What will they do?

It's been a while since I last posted so thought I would do an up date. I have been bed bound all this year, only with the exception of going to and from hospital by ambulance several times! I became bed bound back in January (2015) due to not being able to weight bare on my left knee. I had been told I had osteoarthritis, the pain had me screaming at one stage with any movement. I was not taken seriously by doctors at all, oh it's only a bit of knee pain they would say! So I incisted on having an MRI of my knee as I knew the pain was more. It took 3 months for them to agree and give me an MRI... The results showed I have only a tiny bit of cartilage left and my bones are grinding. This was 8 weeks ago.... I am still waiting to find out what the doctors are going to do with me!! Whilst being bed bound I developed multiple blood clots in both my lungs... Twice!! Almost died the first time, but thankfully now I am being treated with a it clotting injections (fragmin) at home... I self inject once a day. The doctors have already stated even before I had the MRI that they would not give me a new knee, if I needed one... See I am too young!? I am 44 and they said it would only last 10 years and I would need another. And the fact I am overweight, they will not operate too! They are reluctant to give me any pain relief by injections I to my knee as its too dangerous with the and clotting medication I am on. So I was wondering what was left!!?? See I don't want to be bed bound forever! It's driving me insane not being able to do anything... And from where I am sitting no one seems to care either!

16 Replies

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  • First of all, and without wanting to seem too blunt, you need to get out of bed and move about! My daughter has the same problem as you, as well as Ehlers Danloss, Lupus and osteoarthritis, she is 34 and suffered this since she was 7. Yet she works part-time and looks after her 5 year old son and husband!

    So my friend, you need to stop feeling sorry for yourself, get up, get moving and start yourself on a healthy eating plan to get rid of the weight (which will help!). My daughter is having her second knee surgery in 3 weeks time, this time to put a cushion in between the knee cap and stabilising it (part of the ED is that her knees dislocate too!)

    I know I sound harsh, but staying in bed will NOT help you. Gentle exercises will; ask about some from your doctor or ask to be referred to a physiotherapist. People manage every day with much worse than your problems (myself included) without taking to their beds, which is the worst thing anyone could ever do unless they are totally disabled/paralysed.

  • I am not feeling sorry for myself at all... Just fed up with this situation I am in. It's not like I have not tried to do things to help myself. I cannot stand for long as the pain is awful, I cannot sit for long in a chair as my coccyx is so painful. Putting any weight through my knee is excruciating and I do try... I get up to go to the loo... As for my weight... This is a long term thing that I have been battling with all my life. I have done every weight related thing you can do... I have been on every program the gp and doctors have asked me to do. I was on the program for weight loss surgery until January of this year when my knee got too much. They took me off the program as I cannot get about to go to any of the seminars and meetings. As for gentle excersise... I have had physio come to my home, they have said there is nothing they will do for me now as it's causing too much discomfort and pain. Exercises do nothing but cause pain... Yes my pain tolerance has increased, it's had to if I want to make it to the loo! I understand there are worse off people than me... I am supposed to be my husbands carer, he had a works accident 5 years ago and has a spinal condition now where he cannot straighten up or walk. Everyone is different and I am trying to cope the best I can, I don't want to be like this!!. I feel quite hurt by your post, I was only asking for a little support or advice...

  • I feel really sorry for you. It is awful to be in so much pain and feel left out in the cold by the very medical professionals who are supposed to help. This is a forum in which we all should support one another and as pain is subjective just because one course of action works for one person doesn't mean it will work for another. I am not medically trained nor do I suffer with this condition but if I could suggest a few things that may help. Firstly you sound very blue and down and pain affects all of us mentally. I am a strong person but even I have had moments were I feel life is not worth continuing. Please talk to your doctor about your emotions and perhaps try a medication for this. Secondly ask for a referral to a pain clinic. They have a specialised team of people who will work out pain relief drugs and have pain physios who will work within your capabilities. With the correct pain meds and maybe alternative treatments such as acupuncture and light physio exercises you will start to regain some control back into your life. Hopefully your mood will lift and then when you feel more positive you can address the weight issue if you feel ready. Whilst surgery may be the ultimate goal, the surgeons are correct as they don't want to replace the knees too young and leave you with no option later in life. Right now you need a team of people who will help your mood, manage your pain, get you moving a bit and ultimately regain the control you have lost. We are always here to help too. Xx

  • Thank you for taking the time to reply to me :)

    I have seen members of the pain team whilst in hospital, they had me on tramadol, gabapentin, oramorph all really high doses. I was on these for over 4 months and was still in a lot of pain. During my last hospital stay I decided to come off all the medications as they were depressing me, so now I manage with nothing. I would rather scream in pain than take all those drugs again. They have given me lidocaine patches that I put on my knee, they take away the dull deep ache but that's all. I cannot cope with taking all those meds... Another thing I should say is that I have SpLD's and these affect my day to day life... Co ordination, balance, and understanding processes. One thing that I am not coping with is when I have to speak to a doctor on the phone... I have to see someone to try to understand them when they are talking to me. I tend to get frustrated rather quickly and then my voice starts to shout ... I don't want to shout at them it just happens. This is something that even after trying to explain people just think I am being rude or agraessive and stop the call. I am coping the best I can, and unfortunately my family are having to step in more and more to explain me. In forums too, fb too I have problems interpreting what people actually mean... And getting everything out I want to say is a big problem. I made my post and the first person to coment on it totally misunderstood what I was asking or saying... I only post here for support not to go away feeling worse.

    I may come across as being low, I am not... I am a happy person and just do frustrated with not being able to do anything about my current situation. And frustrated that it's taking the doctors months to figure out what to do with me.

    My knee has caused nothing but bother for me, the multiple blood clots I had in both lungs have left so much scaring that I find it difficult to breathe when hobbling ... I do feel helpless and no matter how many times I ask for help no one listens. The only people that have and are trying to help are carers.org as I am a registered carer ... I need to be up and about, I need to walk... I am the only person in our home that keeps things together. My daughter (20) has a degenerative spinal condition and has a wheelchair for the days she cannot walk. My husband is also a wheelchair user as he has a spinal condition ... I looked after them!! You just could not make up our situation, we all try the best we can but it's clear we need support. Social services will not help as they say if we can feed and wash ourselves their hands are tied and cannot help. We kind of manage when my daughter is mobile... And that may only be 2 days out of 7! We live on quick meals as no one can stand or sit long enough in the kitchen to make anything! So believe me when I say I don't want to be bed bound... I try every day to do a little more, to push through the pain, to try to move about. I just can't, the pain and discomfort is just too much. It's not like I can talk to any one either... I have no friends, I had to give up work to care for my family over 5 years ago. So I talk in here... Thank you for listening.

  • I would definitely go back to the pain team. I am allergic to loads of drugs and they are trying lots of different types of pain relief. I had a lidocaine infusion yesterday which my own GP had never heard of. Drugs help to be pain free but there are other options. Ask for a referral.

  • Thank you...this is hopeful :). They have said they would not inject pain relief into my knee as its too dangerous with the anti clotting meds( injection) I am taking. The doctors are really reluctant to try anything... And things keep reacting with the injections too. I was given diclofenac suppository to help with my coccyx... But had to be rushed into hospital as it interfered with my anti clotting meds and I could not breathe. So now they are reluctant to give me anything and keep saying wait until I see the consultants at the hospital the ones that will help with my knee. Lol I keep asking for referrals.... I get no where!

  • I just think that you're making more of it than it actually is. If someone my daughters age, with the same problems and worse, can go to work, then you can get up and do things. How about a knee brace? She had one before her op and it helped. Slimming World is brilliant, eat loads and the weight drops off, I've done it and I have several friends who have, it helps if you do it with a friend for support. All I mean is, that no matter how much pain your knee is in, you can't give in, especially if you're someone else's carer. Maybe there's a little depression there too. I have spinal problems myself and I know how hard it is to deal with daily pain, but you do it to live as normally as possible.

    My reply wasn't to hurt, it was to make you see that it isn't the way to go about things.

  • You CLEARLY do NOT understand the situation I am in... NOT EVERYONE IS THE SAME!!! Great your daughters doing well... I am not!! I do not have to explain myself to you or anyone else. If you had bothered to read what I had put you would of read I have tried everything to lose weight... Again I do not have to justify my actions to you. Great good for you that slimming world works for you! It does not for me!! Oh but then your probably thinking I am not trying hard enough... That is all I do... Cry with the pain when I do move about. You don't live my life or understand one bit what I am going through. I have asked and asked for help with my knee to all the doctors, no one listens. It's great me seeing others get the help...seems like my family have to fight for any help. And seriously! Your comments have really upset me for the second time now... I posted in here for help and support, not for some do gooder to get on my case and tell me how good their family is doing and coping and that I should be the same. I AM ME, AND DOING THE BEST I CAN. If yOU don't like it... DONT COMMENT!!

  • Thanks for commenting... "In as much as I make out" .... Everything I have posted is true. I am dealing with the best I can. I can hobble around my home but just to the loo and back, I don't have the stamina due to my lungs being scared. Yes the blood clots were caused by my knee... But if I am screaming with just the slightest movement and taking all the maximum doses of pain relief and still in a horrendous amount of pain...what do you want from me? It seems a lot of people are doubting aphis much pain I am in... Then telling me in not so many words that I should just get on with things... Well I am trying, and everyday is a struggle. I did not come on this forum to be attacked or form one to tell me I should just get on with things. I come on because I have no support, I have no friends, I have no one else to talk to about this...silly me thought I would make a few friends and pick up some friendly advice. And once again... I AM NOT YOU SO WOULD NOT DO WHAT YOU WOULD DO IN THIS SITUATION!!!

  • It's people like you that stop people like me having the confidence to post in groups like this...

  • Keep your chin up and demand that referral to a pain clinic. You have a lot going on in your life and you can't keep going on like this. An expert in pain management is bound to help. I sincerely wish you all the best and please continue to post if you need support.

  • PLEASE DONT BOTHER TO COMMENT ON THIS POST ANY MORE.... SILLY ME THOUGHT I WOULD GET SOME FRIENDLY ADVICE. WHY IS IT THAT PEOPLE DO NOT BELIEVE ME? I JUST WANTED TO CHAT... I CANNOT COPE WITH PEOPLE THINKING I AM NOT HELPING MYSELF OR THAT THEY THINK I AM LIEING. I AM TRYING THEM BEST I CAN TO DEAL WITH THE SITUATION I AM IN... I AM NOT YOU, NOR WILL I PROBABLY ACT LIKE YOU....I AM ME!!

    I WILL NO LONGER POST ANYTHING AGAIN.

  • I can understand why/ how you became bed bound. and the coccyx thing makes everything worse. I have a knee prob but nothing as bad as yours some of my cartiledge is dead and some of my knee bone has died so I do understand your situation. Its a terrible situation you are in but somehow you must find a a little light at the end of the tunnel. My thoughts on this are: try the 2/5 diet. Sure you may have tried it before, but perhaps not given it long enough and not been careful enough on the other five days. My sister in law did really well on it but her will power is 90 percent better than mine. Plus she doesn't drink Alcohol And she did the 500 cal for 3 days a week instead of 2. When you are doing your shopping on line it will be easier to choose the right foods to suit the diet days. By doing and sticking to the diet, it will show your GP you are trying really hard to help yourself. You could also try the book "armchair" exercises . Can't remember where I got the little book from but you should be able to get it online. And being soft back and small the postage should be small. Obviously there will be some exercises you can't do. ( me too) .But I'm thinking it could be a way forward for you to have a plan and a goal in sight on one aspect of your health situation . Don't give up on people, we are all in pain on here .

  • I am so sorry to hear of your plight. You are young at age 44, however, there are newer knee replacements mechanics with 25-30 year lasting statistics. I received one at age 53. If your docs can address the root of the situation and relieve the excruciating pain of bone on bone knees, your other factors will at least have a chance to improve. My knee works great mechanically, however, the anesthesiologist nurse hit my femoral nerve when inserting a nerve block for post surgery pain. I highly recommend avoiding nerve blocks pushed for post pain management and use medications. That error has caused femoral nerve damage and CRPS type 2. Now any movement increases pain and escalates all of the CRPS symptoms. After 1 year, the CRPS had spread throughout entire body and is now starting to impact internal organs. If they want to do a nerve block, weigh out the risks, IMHO it is not worth the risk of being bedridden, in pain, for the majority of the rest of your life. You already know how mentally and physically depressing that can be.

    I hope you have a chance to look into the newer knee replacement mechanics that have a longer life expectancy (and you find a doctor experienced in using them for knee replacements), and are back on the road to recovery very soon. Best Wishes.

  • Dear Hidden

    No matter what you say or how you feel remember

    PAIN IS WHAT THE PERSON SAYS IT IS ,FEELING HOW THEY SAY IT DOES

    only you can judge how you feel and I know how awful it is to be doubted

    EVERYONE IS INDIVIDUAL AND OUR PAIN IS INDIVIDUAL TO US TO

    take care

    Love & hugs squeak xxx 🐷🐭

  • Dear Hidden,

    I have just read the trail of answers to your original posts. It really is not a bother for me to comment as I have spent all of my adult life trying to help people and provide support to those that need it.

    I only know how my pain affects me for every minute, hour and day of my life. I have gone from working to ill health retirement. I have gone from walking with a limp to walking with a stick and using a wheelchair. At the time of writing, my wife is recovering from a second stomach hernia operation so suddenly the tables are turned on the carer front. I am trying to do as much as I can and that is not much.

    For me, there seems to be a number of things that could be done to help you. Forgive me if they are already in place. Are Social Services involved in order to assess any adaptations that could be done to your home? For example, is there facility to fit hoists or grip bars to help you to get out of bed and then into a wheelchair? Is there the possibility of getting a stairlift? At least then you may be able to move freely indoors?

    Could Hydrotherapy be arranged? That way you could be transported to the pool, use a wheelchair and then hoist to get in. The warm water will support you and feels great (I found it worked well).

    Just a few ideas for you to consider.

    I wish you the best of luck and hope that you situation improves.

    Best wishes.

    Dave

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