Crps and severe osteoarthritis at 35yrs old

crazylegssadie

Help I'm 35 years old I've had osteoarthritis in left knee since 19years old after multiple operations and drs thinking it was cartilage I was having a problem with they found I had this rare abnormal bone disorder in knee called trochlear dysplasia where your knee would dislocate with no warning ,I had too go too norwhich university hospital too have a pioneer op too fix trochlear dysplasia there was only one Dr in the country too fix it at the time and it worked great for 7 years it was long recovery had too learn too walk again and had a machine working my leg for a couple of days. Then one day doing my normal active work day and I was stopped in tracks with the most painful thing ever, couldn't walk knee swelled up and felt it was going too split knee open, I was up hospital so many times the swelling was pushing on my sciatica nerve as well, Dr's couldn't do anything I had morphine went through a whole bottle of gas and air, parcetamol drip and codeine nothing was working for two years was like this so many drs so many medication then I was sent up too see a Dr in Dartford who was great listening too me he did mri and said my knee is a right mess,I had bursitis sacs all round knee, cartilage hanging by string severe osteoarthritis in knee and now have it in femur, I had also had septic arthritis a couple of years ago and damage from that,He said he had never dealt with my knee problems before meaning trochlear dysplasia so he said he will send me up too London too a knee specialist but in meantime do a steroid injection in knee, He did injection and we went off on our way as I got in car noticed knee was stiff too get in then 15 minutes down the road I was in so much pain didn't feel well leg was warm by time got home I was crying couldn't get out car was like that all night then phoned Dr in morning and they said right here's some morphine and antibiotics wait five days see how you get on still felt rough and I found out he had pierced one of bursitis sacs which gave me sepsis, I went too london too see the knee specialist and he said because I've had sepsis twice and he thinks I've got crps there's no way he will give me a total knee replacement that totally devastated me, I was sent too pain Dr who diagnosed me with CRPS and a pain Occupational therapist too help me cope, and I still see knee orthapedic in Dartford, the surgeon all he says is my age is a plus side there might be a cure how can you say that my life was tipped upside down it was horrible I was in a very dark place but I got myself out of it, I know now what too do when have flare ups how too take it easy not do too much I mediate, essential oils, listen too loud music in earphones of favorite songs so I sing try too block out pain, Don't get me wrong the flare ups are crazy especially trying too deal with a arthritis flare up the pain triggers a crps flare up and my body can't handle the pain so I start being violently sick but almost feel better after being sick it's weird, I've had a particularly hard time at moment knee has been bad for two weeks Dr had too come out and give me an injection and more tablets and I haven't been outside house in two weeks, Think cartilage has gone knee keeps trying too give way so dr has sent of for an mri too be done, I have now ibs from crps,I'm on lidocaine patches for crps and morphine and paracetamol and methocarbamol and naproxen for arthritis, I see the knee surgeon again at end of month they have said to me too you smoke(no) do you drink(no) cut out dairy well I have too because I have too be gluten and dairy free due too ibs then last visit he said cut out sugar because inflammation so I have done that let's see what he comes up with next stop eating lol, I always think of positive when have a bad time like this is what I'm going too do when I have a good day reading, swimming, pottering round garden or go too beach and listen too the waves it's so peaceful. I just want too let me know in my same position you can have some sort of a life and positive one I know CRPS is nicknamed the suicide disease and I understand why but we won't let it beat us.

phoenixoxo

Hi Sadie,

Welcome to the forum 🙂

I'm sorry I can't be of much help, but I just thought I'd say hello and send some positive vibes your way. You've clearly been through a lot, and you're still going through it, but you've developed some really good coping strategies. I listen to music too, and I enjoy visiting the local park when I'm well enough. Best of luck for your appointment at the end of the month 🍀

Best wishes,

Phee

crazylegssadie

Hello phee ☺
Thankyou for the well wishes.It's the little things that help the most.
Sadie x

phoenixoxo

You're welcome, Sadie 🙂

Yes, the little things are everything 😊

Best wishes,

Phee x

dreamdaisy

Hello, I have heard of CRPS (chronic regional pain syndrome) and count myself lucky that my pain is everywhere rather than concentrated. Some have extremely efficient neural pathways which are very easily triggered and I reckon you must be in that camp, pain is meant to be an alarm and alarms are meant to be turned off but I know that is never going to be an option which kinda helps me get on with things. I am, however, nowhere near as bad as you (I have psoriatic plus osteo arthritis and fibromyalgia).

I went to a pain clinic which was not a useful experience as they told me to do what I was already doing. Pain is not understood by those who are not in it, some deal with it better than others but we all struggle with it. My first arthritis began in one knee and I have used crutches for many years, now I use a rollator as all my foot and leg joints are affected. What aids have you tried? DD

crazylegssadie

Hello dream daisy,
OMG all through your body that's not good the weather has probaly been a nightmare for you, It's a night mare when you have other illness as well I've heard about fibromyalgia and psoriatic you are going through it, in a weird way I don't feel so alone after finding this site and burningnights website it can be a lonely world even though you have your family they are healthy and fit they don't know what it feels like no disrespect too them,I have a stick called gutter crutch it's amazing helped my stability and walking so much but I think I need another one when go at end of month too hospital I'll look like a robot, I got so many stares when on crutches and I thought have you never seen anyone with crutches before it did use too bring me down but with my gutter crutch I don't mind them staring because you don't see them around I've seen one in person with one and one on TV, but it gives me confidence I would ask and see if you can get one but it's either from occupational therapist if you have one or physiotherapist or they do them online, my other crutches were pushing on my wrists and making my carpal tunnel syndrome worse so I wasn't going out it was too painful and if I fell my arms got trapped and made fall worse instead of me using my hands too land on, I also have a wheelchair but go out in that in worse times the way people look at you it makes me so upset, I have been very lucky with my pain Dr and pain occupational therapist even though we have too travel an hour too them, But really most drs just told me there's no cure we just have too manage the pain,You can always go back too your drs and ask too see another pain Dr if you was not happy with the one they referred you too, don't get me wrong I try too stay positive and I pick up pretty quickly but God when it's bad I wish they just chop it off most crps suffers have had it done but because I've had sepsis twice in it they said no, Thankyou for the kind words, The drs have told me due too how much trauma I had done too the knee and for so long thats why I have Crps, The way they described is that my peripheral nerve is damaged and instead of your pain switch coming on when you hurt yourself and going off when healed my is malfunctioned and stuck so I'm in pain all the time just depends how much normally like a headache pain on a bad flare up day it's like someone is smashing a hammer on my knee, all my energy and stuff that helps you too protect from illnesses or protect your organs go too my knee so I have no immune system, I'm m violently sick when pain is too much, Chronic fatigue and I have the same symptoms as MS, autoimmune disease and fibromyalgia and then when an arthritis flares up it starts the crps of so can't win at the moment I think crps has spread too ankle and foot I already walk on side of foot due too stability and I have trochlear dysplasia in my other knee at the moment they said my patella is slightly displaced they can't do anything till it fully dislocates because then it tears tendons and cartilage I already have arthritis started in that too what trochlear dysplasia is I have no groove where your kneecap goes when you walk or stand straight so my kneecap goes over the knee and wears the kneecap away from bashing and that's why I have arthritis in it what they do once it fully dislocates is do a trochleoplasty which they cut out a groove in the bone in my knee for my kneecap too sit it's an intense operation and four year recovery have too learn too walk again, and at the moment my good knee has tendonitis its so painful but resting on sofa today, I truly believe everyone deals with pain differently not one person is the same but don't let people push you about or make you think your not in pain as much as they tell you I would go back too your drs too get a second opinion by a pain Dr, I'm here if you need anyone too chat too anytime.
Sadie x

dreamdaisy

I have never been bothered by wondering if people are looking at me. So what? I reckon, judging by the way people allow doors to slam in my face, are happy to walk past while I hold open a door, swerve past me as their 'phone sense kicks in as I stand stock still (oh the temptation to crash into them is often very strong but no doubt I would be blamed as I have brakes) all lead me to believe that I am not the object of fascination I might like to think I should be.

Pain can be frightening and isolating but at least I know why I have it. With having a progressive and degenerative disease I know it is never going to go or diminish to any great extent which is no comfort but at least it's predictable. My parents dodged the genetic bullets they happily fired into me, my Ma used to feel very guilty but I told her not to bother with that because she got what she wanted and that should make her happy. I am 60, know my devils, know I am capable of living with them and will nevergive them the satisfaction of beating me into submission. I am more than my disease, always have been, always will. Arthritis may have changed how Iive my life but it has not been allowed to change what I get from it. DD

crazylegssadie

😂 I wish I had the confidence, I love the way you deal with it all.

dreamdaisy

Believe me that confidence has been hard-earned and hard-learned. I knew very early on that, in the great scheme of things, I was and remain totally insignificant, even irrelevant and ageing has done nothing to change that view but I do remember, when younger, being worried about what people might think about my appearance etc. I was always the outsider looking in but someone has to be that person because that person is always there.

I know I made a tangible difference to people's lives with my work (I tutored dyslexics) and I try to do the same today by being cheerful, complimenting people on their clothes, jewellery, scent, hair style etc. to show that have noticed them as an individual, not just background to what I am doing. Receiving the smiles I get in return is a wonderful gift. I prefer to be memorable for better reasons than being a moany, grumpy old bag. Yes, I have those days too and bore myself within ten minutes. As a friend of mine says 'Vot is point?' Yes, I have a lot to be grumpy about but why make life harder by grumping? I find it takes too much of my precious energy. DD

dreamdaisy

Hello, how are you doing today? DD

crazylegssadie

Hello,
Hope your doing OK, And your looking after yourself with what's going on at the moment and I hope you have friends and family that can make sure you have everything you need, Sorry didn't reply we had too go too Dr's my knee was painful too walk on and there was swelling at front and back of knee and I generally felt unwell, I couldn't cope with pain no more, The dr said I had a bakers cyst and it was due too so much fluid at front its pushed too the back he said it's going too be very painful and something Is seriously wrong inside of it, rest for a week and take these anti inflammatorys he said the reason I felt unwell was because the fluid and have swelling on ankle and foot, he said I should have an mri date through the door soon, I did when I got home but it's not till middle of April but with everything going on that's understandable, He then checked me for coravirus symptoms and said all good but you need too self isolate because of your immune system Crps takes away all the good things helping your immune system too fight against it, So he gave me a flu jab thereand then and so I am on third day in bed, I have been out three times in nearly four weeks and one of them was drs 😂 I like too enjoy my days out, enough ranting aprt from all that doing OK finished a puzzle did a little bit of painting (not house painting hobby painting) and done some wordsearches, Hope you doing OK and your not in too much pain. X

dreamdaisy

Hello, many apologies for not responding sooner but I have been rather overtaken by events both within and without my control. This is a place populated by poorly people so it happens.

How are you coping with the current situation? For me it's no big deal as I am used to being confined but I have to admit it is easier when necessary due to arthritis, not because of a virus. I am starting a new project, I enjoy die cutting and found a Sizzix bigz die cheap on the web: it's a sleigh, a 3D model so that is my Christmas card for my neighbours sorted, one sleigh per household, complete with sweeties. I am also making other cards to sell once this is all over and free ones for neighbours who suddenly need a card but can't go out to buy one. DD