Hip pain

[teresa2711]

Hi everyone, I’ve been waiting for hip replacement now for just under 3 years and the pain is getting really bad now. I’m having to get round on crutches. I’ve also got rheumatoid arthritis and osteoarthritis . I’ve tried so many different pain relief medication but none really work. I have just been prescribed gabapentin and Nefopam. Just wanted to ask if any of you members have been prescribed this and have benefited from it. Thanks in advance.

[Amnesiac3637]

Hi teresa2711. So sorry to hear you’re in such pain. I was in exactly the same situation and I’m afraid the only thing that stops that pain in its tracks is the hip replacement as I guess, like me, your hip is by now so eroded it’s grating bone on bone. I tried every drug known to man, including Nefopam and Gabapentin, to quell that awful grinding hurt and just ended up a constipated zombie.

I paid in the end and had my second hip replacement 9 months ago as I just couldn’t function with the pain of RA and osteoarthritis. Never looked back. Hope you either get your hip done on the NHS or beg, borrow or steal the funding cos it’s so worth every single penny! The very best of luck to you and keep on shouting till you get the op!

[teresa2711 in reply to Amnesiac3637]

Thanks for reply yes I’ve been told to start pestering the hospital. I do appreciate there is a backlog mainly due to covid but my qualit of life has taken a dive. I was such an active person before.

[Knip in reply to teresa2711]

Keep on contacting the hospital Theresa. My brother in law did and his done, after a wait of three years in early March. Having had the same problem in my early forties I can empathise with you. I was 44 when I had it replaced, having been in severe pain for years but it had been put off due to my young age when it started in my mid thirties. In the end my Consultant told me to go ahead and have it done and to be in a wheelchair when I'm seventy not then! I had a revision done sixteen years later when I was sixty in 2005 and reminded him of his comment, thanking him for giving me back sixteen years of fun with my young family. For the revision I had no pain, so it was very frustrating that I had to have it redone, but it showed up on an MRI for two slipped discs that it needed doing. I am probably due to have another socket now, but I'm happy to let sleeping dogs, lie. I hope you get somewhere soon with it. God Bless, xx

[Jeppy in reply to Amnesiac3637]

Did you have groin painVery pleased for you

[Amnesiac3637 in reply to Jeppy]

Oh yes and it’s because your hip joint is located in your groin. It was so bad I didn’t know what to do with myself most days and the pain was unrelenting and like you I’ve always been very active (within limits).I had to walk my dog every day and just made myself do it while I was trying not to scream! My body was out of kilter as I was leaning heavily on a stick to take the weight off my leg and of course, that affected my back. The longer you go on with it the worse it is for your whole body and your gait in future so you really need to have the hip replaced. The problem is that recently due to all the backlogs the Orthopaedic protocols are to treat those with cancers and necrotising bone problems etc. - very high risk patients - and then work their way down to the ‘routines’ which are people like you and me, in excruciating pain but not life threatening…….It certainly doesn’t seem that way when you’re in agony and even if your Oxford Hip Score is so low it almost doesn’t register. If you haven’t found that Google it and do the scoring and then shout at your GP and the Consultant. Mine was 4 out of 48. I would ring the consultant’s secretary every day and take any cancellation they can give you cos as soon as you have the hip done all that pain just goes! I’m a retired orthopaedic sister so I know how frustrating the waiting is for you and how the system works but you do need to make a real nuisance of yourself with all the medics - three years is far too long! Fingers (almost) crossed!

[Jeppy in reply to Amnesiac3637]

Hold your breath Iv had this since 2012. Agony at first but suggested I wait eight yrs due to my age. So I persevered. Eventually I can walk without pain but acute stiffness to stand upMy back near site gets agony but I know now it’s thin there and around hip area……

Rolling on I got a private consultation b4 lockdown. I’m under a little hospital I am so lucky as he phoned he every three months to be put in for pre op had to refuse as by then moving and on zero hrs so no sick pay

My concern is how I will be after the op

Will i be unable to get my body even if you know what i mean

My chikdren said I wasn’t fit enough to recoup as so hypo. Hence starting hrt im feeling so much stronger again already

Thing is they ask me to stop hrt sux weeks b4!!!?

But read it’s not nec with having patches & estrodial. I feel I’m going mad sometimes

[Jeppy in reply to Amnesiac3637]

Thanking you.

[Jeppy in reply to Amnesiac3637]

Gotten very depressed before hrt as so hypo and paining it was like the spirit just went after trying to rise above it everyday for yrs. . I didnt know if it would be better after getting right thyroid meds as told here that joint pains could go when euthyroid ? Now I’m not depressed.

My big struggle is how to forgive docs for letting me down so long

Like many was justoffered antidepressents.

But choice woukd have been nice for hrt those yrs

So, i wonder if I should remain this way as at least I can walk now my consultant says many cant

I had a second opinion in 2014 and was told to wear a white stocking and told ‘anyway you will be back with infection’ 🤷‍♀️obvs needs to be struck off’.

Scared life out of me so decided to get on with it, said he wouldn’t touch it with ‘barge pole’.

[Amnesiac3637 in reply to Jeppy]

That sounds like a lot on your plate! All I can say is that having had my first hip replaced in 2014, recovering really well after the initial op stiffness -but no pain- I had no problems as I hadn’t waited more than about four months from diagnosis to treatment. This last time when my hip started to deteriorate it was just over two years due to covid before I finally gave up waiting and paid to be out of agony. My back has suffered from the wait but on the whole, walking is fine and I can do at least four miles a day now when I feel well from all the other bits that go wrong when you’ve got RA! Don’t be put off - your hip will not improve by itself so depending on what you decide to do best of luck with all your health problems.

[Jeppy in reply to Amnesiac3637]

Many thanks I’m pleased for you! Concerning about back

How Do you mean pls

Is it from compensation

[Jeppy in reply to Amnesiac3637]

Surgeon says some backs still sore id like to understand this a bit more

[Amnesiac3637 in reply to Jeppy]

It’s because your back over- performs when it’s faced with undue stressors and it has to pick up work from other muscles and joints so the biomechanics change. Then your back muscles become stiff and sore as your normal gait is altered and can take time to re-adjust when your hip is doing its proper job and has been repaired. Usually goes back to normal but like any injury it can take a while. Anything’s better than putting up with a hip that’s worn out though!

[Jeppy in reply to Amnesiac3637]

My back is thin too. This is why I hope hrt will protect

[Jeppy in reply to Amnesiac3637]

Says Iv got spur. I asked if could cut it off. Said if I was young yes - sadly if had been given hrt I believe I would have none of this

[Madmusiclover]

Yes. I can’t tolerate gabapentin but nefopam helps me when I need it. No side effects I’ve noticed.

[teresa2711 in reply to Madmusiclover]

Thanks for the reply

[ATSF]

Hi, I have the same problem. Tried everything they can come up with. This week it was Nefopam which is totally useless. Today I will go back to Co-codermol 500/30 that at least gives some relief for a few hours a time, but the side effects are bad. Tramadol makes me constantly sick. No waiting list for me, I’ve been told I would not survive any operations owing to heart problems.

[Runrig01]

I would chase up the waiting list office at your hospital for an update on how long they expect you’ll still be waiting. Unfortunately these days the surgeons have little influence on who they go when. It may be you were initially listed as routine, the waiting list staff can confirm this. In which case, your consultant may change it to urgent to move you up the list.

[Fra22-57]

Sorry to hear that.My friend has only had to wait a few months.We were shocked when she messaged us this morning saying it was next week .NHS sending her to local private hospital. This hurries things on

[Bella59]

Sorry to hear you have been waiting so long.It appears to be a post code lottery.I have had two hip replacement in last seven months.I had to use my savings to get them done.I would ask gp to write to Orthopaedics asking to see you as you are in extreme pain.It is worth a try to see if you can move up list any quicker.As you say apart from horrendous pain you are not able to do much,which can then impact on our mental health.I hope you will hear soon.

[Annieb24]

I found no relief from any drugs. Call and email the hospital very regularly.

[Jackie1947]

I'm so sorry you are still waiting. My advice is pester, pester your consultants secretary begging if necessary and putting your case. Write to the hospital complaints dept. Your GP could contact them too. I don't know if it will work but it's better than not doing it. Good luck

[Fruitandnutcase]

I was given gabapentin after I broke my wrist two years ago and ended up with CRPS - I started with pregabalin (Lyrica) and really didn’t get on well with it, it felt like I was having an out of body experience - really horrible. So I stopped that.

Later on I was able to get zoom physio from a hand therapist who suggested I try gabapentin - so got that and had similar feelings. It also affected my vision - blurred and everything felt ‘grey’ all that disappeared when I stopped it.

I had also started on bisphosphonates and I don’t know if it was a combination of the gaba drugs with the alendronic acid or what but, in the end I stopped the bisphosphonates too because I felt so ill taking them.

What you really need is a new hip. My husband said his hip pain had gone as soon as he came out of theatre (although obviously the wound aches) and and my American friend who has just had her hip done is saying the same. So chase up your doctors.