers you need. Might be an idea to take your husband too (to aid your memory - I always forget half of what is said :oops: ).

    The best thing is you have already found this forum and us lot on here :)

    Take care now

    Love

    Toni xxx
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi louisarm;

    Sorry to hear of your troubles.

    While you have a lot to deal with all at once, please try to be patient with yourself and know there are lots of people here dealing with similar arthritis problems who will be happy to help. You're bound to feel very low and overwhelmed; it's a heck of a thing to have diagnosed. There are lots of things out there to help, drugs, physio, etc.

    I pushed through the pain for quite a long while and refused to believe something was wrong besides getting older. I blamed myself for a very long time but now I think pushing myself was entirely a normal human reaction. I have heard lots of similar stories from other arthritis sufferers.

    best wishes and know you are definitely not alone,
    Anna
  • louisarm
    louisarm Member Posts: 52
    edited 30. Nov -1, 00:00
    Dear Toni, Anna, DD and Sticky,

    I am overwhelmed by your lovely replies. What a godsend this site has been for me.

    I rang the website today and spoke to a lovely lady who let me ramble on, so encouraging and positive.

    I also went back to the Dr and tried to pin her down on some type of time scale (for surgery). She said if I can cope with the pain then I don't have to have surgery, even for severe arthritis, however, I am a bit sceptical about that. But she did say that I am not doing any damage (to my hip) if I leave it longer so that put my mind at rest a bit.

    As Toni shared about her friend I will just have to let the pain be my guide.

    I did tell her about the pain in other joints and she examined me and said she was not concerned, they creak a bit but she said they were ok.
    I am probably being paranoid but since this is my 3rd visit in two weeks I got the feeling that I may be getting on her nerves.


    I am also going to get some help to try and get on top of my anxiety too. Because my last paragraph illustrates that I am not coping very well mentally.

    But, I feel, I have connected with some very special people on this forum and the generosity in your replies is inspiring and heart warming.

    THANK YOU, THANK YOU ,THANK YOU

    Louisa
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Well done on your steps to get on top of all this, Louisa. I'm sure it wasn't easy to pick up the phone and call the Helplines but you did and have discovered how helpful they are.

    Even harder, I suspect, you saw your GP and found out your other joints are basically OK.

    I doubt you're 'getting on her nerves'. I think your own diagnosis of mild paranoia is probably more apt. I'm suffering that too as I have to see my dentist yet again today :roll: There's a part of me that fears she probably thinks I'm a saddo who's addicted to dentistry :oops: :lol:

    Coping well with a long term illness or disease is not a skill we are born with. We learn as we go along. And we help each other. You'll be fine :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Time scales don't exist with this malarkey. Eveyone is different in how and at what rate their arthritis progresses.

    So, you've been thrice in two weeks? Trust me, that's nowt. This is her job, this is what she does for a living, she tries to help those who need her knowledge. OA comes under her remit, she may prescribe pain relief and possibly an anti-inflammatory, I take cocodamol 30/500 for the former and diclofenac for the latter (it eases the trouble I have with my ankles and Achilles tendonitis). I am much further down the arthritis road than you (and having a history of rubbish health I am far too used to taking things in my stride) but I can understand just how fretful you must be feeling. Your body doesn't let you down. Now it has. How very dare it. :(

    There are ten million or so arthritics in the UK and the majority of those have OA. I feel that this kinda counts against it because it is so common. People in their teens have it, it can begin at any time. I began my auto-immmune one aged 37, I don't know when the OA became a factor but I remember the plunge in my mood when I found out I had it which was April 2011. I was given an anti-depressant by my GP (her answer when I asked was 'About time.' I am still taking a small daily dose at the behest of my rheumatologist, her reasoning being that if I am stronger mentally I can cope better with the challenges of life. She's right.

    Somehow it's easier not to worry about the future when one is well. When you're not it suddenly seems very fraught and full of unknown dangers. It isn't, we adapt and change and just get on with things. Having said that I have to go now, I grated my right thumb last night and I've been patcehd up by a nurse. It's sore.

    Take care. DD
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, this is just to say I am thinking of you. DD
  • louisarm
    louisarm Member Posts: 52
    edited 30. Nov -1, 00:00
    Dear DD,

    Thanks for checking in on me. Had a good few days pain wise so fingers crossed it will last a bit longer. I hope you are well too.

    Kind regards

    Louisa
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Hello & welcome Louisa,

    It's good to read uve had a couple of good pain days, I'd bet that ure fear & anxiety levels fell a little too because of that?

    I think the shock of hearing ure diagnosis shook you up a great deal & for those of us that suffer with severe anxiety & in my case long term depression as well, often get lost in the 'wording' of the diagnosis. Everything takes on such meaning to us ... I only need a call from my practice saying the Dr wants to see me rather than a chat on the phone & my imagination runs riot ... It's exhausting :?

    I have been in counselling, thru my Drs, for a few months now. It's making such a massive difference :) It has been enlightening for me on a personal level but also as a wife & Mum ... I get very full of guilt & feel wot I'm thinking about myself must be wot my hubby & kids think too ... It turns out I'm a LOT harder on myself than they ever are, it's really nice to know :) SW advised communication & I can only agree, it's key! Ul always think the worst but I'm fairly sure ure husband won't but let HIM tell you that :)

    Oops, I haven't said ... I was diagnosed with severe chronic plaque psoriasis in 1995, in 07 my ankles swelled up & I was referred to a rheumatologist, i was diagnosed with Psoriatic arthritis & Osteo arthritis then 2 years later Fibromyalgia was added to the list. I'm now 43 years old. We have 4 adult children, 1 Grandson who is 3 & a total n utter joy & our 1st Grandaughter is due this November :)

    Do try & remember that arthritis is a part of you but in no way is it all of you!! The person you were is still who you are you just need to adjust how you approach things now. It's not the end ... I promise ((((hugs)))) x
  • louisarm
    louisarm Member Posts: 52
    edited 30. Nov -1, 00:00
    Dear Debbie,

    Thanks for your post. Still in shock and trying to adjust. But compared to what you and others have to put up with I should not moan.

    I wish you well.

    Louisa
  • yiayia3
    yiayia3 Member Posts: 19
    edited 30. Nov -1, 00:00
    Hi Louisa, your story is very much like mine, I ve just been told I need knee replacements bit scary but in a lot of pain at the moment so maybe for the best. I have polymyalgia and take steroids but nearly off them now,hope you get all the answers you need it seems to be a very good forum Regards Terri

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