pain!

[Holycow2]

Hi, I have end stage osteoarthritis and was told before Christmas I would have my op by April. I’ve still not heard anything. The pain is horrendous now. I am taking Tramadol. Paracetamol, naproxen and amitriptyline . The Dr also recently prescribed morphine which done absolutely nothing so stopped taking it. He has now trying me on gabapentin which I’ve been on for a week with no difference. My question is is there anything else I could be given? I’m still working full time which is extremely difficult now but I won’t give up work! Bone on bone scraping every move with pain going from my hip, bum, growing, all down to my ankles!! Any advice would be great appreciated 😭

[Bcol]

Good morning, bit confused about "end stage OA". you were also diagnosed with PMR around a year ago and taperered to 1mg during that time. That is an extremely fast taper and totally at odds with the experiences of most of the members of the PMR/GCA forum. I'm on that and the OA forum. As the standard pain relief is having no effect I would suspect that your PMR has flared and that you need to go back to the dose that first gave you relief. It maybe that you need to start even higher for a few weeks to clear out the residual build up of inflammation. Then you can think about the slow taper downwards. Plenty of info and help on the PMR forum. The average length of time for getting off Pred with PMR is around six years. You will also need to adjust your life style and remember you are ill and need rest. The Pred doesn't cure anything, it just manages the disease/inflammation until it decides to die down. If you are not a member of the PMR/GCA forum it wil be worth popping in and joining us. Lots of wonderful and knowledgeable people and a wealth of experience and information.

[Holycow2 in reply to Bcol]

Hi, thanks for the reply. I had put my dose of Pred up to 7 a few weeks ago and I’m now just started 6.5 this week. By end stage arthritis I mean j have nothing left only bone, no cartilage hence why I’m having the op. I think the pain is from my arthritis as it’s only one side coming from my hip and all down my leg. I’m on the PMR forum which has been really helpful. When I first had PMR symptoms it started in my shoulders and I just thought I’d pulled them but it went on for a few weeks and got worse so went doctor and was diagnosed and started on 15mg of Pred. That was around 20 months ago.. I’ve never been one for going to the Drs unless I have to😄 and I do try to rest I some sleep for 12 or more hours however I do 12 hour shifts with some of these being nights. My Dr told me the morphine is not working as it’s probably nerve pain this is why he has added the gabapentin to see if it helps. I’m just wondering if that has no effect where do I go from there and if anyone had any suggestions

[DorsetLady]

Think both you and your GP need to be pushing the orthopaedic team for an earlier appointment for surgery [I know it’s not easy] - but if I were in as much pain as you are, I’d be ringing the appointments people for a cancellation almost on a daily basis. Shouldn’t have to in an ideal world, but as we know things aren’t ideal at the moment.

[Holycow2]

The surgeon told me last Sept/Oct it will be “by April” also said he would try to get me in sooner but still nothing! I sent another email last week and as of yet have not had a reply. Saw my Dr last week who prescribed the Gabapentin as well as all the other meds just not the Morphine as it’s useless 😭 Really had enough now between worrying the PMR will come back and the pain from my hip. Thank you for your reply 😄

[Hidden]

Hi Holycow2,

I def understand your pain I am so sorry you can’t get you op scheduled earlier. I too have / had OS in my left knee bone on bone stage 4 the right knee is shown the same but stage 2 which will need done in the future. I was on various pain killers and only able to walk 30 / 40 mins at a time before having to sit down for a break. I had my op on 11th Feb (outside the UK) I considered myself as one of the lucky ones because since the op I hardly had any pain I suppose it was also due to pain relief.

I am just under 7 weeks post op and only take basic Panadol 4 times a day now. My biggest issue is the swelling I had so much swelling before the op and have the same after the op which stops me bending my knee to the degrees they want. I’m getting really frustrated with myself and receiving so much different info from google, Dr, Physio, sports Physio.

The Dr did give me pain killers and anti inflammatory tabs but to tell you the truth all have been binned as most tabs have either upset my stomach or made me into a zombie especially the Tramadol. Also once I looked up the side effects no way not worth it.

I am in my 25th session of Physio they are trying everything on me. A CPM machine, ice boot, compression boot, hand massage, sports massage but the swelling is still the same.

I have been dodging the doctor office as I think he may want me to go ahead with MUA and I really want more time to see if I can heal.

Really hope you get your op soon.

[Holycow2 in reply to Hidden]

Hi DeeDee, thank you for the reply! Oh my goodness I really feel for you! This sounds horrendous. If I was you I’d take the time to heal like you said, after all you know your body better than anyone else. I’ve been on Tramadol 14 years! I first started taking it for my back which sometimes goes into spasms that are unbearable and now still taking them for hip. They are highly addictive and I have spoken to my Dr who says I need to wean off them after my op. He did say it’s going to be very difficult which I know as I did not really realise what they were when I started taking in 2009. I took for 3 weeks then just stopped and felt so Unwell! I would not advise anybody to take them long term.I really hope you get your issues under control very soon ☹️

[Batty1]

Can you call your surgery who is planning on doing the procedure? Have you tried a hip brace as a temporary fix?

[Holycow2 in reply to Batty1]

Hi Batty1. I have just been informed that I am on the “priority list” not sure if that really means anything though! I haven’t tried a hip brace, I’ve not actually even heard of them. Thank y for the suggestion I will have a look into them.😀

[Batty1 in reply to Holycow2]

Look on Amazon I was researching them for my mothers arthritis… obviously not a cure but might take the edge off.

[Holycow2 in reply to Batty1]

Thank you!

[paxom]

I am sorry you are having so much pain. I also am having pain almost everywhere in my body, but I have had arthritis for over 2 decades and try to keep drugs to a minimum. Now, I am having to use them much more often, but wake up in pain every night. I just started using a vibration machine and am hoping this will help after some time. I also do yoga and other exercises for my pain, which I think are helping.

Good luck finding a solution that works for you better than what you currently are doing.

[Holycow2 in reply to paxom]

Hi Paxton , thank you for the reply. I also wake up every night in pain. I think it’s where I am turning over in my sleep but can’t without gripping my bed headboard to pull myself over. I’ve not heard of a vibration machine but will definitely look into it. I really hope you get some relief soon. I’m at the point where I will take any medication if it helps