End of the road or is it....

Stayfocused

Hi everyone,
Sorry I've not posted for a while been at a bit of a loss. Trying to just get on with my life but deep down really struggling with pain. I struggled on untill about two weeks ago when I couldn't get out of bed I was in that much pain. I just sat and cried and admitted defeat, my ole faithful black lab came and sat next to me as she so often does when I cry.
Ive recently moved my care to another trust as I wasn't happy about my management and evidently I was right to do so. I have had this pain in my hip since January 2011 and it has taken me moving to another trust to actually get something done about it.
To cut a very long story short I had my 3rd steroid injection into my right hip on Tuesday of last week and rested solid for 3 days post injection. The two previous injections were depo's which didn't work.
I cannot fault my current consultant and nursing team they are the best. However 6 days post injection I'm still in pain, not as bad in fact nowhere near as bad but it's still not right.
There is a few of reasons why I wrote this post...
The first being will this pain ever go away to a level where I can function and go back to work without being in agony and just making do of a bad situation or is this it will I forever have this pain and instability in my hip
The other reason is, I've had MRI, X-rays and nothing shows up on them (however the MRI was before this really big flare up). Is it in my mind...it certainly doesn't feel this way when I'm in agony, but the mind can play some amazing tricks.
And my third and perhaps most vital reason is...I work as a nurse in quite a senior position, I love my job even though it is stressful and hard work. I have good days and bad days like everyone. I manage at work to varying degrees...somedays I'm really good and I'm a super nurse and other days I might well as not be there due to the amount of pain I'm in.
I have had time off work over the 10 years I've been there but work have been really supportive. But I worry that due to my sickness record and the way the NHS is at the moment that one day they'll just get rid of me. I know they can't just get rid of me, I'll be redeployed to another area of the trust but I've worked hard to get where I am in nursing now and I can't just let go of a dream and something I love doing.
If I end up losing my job I'll lose everything my house, my car and the will to carry on.
What do I do carry on untill I can't function or walk and end up in a wheelchair. Or admit defeat and throw the towel in.

One last question...does anyone else manage arthritis alone?? I have a very supportive family...mum, dad and sisters but I'm recently divorced and have no friends. When I was married I spent ecery waking moment with my husband and when he went to work I eons clean the house and await his return. I wouldn't go out with my friends as I'd rather spend time with my husband. Big mistake, I've lost my friends and am never asked to go out with them anymore which in some ways is good cause I'd probably be too tired or in too much pain to go out but it'd be nice to have the opportunity. Since my husband left I moved to another county and although I'm near my family I have nothing else and no one else to spend time with. I am alone and at 34 this is not the way I imaginedy life would be.

Any comments would be really appreciated, so at least for today I don't feel so alone x

elnafinn

Hi there, I have just replied to your thread on the working matters zone.

Elna x

desjumeaux

Hi Elnafin,

I think I understand how you feel. Today I am in terrible pain, and can hardly walk, two weeks ago I was crying just trying to get out of bed. But then there are days that I feel pretty good.

I have a different problem, and that is: my husband wont let me do anything and even likes to drive me everywhere. Problem is he doesn't do things how or when I want them done. We have a lovely house with lots of space and he wants to sell up to buy a bungalow. I would be very sad to leave this house.

I too go everywhere with my husband, but at times I just want to go somewhere alone and have a bit of independence. I too had a very good job, which involved a lot of travelling around the county and I loved it, with lots of responsibility. Now I am in trouble if I get the vacuum out while he is walking the dog.

I sometimes think it is all in my mind, I cant't believe that I am in such pain and struggling to walk. Its only a couple of years since I was walking miles up and down hills. Just can't believe this has happened.

I enjoy the company of my sister when she comes up to see us, we have a laugh and a glass or two. Its good to relax with someone who isn't watching your every move.

I think I have gone on a bit too much about my problems, but I do understand how you feel. I do hope you start to feel better soon.

Its a shame we cant all get together just for a good natter and perhaps a bottle of the vino.

elnafinn

Hi Dejumeaux

I believe that your message is for Stayfocused.

I am sorry that you too are in terrible pain. As you say, it would be so good to all be able to have little drinkies or a cuppa and chat together wouldn't it? We shall have to go for second best and chat on here.

Look after yourself,

Elna x

stickywicket

No wonder you haven’t been around, Stayfocused. You’ve had a tough time of things and sometimes life brings enough stuff to deal with without forums etc. Divorce is a big upheaval and so is moving house. All this stress takes its toll on our emotions and also, unfortunately, on our joints.

I can’t offer any advice on the work front but I’m glad you have a new trust, a new care plan and things happening which will, hopefully, ease your pain although there’s never a guarantee with the jabs. When you say ‘It’s still not right’, I’m not sure how ‘right’ you were hoping it would be. It’s clear, reading on, that you’re hoping to be able to work, despite the pain and that’s a possibility but, as I’m sure you know, everyone is different, people experience pain levels differently and, if your job demands a lot of your hips, it will, likely, be a tough call. Joints don’t improve though the pain may be lessened and the deterioration slowed down. At the end of the day, the only ‘cure’ is a THR. As the proud owner of two, I would certainly recommend them but that’s probably some way down the line yet for you. As for a wheelchair – I don’t think that would even come into question for ages, at least. After 50 odd years of arthritis, I still only use one for longer journeys.

I don’t think you’ve lost much with the friends who have written you off but it might be good to look for new ones. You don’t have to go clubbing together or bungee jumping. A nice meal out that you didn’t have to cook, a visit to a theatre or cinema or just a bottle of wine and some nibbles outside now that we have a bit of sunshine – all of these things make life a bit easier and more fun and help to take one’s mind off painful joints.

skezier

Hi Stayfocused,

Good name by the way.

I so symaphise with you re the pain but I am lucky now with the aid of the pregabalin and oxycotins and oxynorms as top up the pain is manageable and maybe that's what you need to try and get... a pain management plan that works for you is good to have.

You asked if anyone does it alone.. I do, live alone and nobody close by and in a way it helps as you have to do things yourself. I don't know if that helps to know it can be done alone?

I also can't offer any help er the work front but I do hope that will get easier and maybe you can get lighter duties for a min there? Its al so hard isn't it and often scary and I wish I knew what to say to help.

Pain is evil but its not in your head! Its very real and I hope the jab will help and they find out from the mri what's going on for you. It could be a flare causes the inflammation of the fluid in the joint and that does really hurt as it can';t go anywhere and it presses on all kind of soft tissue things so the fact that the tests showed nothing doesn't mean its not there.

You hang in there and just know that the folk here underhand and are there for you. Cris x

Hi Dejumeaux like Elna I am sorry your in pain as well. I really wish the gp's and consultants would understand how much it all hurts and how much pain can get you down. hang in there and I hope it will ease for you too x

barbara12

Hi
I am so glad that our Cris an answered, she was the one I was thinking abut when I read your post,I really do wish I could help more, but please dont forget we are always here if you need to get it all out.
Just a point could you not join a groups of some kind, I know its easier said then done, but its a way of meeting people, I did join a lovely painting group last year,I felt so good meeting and making new friends.
Sending you loads of hugs (((((()))) xxx
And here's some for Dejumeaux ((((()))) xxx

desjumeaux

Sorry Stayfocused, for getting your name wrong, I am having a bad day today.

Its true what they say on here, you get so much support and help its a great website.

Sending hugs and wishes, to all

xx

7worlds

Hi Stayfocused, I read your post and had to reply. The awful pain of arthritis can make you feel very alone and it can also make you think that your loosing your mind sometimes but you will find a way to get through it. Like yourself, i work full time in a demanding job both mentally and physically but im also a manager so i know how it works, and believe me you cant just get rid of someone. There are laws to protect you. I was also in a marriage that ended in a way that i didnt see coming and i was devestated, but im now very happily married again with a wonderful family and im not much older than yourself. What im trying to say is that we may always have to deal with the pain to some degree but wonderful things can happen in life when we dont expect them and that can make the bad things just that little bit easier. I have no doubt those good things will find you.

Thinking of you

7worlds

applerose

I'm another one living on my own and I too sometimes wonder if it is all in my head. I have family not too far away but don't see much of friends. I think maybe it's right that it helps that we have to do everything ourselves. It's best to keep moving as much as possible. I hope the injections are helping.

bubbadog

Hey Stayfocused, I'm alone between the hours of 8am - 5.30pm except for my next door neighbour doing me some lunch. So I know alittle bout being alone except for the bubba (puss) who himself isn't to well at the moment! But I wanted to say is your not alone ! You have everyone on this site behind you and willing to chat to you and help you through this hard time. When you joined this site you made (wouldn't like to guess how many members!) a load of new friends! We're like the 3 muskcateers (but in thousands!) all for one and one for all! That's why I love this site and need my fix everyday or I go made! To see how everyones doing, and the ones who are having a bad time send them supportive messages, like I am to you. So never feel alone, feel the love of this site behind you. And if you ever need to talk you are more than welcome to PM me (private message) anytime. Take care and I'm sending you a big supportive ((((HUG))))

tkachev

I know its not easy when unwell but I was 34 when divorced and like you had lost touch with friends. My husband and I ran a company so I was divorced from my job too and lost my lovely home!

I cannot say it was easy and R.A had not struck me down in those days but I had to start afresh and I didn't think I could do it but I was suddenly free to make my own decisions and I enjoyed that freedom.

Nowadays we have facebook and forums and I have made many cyber friends. There are specific pages for arthritis sufferers on facebook and we all support each other and can never feel alone.

I hope you feel better for posting and sure you will join in the forum here and get the support you need.

Elizabeth

desjumeaux

Hi tkachev, you have put that really well. I was divorced and lost all my friends. I married again and moved abroad so all my friends are mainly in France.

My sister lives 2hours away and my daughter 3 hours away. I would love to be able to walk round to their houses for a chat whenever I wanted.

It is hard but you are right there are lots of things to do on line and this site is really helpful.

Which facebook forum are you on for arthritis, I cant find one in the UK ?

xx

Stayfocused

Hi everyone,
7 days post injection and I am feeling slight improvement especially yesterday and today. Hopefully onwards and upwards. I saw podiatry today and had a good chat that was reassuring and he explained why I'm getting pain in my feet and knees, because of the pain in my hip i am copensating a lot which is affecting my right knee and foot and other muscle groups in my right leg which have took over the normal muscle group due to them being injured at present. (hope that makes sense). But he gave me insoles and some exercises to do to improve the pain and strengthen my muscles. I will see him again in 4 weeks. I also have an Msk appointment on Thursday for a post injection check up.
I can't believe I've spent yet another week of my yearly holiday allowance being in severe pain. So much for a break from the norm hey!!! :P

bubbadog

Hey there stayfocused, it's so hard trying to explain to someone who isn't going through the same pain or stress as yourself. They don't understand. Sometimes it feels like an up hill battle. It's not worth trying too hard. This site is one of the only sites where you can talk and people truely understand. I find when talking to consultants or G.P or OH, family or friends it's easier to talk to them in simple terms and explaining the pain by saying it's like....and explaining the sort of pain it would feel like to them. And then they get a picture of how I feel. I hope that makes you feel alittle better and remember we're all here if you want to chat to someone or just let off steam.

dreamdaisy

Hello, how are things today? I hope you are OK. DD

Stayfocused

Hi everyone,
Thanks again for all of your lovely words and support.
I'm slowly slowly getting better. Still on crutches and still off sick, morning tv is rapidly depressing me so I've started doing my painting again until my fingers hurt that is.

I wish my dog could talk to me and tell me how she is feeling. She just looks at me and grabs the first toy she finds, itry to play with her but no where near as rough as she'd like me too. She's a black lab and although she is 9 she's still very very good good for her age and I don't think she'll ever calm down.

Speak soon xx

desjumeaux

Stayfocused, So pleased you are feeling better.

I bought a black lab 6 years ago, and he turned out to be a French Berger X who knows, there is a link to his story on my web blog.

He is fabulous love him to bits, sadly I cant take him out as much as I cant walk too far, so its left up to my hubby.

If you cant find the link on my profile try this one


http://adogcalledben.blogspot.co.uk/

do hope you enjoy it

xxx

mates

Hi There,

Your initial post on this thread sounded so familiar to my hip story that I felt that I must post and give you real hope.

I have had pain throughout my adult life which was diagnosed as sciatica around 20 years ago. I gave up getting asking for more help and coped. In my early forties my hips deteriorated dramatically. After a few years of xrays and seeing a couple of consultants I had a diagnosis in one hip - Cam and Pincer impingements which is now believed to be a major trigger for hip arthritis in young adults. My other hip however was different. the pain was not in the classic pattern - it was severe and unrelenting when it triggered and I was very disabled by it. I couldn't stand or sit or even lie on my back and had to lie on one side not moving the hip at all for days on end until the pain reduced. Day to day living was nightmarish.

I saw a surgeon in Cornwall (several hours from where I live) who specialised in hip impingements and yes I had them in this hip too. In 2009 I had an Open debridement on this more severe hip. It was better for a time but I had severe scarring and inflammation so had an arthroscopy a year later. This didn't help and by this time I couldn't turn my hip outwards at all so walking and general moving around became very difficult. My surgeon was not certain what was going on but it seemed to be that the structural issues in my hip were triggering issues outside of the hip which were never going to get better because I had such poor movement in my hip joint. Last year he replaced the hip and the pain has gone. I can walk as far as I like on this hip and I have my life back.

Here is a link to the website which gives you all sorts of information on hip conditions: http://web.me.com/nortonsincornwall/Cornwall_Hip_Foundation/Home.html

I would strongly recommend that you see a hip surgeon who specialises in hip condiitons in younger patients. Mr O'Hara in Birmingham is highly recommended as is Mr Witt in London. The Cornwall Hip Foundation treats people from all over the country and I was referred there via my GP and Choose and Book. Your consultant can also refer you there or any of the other surgeons. I hated being so pushy and it was several years of hell getting my hip sorted but it changed my life.

Socially this is very isolating. I am married but felt very isolated for several years. I can only recommend joining something. Even if you can't attend all the time you will make friends this way.

Let me know how you get on.

Stayfocused

Mates,

Thank you so much for this post.

They have decided to put me on biologicals and if this doesn't work (god i hope it does im at my wits end, although mine is no where near as baf as yours was) I will be camping outside their base in Cornwall.

I will keep all posted on my journey.

X