Hello, please help I'm really struggling!!

JulieDadd
JulieDadd Member Posts: 6
edited 2. Dec 2018, 09:30 in Say Hello Archive
Hi, I'm a 48 year old female who has just spent the last 8 years fighting breast cancer. All my body hurts terribly. I have never been in so much pain! It's in all the joints in my feet, knees, elbows, hips. I've had my knees xrayed and I have moderate in my left and severe in my right. I take a lot of medication anyway for the cancer etc but the painkillers I take don't really seem to be doing anything. I take naproxen, nefapam and 30/500 cocodamol. Maximum doses of all 3. I am in pain constantly there is no let up. The worse pain is in my right knee particularly while driving (I cry every time I get in the car) and also when I am in bed at night. I have a high pain threshold and just get on with things. I had 2 children with no pain relief. I've had a mastectomy, chemotherapy and 10 or more other operations. My doctor has said that she wants to give me a cortisone injection, but I will need a new knee, so I have now been referred to a specialist. I keep wishing its all been a bad dream but I wake up in a morning and think 'oh no not again, here we go'. I just need advice as to anything I can do to help myself, I'm only 48 and it's starting to get me down and I feel like my life is ending at this young age. I walk around like somebody 50 years older. Please help.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi JulieDadd and welcome to the Versus Arthritis forums.

    I'm so sorry to hear of your long-term diagnosis of breast cancer and the severe pain you are experiencing.

    Let me say straight away that if you need to talk to someone in complete confidence then please do contact our free-to-call
    Helplines on 0800 5200 520 Monday–Friday, 9am–8pm or you can email them at [email protected]

    To take just one part of your post, having knee-replacement surgery is now a common operation (one of our moderators is awaiting a second one) and the difference can be pretty amazing once that particular pain is relieved.

    Coping with everything under such conditions as you describe can be extremely difficult. I hope that some of the sections on the "Managing Your Symptoms" part of the website might be of some help:

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/

    I'm sure other forum members will post their suggestions. I do hope you will keep returning to let us know how you get on and to ask for all the support and help that you need.

    Best wishes
    Brynmor
  • JulieDadd
    JulieDadd Member Posts: 6
    edited 30. Nov -1, 00:00
    Good morning, not had much sleep at all last night been in a lot of pain in my right hip and knee. My knees both lock terrible so moving them to a better position is really painful. I do put a pillow between my knees and this sometimes eases things a little. Got junior football this morning so I need to make sure I keep moving. Hope I get some halpful advice from some of you later
  • nedley
    nedley Member Posts: 3
    edited 30. Nov -1, 00:00
    JulieDadd wrote:
    Hi, I'm a 48 year old female who has just spent the last 8 years fighting breast cancer. All my body hurts terribly. I have never been in so much pain! It's in all the joints in my feet, knees, elbows, hips. I've had my knees xrayed and I have moderate in my left and severe in my right. I take a lot of medication anyway for the cancer etc but the painkillers I take don't really seem to be doing anything. I take naproxen, nefapam and 30/500 cocodamol. Maximum doses of all 3. I am in pain constantly there is no let up. The worse pain is in my right knee particularly while driving (I cry every time I get in the car) and also when I am in bed at night. I have a high pain threshold and just get on with things. I had 2 children with no pain relief. I've had a mastectomy, chemotherapy and 10 or more other operations. My doctor has said that she wants to give me a cortisone injection, but I will need a new knee, so I have now been referred to a specialist. I keep wishing its all been a bad dream but I wake up in a morning and think 'oh no not again, here we go'. I just need advice as to anything I can do to help myself, I'm only 48 and it's starting to get me down and I feel like my life is ending at this young age. I walk around like somebody 50 years older. Please help.

    Hi Julie,

    Sorry to hear your story. You really have been through it.

    Do you spend anytime in the swimming pool at all?

    Ned.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am so sorry: I am exactly the same as you but without the cancer, my daemons are psoriatic and osteo arthritis plus fibromyalgia, the first arthritis began when I was 37, the second was diagnosed when I was 52 and I am now 59. It certainly wears one down and I know some eighty year olds who can still do all the things I no longer can and have far more energy. That is their lot in life, I have mine and it does me no good wishing to be different. My affected joints are my toes, both ankles, both knees, both hips, fingers, wrists, elbows, one shoulder. Other things protecs from time to time, either arthritis or ageing: I care not which.

    I don't know if you use any walking aids, I have a rollator for when I go into town which helps me go further, do more and because it has a seat I can rest when needed. I used to use crutches too but I have given those up - I worked for a while with a personal tutor and she restored my confidence in my ability to walk unaided - it is so much easier to think 'I can't' rather then 'I can' especially when the can causes more pain. It is important for us to keep our muscles as strong and flexible as possible to better support the joints, this will also be a plus for you if you are put forward for replacement surgery. I was refused new knees aged 52 due to youth but given the circumstances I don't think that will be an issue for you.

    Pain relief isn't, is it? All it manages to do is dull the sharper edges of the dross. The stronger the pain relief the greater the dulling until one is taken away from the pain rather than the pain being removed: my favourite form of pain relief is general anaesthetic but it's not a useful one. I have learned to prefer to be hurting and alert, I value being able to drive, hold a conversation, complete a task etc. rather than sitting in a doped lump on the sofa. I have learned to find the feedback from my joints useful as it tells me when to stop and have a breather (that's when I usually come on here). Life became easier to manage once I had lost the nuisance of being pain-free in some places, that stopped the comparison: when it all hurts you know where you are. If someone offered me a pain-free day I would turn it down. I have 30/500 Cocos and keep to four a day, that dulls enough for me to get by. I never found nap useful as pain relief because it never did that but now, as my auto-immune arthritis is under control inflammation, inflammation from that arthritis is not an issue: inflammation from OA is localised, my own fault, and easily dealt with. My main 'weapon' against my pain is distraction: if I am not thinking about it it decreases.

    I know very little about cancer but I know my arthritic onions. If you have the right kind of the former then a cure is possible but with the latter that is not an issue. There is no getting better with many kinds of arthritis but, if one only has OA and in the right kind of places, new joints can make a huge difference to the quality of life. I am so sorry you find yourself part of our world, for me it's no big deal as it was always on the genetic cards but for you? It's further proof that the world is not a fair or just place. DD
  • wazz42
    wazz42 Member Posts: 233
    edited 30. Nov -1, 00:00
    Hi Julie,

    Congratulations on being courageous - successfully battling with cancer. You are right you can tolerate high levels of pain - you do all the time but now you need extra help. Nothing wrong with that, you are stretched to the limit, you have another condition demanding attention and it’s awful.

    As our DreamDaisy said in another thread crying is good, it’s therapeutic and a release of tension.

    There are other pain meds out there, I can’t say how they might react with whatever you are already taking, but I would ask your GP for help, some are in patches and slow release, some tablets and slow release and so on. You can also ask for a referral to a pain clinic. I’ve been and it was a great help, they sorted my meds, I needed to sleep at night, can cope with most things then so I took extra then, used an electric blanket and it is bliss now to lie down. I do muscle relaxation and do get a good rest.

    Why not try the injection? It doesn’t preclude a knee replacement but it might give you relief while you are waiting.

    You could try using a walking stick/s. I started using one at a younger age than you and it does help.

    Posting here helps to. We can’t take away the pain but we can walk alongside you and very gently hold your hand when it’s tough

    Take care
    Wazz x
  • JulieDadd
    JulieDadd Member Posts: 6
    edited 30. Nov -1, 00:00
    Thank you everybody for your responses. I have just read them all and sobbed and sobbed. I don't feel sorry for myself or think why me, cause why not me. I'm no different to anybody else. I just think everything is getting on top of me at the moment.
    I got some kind of insect bite on my finger last week as well and you should see the state of that. All my finger is weeping and my hand is swollen. Waiting to see a doctor about that too.
    Once I've had this big cry I should be able to dust myself down, pick myself up and start over again with positive stuff.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    If you are immuno-suppressed then things like insect bites can take a while to heal (I apologise in advance if I get anything wrong, I've had a rough week and my ability to absorb information is reduced; my husband would tell you it's not that good to start with :wink: ). However, if it is swollen and weeping then that smacks of infection and you should seek medical advice ASAP.

    I think it does us good every now and then to stop being cheerful and positive and allow the supposedly negative emotions to show more, it is very hard to be upbeat all the time and un-necessary. 'The more sorrow carves into your being the more joy you can contain' is one of my favourite quotes, along with 'Never try to teach a pig to sing. It wastes your time and annoys the pig.' Utterly pointless that one but it makes me laugh.

    It doesn't matter what the cause of pain, we get it because we're in it. DD

    PS. Hello wazz! it's nice to see your name on here, how's things?
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Hello and a belated welcome from me too.

    I've had RA since I was 15 and I had breast cancer at about 48. I was one of the lucky ones. I had my mastectomy and chemo (couldn't have radiotherapy as my shoulder wouldn't move out of the way :lol: ) and that was that. I've not had a recurrence and it was about 20 years ago.

    The problem with 'painkillers' (Oh no they don't :wink: ) is that our bodies get used to them so they become less effective. If you have the chance of both cortisone injection and new knee I'd go for it. The injection might not work. They're always a bit hit and miss. But I had new knees years ago and I don't know how I'd have managed without them. My sons were about 11 and 8 at the time.

    How is your hand now? As DD says, infections which would be minor to others can become quite major with us. If in doubt see if you need antibiotics.

    Please let us know how you're getting on.
  • JulieDadd
    JulieDadd Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi everybody, well after feeling so, so low and not seeing a light at the end of the tunnel, because of the immense pain I have been in for a few months now. I finally feel on top of the world!!! My pain has gone from immense to bearable and I can do things now that I haven't done for a while. On Friday I was at the doctors for a cortisone injection and so far I am absolutely blown away by the result. Its like a chuffing miracle. I feel like I have been given a new lease of life after so much agonising pain. Onwards and upwards now. Thanks for all your support xxxxx
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    I'm so pleased that things are better for you. Just a small respite can help enormously. Now, I'd hate to be a killjoy but just a word of caution about the jab. It won't last so please don't expect it to and then be horribly disappointed. I usually get about 2 months from them and we are limited in how many we can have. But, for you, for now, it's working so enjoy it while it lasts :D

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