Wont some one to talk to

brinny

Hi I an new to Arthritis care and I need someone to talk to or someone to just listen. Last year I had a hip replacement although I had to wait 6 months for it and was in a lot of pain and could not walk with out aids all is fine now. My problem now is that I need my other hip replacing my family and friends are great but I don't feel they want to listen to me and don't understand what im going through .I am in a lot more pain than last time carnt sit down for 2 mins and I am in pain the same when I get up to walk with aids.im not sleeping whatever way I sleep im in pain I only get about 3 hours sleep a night. I cannot stand and cook a meal or have a bath or shower (because my shower is in the bath) I sit on a chair at the sink when doing all these things I am in bad pain. I can no longer get upstairs so a bed has been brought down for me. I can no longer drive as my husband works iam stuck in the house all day. I have medication from my g p and when they no longer help they give me different ones. I have had some help from social sevices with aids such as a chair and bed rail.Thanks for listening to me iam feeling very low at the moment
PS I have been waiting for seven months for this operation.

barbara12

Hello brinny and a warm welcome from me
I know some of what you are going through, I had my first hip replaced nearly 3 weeks ago...not sure how old you are I am 63...am due to have my other done when I am ready
I am so glad you have joined us talking to family can be so hard and the best thing about this forum is that we are all suffering in our own way so can understand and support one another.
I do feel for you having to suffer like this, and I hope you get the second op very soon
Dont forget we are always here..x
PS can you not ask the hospital to be put on a cancellation list...that could speed things up...the waiting list is not suppose to go beyond 18 weeks so I should ring them up.

maria09

Hello and welcome
This is a great site to let off steam everyone understands as everyone goes through the same things
The support and advice I've had over the last 4 years have got me through the most difficult times in my life
Barbara is right you need to contact the consultants secretary or if you don't know contact your GP as you may have slipped through the net
Maria

brinny

Hi Barbara
Thanks for getting back to me so soon and for your kind words. I am 59 had my first op a week after my birthday last year I am over that now and pain free as you will know you only have the pain from the op now. Its the other one bothering me now I was put on the urgent last in Jan this year I rang the hospital in May and was told no one had been admitted fro 5 weeks because of a bed shortage to ring back in 2 weeks so I did was told people were starting to be admitted that week so they were 7 weeks behind and I was looking at end of June for my op ring back in a month. I did and was told the nothing much had changed and the urgent list had gone out the window (why didn't she catch is sorry being sarcastic ) and the surgen was on holiday in July so I was looking at August now so as Thursday is the 1st of august I will be ringing again. Don't get me wrong when I was in hospital last time all the staff were fantastic right down to the lady who brought our food nothing was to much trouble for her and she made us laugh every day. Thanks for listening again Barbara and hope you don't wait long for your next op.
xxxxxxxxxxx
Brinny

brinny

Hi Maria
thanks for getting back to me and for your kind words. If you can see my last reply to Barbara it explains that I have been ringing the hospital.
xxxxxxxxxxx
Brinny

dreamdaisy

Hello Brinny, it's lovely to meet you and I hope we can help with information and support. I am not in the same position as you, I have OA plus an auto-immune arthritis, but I am waiting for new knees - only another year to go. :roll: Meanwhile everything continues to deteriorate and yes, I now spend a great deal of time indoors - and on here! I too cook and iron sitting down, chores are broken down into manageable chunks with a rest in between each 'burst' of activity but the main thing is I am still doing things, well, as much as I can.

It is not easy living with constant pain and tiredness but all of us on here do to some degree. We know how tough it can be from time to time so come and talk to us, we do understand. I wish you well. DD

maria09

Hi
I hope you can get this sorted sooner rather than later its stressful enough without having to constantly follow up on the hospital
I wish you all the best for your future op
Maria

DebbieT

Hi & welcome,

I'm glad uve found this forum coz the members are fab I only joined in April, I think!

I'm 43 & have Osteoarthritis, Psoriatic Arthritis (autoimmune type), Psoriasis (skin condition) & Fibromyalgia. I have a few other health problems but theyre the main culprits.Lol

I haven't been able to go upstairs for quite a few years now but we're really lucky as our council built a disability extension with wetroom, it's made our lives so much easier. I do need help to wash my hair etc tho due to neck & shoulder involvement. It's embarrassing & SO frustrating isn't it? I really do feel for you (((hugs)))

I'm so glad that ure first THR worked so well for you It must make the impatience & waiting worse knowing the benefits ul receive in the very near future! :? I was dismayed to learn it's common practice to make sufferers wait until theyre 55 yrs old b4 they'll replace knees :shock: I'm hoping that's not the case for all replacements?

I don't think replacements will be in my future as my arthritis, on the whole, seems to be eating bone (Ok, wearing it away lol) where the tendons & ligaments meet bone, only OA is affecting the joints I think!!

I'm rambling away hoping it seems like a chat as I can't offer any helpful advice, I'm sorry!! The group is fantastic tho x

barbara12

Hi brinny again
Its disgusting how they are treating you, for goodness sake they could keep coming up with excuses...I was admitted within 7 weeks..I know all trust cant do this but the amount of time you have been waiting is awful...please let us know how you get on...there are pals you could get in touch with they can sought things out on your behalf...good Luck with everything x

nearlybionic

Hi Brinny
I am sorry to hear you are suffering so much with your hip, and hope you get a more positive response when you ring this week.
I had my 1st THR 4 years ago aged 40 and my other one was done 3 months ago. I had my op`s at the same hospital as Barbara and she is right that you should be seen and treated within 18 weeks of your referral. The time you have been waiting is not right at all. I would contact PALS at your hospital and ask them about the waiting time rules and explain your predicament. You could also run this by the surgeons secretary! Have you asked your GP about an alternative surgeon , with a shorter waiting time? (I mean to do this if you don`t get given a date when you ring this week)
Good luck
NB

dreamdaisy

Hello brinny, how are things with you today? DD

brinny

Hi DD
Im not to bad today I was at the doctors this morning and she gave me more painkillers to take with the ones I already take. So hopefully I will get a better nights sleep tonight. On average im getting about 4hours a night. How are you DD.
Brinny
xxxxxx

dreamdaisy

I would prefer to answer with the truth but won't. The past nine months or so have been very tough for me and my husband, one way and another, but that matters not because things will get better because they always do. It's good to hear from you again and I hope you will stay in touch; I am sure that we will be able to help and support you along your path with arthritis, that is what this forum does. I hope you get a better night's sleep, there's no doubt that helps. DD

hileena111

Hi Brinny
That is a long time to wait...I've had one THR and am due an apt with the orthopaedic surgeon to discuss the other one soon.
Who do you talk to when you ring? Appointments? I always speak to the secretary and they have been wonderful....I was told by one of them that they usually have a few spare dates that they can hand out as they see fit....and she did {Not for THR} but it was going to be 3 months wait and she got me in the following week.
Have you got a perch stool from the OT....to sit on when preparing meals, ironing etc? I cant do very much at one time but the perch stool and pacing myself I eventually get things done.
As for bath or shower.....I have a shower cubicle but its awful.....too small for me to be comfortable...I also have a bath with a shower over it.....I use a bath board across the bath and sit there and wash myself soak my feet and legs etc That shower isn't attached to the wall so I can stand up and use the shower to rinse all the shower gel bubble bath or whatever off...its not ideal but it works....occasionally if my OH is about I can manage to get into the bath and have a soak {knowing he is there although I've had to ask for help.}
What about a bath lift...there are various kinds.....anything like that help? The OT brought a few for me to try.
Well....just off to the hairdressers but I'll be back to check my posts.
Keep talking to us....families can be great and very supportive but don't understand the way someone else with arthritis does
Love
Hileena

tkachev

Hi Brinny,

So near yet so far.We have an 8-12 week waiting list here. I've had 1 THR but am holding out on the 2nd as with a Son with special needs I don't have the confidence that he will be cared for whilst I am in hospital.

your family must be aware of the pain you are in as you have had to move your bed downstairs and have stopped driving. A lot of people don't realise how painful it can be and we do our best to hide it all but have you told your family that it is much worse than last time?

Please don't feel lonely as we are all available to support you,
Best wishes
Elizabethx

dreamdaisy

Hello again, how are the new meds going? Are they helping? DD

woodbon

Hello I'm so sorry you have so much pain, it sounds awful.

I haven't had the thr, but I've had different surgery, which left the pain so bad I was unable think of anything else It takes over your life when its bad. I wish I had something to offer you, but I haven't and can only send lots of love and good wishes.

Maybe your family do see how bad you are but don't know how to deal with it, or think if they don't mention it too much it'll stop you thinking of it. I don't think loved ones know how to cope of what to do for the best when you'r in pain. I hope it soon feels a bit better. Love Sue xxx

lazicat

Hi Brinny
So sorry to hear how much pain you are in. I understand how you feel , I had my first THR last July. The pain beforehand was unbearable , I found fentanyl patches were good as a top up with my other meds & helped me sleep better at night. Perhaps you could ask your GP about them , start on a low dose & can be increased until you feel more comfortable.
I too think I will need my other hip done at some point as its alot worse now than a year ago & Im due to see my surgeon for a review at the end of the month. Its so depressing having this pain for such a long period of time as well as frustration at not being able to do much , feeling a burden & coping without sleep & isolation. My GP perscribed antidepressants - flouetine , as she said when you have pain for a long time & are on meds , seretonum levels become low & make you feel depressed. I feel as though I rattle with all the meds , but they certainly helped lift my mood and helped with sleep. Try to sit outside in the freshair and/or sunshine each day for a little while too.
Also when waiting lists are long in my area, they offer some patients treatment at the private Spire Hospital paid for by NHS as they are not allowed to keep you waiting too long , I think it could be a good option for you, no harm in asking about it.
Good Luck and stay in touch on here , Ive found help . advice & support amazing.
Take Care x