Any Advice Would Be Welcome Please

janetw

Good Afternoon.

I was hoping someone may be able to advise me on how I can cope at the moment please?

I have osteoarthritis in my right knee, caused by general wear and tear caused by Spina Bifida (or so my consultant told me).

I saw a pain consultant in November last year, (previously an orthopaedic consultant who did 3 steroid injections and said basically he could do no more) The pain consultant prescribed Codeine Phosphate (30mg), Paracetamol (500mg) and Pregabalin/Lyrica (50mg), and to also use Voltarol cream on the joint itself.

I have done this religiously, but for the last few weeks, nothing I do helps, I've tried cold/hot things, elevating the joint, and keeping as mobile as my disability allows me to, I'm at the end of my tether and can't see the consultant again until the 8th of June.

I'm sorry for the rambling post.

Take care.

Hugs.

Jan x

frogmorton

Hi Jan

Poor you

I suppose the spina bifida may have meant you have put pressure on teh joint and caused the wear and tear?? Hence the diagnosis of OA.

My guess is they will put off doing surgery for as long as possible - as they do.

The meds you are on should be helping but as they are not you need to get back to your GP as ask for further help whther that be pain clinic referral, change of meds or even referrla to physio...

Have you got access to a tens machine to try??

I do hope it eases for you

Take care

Love

Toni xx

dreamdaisy

You are having a rough ride, I am so sorry.

I don't know what to suggest - my problems are different to yours but the one thing all of us on these forums has to learn is coping with pain. Quite a few of us are in constant, unwavering, unrelenting pain - no matter what we swig and swallow it doesn't go away. You seem to have a good range of meds available to you and at least the OA is only in one joint at the moment, so that is a positive thing on which to focus. Easy for me to say - I have no idea what spina bifida feels like or whether that hurts too. I have psoriatic arthritis and the only joints that are not currently affected are my hips and spine. Life is hell.

In the past (before it really got a hold) I found that rose hip capsules were good at easing inflammation and pain. Like all things they don't work for everyone - I bought mine from Healthspan in the Channel Islands 'cos they're cheaper and better strength than Holland and Barrett. I have also found magnets beneficial - I have a magnetic knee support (which no longer fits) and that was good at easing pain. I also have a range of non-magnetic supports which used to be very helpful when walking. They may help too, even if you're wheelchair-bound.

When at rest support your knee with a pillow or cushion - that makes a tremendous difference. I sleep with one too. That's all I can think of at the moment - if I have any more thoughts I'll come back! Dreamdaisy

lindalegs

Hi Janet ane welcome to posting

You seem to have tried alot of things already. When a particular joint is painful I use a TENs machine to help control the pain. Alot of peeps on here use them. I bought mine from Boots last year and it cost around £50 but I'm sure you could shop around to see if you can get a better deal. Some surgeries and/or physios will let you have one on loan to see if you get on with them before buying.

The other thing I have is a knee support from the chemist. Mine has velcro fastenings which is helpful if my knees are swollen and can be tightened, loosened as required. These are good if your knee needs extra support but are best not relied on because of muscle wastage.

Hope this helps.

Luv Legs

patriciamary

Hi Jan, I also have OA in both knees I know the pain you must be experiencing. Like others have suggested you should try a Tens machine. I use mine regularly and fortunately it does help me. Boots have Tens machines but they are about £50, Lloyds chemist does one and its under £20, and its good, I bought one for my sister because she suffers from back pain. I hope there is a Lloyds within your area. I also use a knee support which I bought in Boots and it is great, cost £17 but worth every penny to me. It has velcro fastening so you can use it even when the knee is swollen. It also keeps the knee warm which you might find helpful. My knee gives way sometimes and this support has really helped me. Its not very pretty to look at so I usually wear it under trousers. Ask your GP about Tens because they can provide them although many GPs expect you to buy your own. I hope things improve for you soon.
Hugs to you
Trisha

dachshund

Hi Jan.
i dont know anything about spina b.
but i know how you feel i have cerebral palsy and the doc said to me if it was not for your condition
you would not have wear and tear.
i have thr and tkr i have arther in my spine and hips and other small places.
i'm not on the same tabs as you but i find a wheat bag helps.
also to sit down when you get tired.
i'm on anitriptine and diclofenic.
this is a good forum the people are kind and helpfull. take care joan xx

janetw

dachshund wrote:

Hi Jan.
i dont know anything about spina b.
but i know how you feel i have cerebral palsy and the doc said to me if it was not for your condition
you would not have wear and tear.
i have thr and tkr i have arther in my spine and hips and other small places.
i'm not on the same tabs as you but i find a wheat bag helps.
also to sit down when you get tired.
i'm on anitriptine and diclofenic.
this is a good forum the people are kind and helpfull. take care joan xx

Hi Everyone.

I have a TENS machhine, which worked for a while, but now like everything else, it doesn't.

I emailed my consultant earlier, and they've faxed my GP saying there are other tablets I can try, and to attempt to ring for an appointment in the morning.

Take care.

Hugs.

Jan x

woodbon

Hi, I have OA in quite a few joints. I have had my medication changed and I find what I take now helps a lot more, I have tramadol slow release and you only take a tablet at night and morning and they last through the day or night. I did have the ordinary tramadol, which helped more than the other drugs but, as I had trouble sleeping, the pain clinic changed them. I also have amatriptylne to help sleep.

It often takes a while to find the best medication for you, and I have been through quite a few things that made little difference. Faxing the pain clinic was a great idea, and hopefully, this time you'll find something that works for you. If not, let them know, their are lots of painkillers about and often its just a matter of finding the right one for you. Good luck, love Sue

dorcas

Hi Jan,

just popping by to say welcome to the forum.

sorry you're having such constant pain but now that your consultant has become involved you'll may be get better more effective pain killers.

hope to see you posting around the forum.

Iris x

janetw

dorcas wrote:

Hi Jan,

just popping by to say welcome to the forum.

sorry you're having such constant pain but now that your consultant has become involved you'll may be get better more effective pain killers.

hope to see you posting around the forum.

Iris x

Thanks Iris x

maria09

Hi Jan,
Im sorry to hear you are suffering
It can sometimes take awhile to find the correct painkillers that work & suit you so many have side effects
I must have tried nearly them all!!
I take Celicoxib, Hydroxyqhloriquine, Paracetamol & Tramadol which helps but does not take the pain away but keeps it at a tollerable level. Although if I have my full doses of tramadol it sends me a bit dippy family says no change there!
Take care
Love Maria x

skezier

Hi Jan,

I hope you soon can get some tablets that will help you. I have tramadol but try not to take them as they make me feel like I got a hangover and thankfully since I have been on the pregabalin I haven't needed them too much. there are so many combinations and I really hope they will find one that works for you soon. Nice to meet you. Cris x

janetw

skezier wrote:

Hi Jan,

I hope you soon can get some tablets that will help you. I have tramadol but try not to take them as they make me feel like I got a hangover and thankfully since I have been on the pregabalin I haven't needed them too much. there are so many combinations and I really hope they will find one that works for you soon. Nice to meet you. Cris x

Hi Cris.

I have just got back from an emergency GP appointment, it was a locum, very nice, but fairly abrupt in his approach :roll:

He's told me to increase the Pregabalin, put me on Di-Hydrocodeine, and Methocarbamol, told me I must rest.

I give up, I'm told one thing by one Dr and something else by the hospital .

Take care.

Hugs.

Jan xx

skezier

Hi Jan,

Another ((( ))) and a hope you are able to rest?

I swear by pregabalin I really do...... I don't know what does your on but I am meant to be on 600 per day just I tend to have 475 as 600 and I am out of my tree.

Going to keep my fingers crossed for you and sending a bucket load of hope. Cris x

dreamdaisy

Oh skezier, thanks for the laugh! I have visions of you floating to earth, from the top of your tree, in helpless giggles and a pink sparkly ballerina frock.

To the original poster (whose name I have forgotten, so sorry) it is amazing what different things you hear from different medicos: basically it's all down to their personal opinion. I have seen a number of rheumatology consultants and they all disagree on so many points: one says diet isn't a factor, another says it is. One swears by such-and-such a drug, another won't touch it with a barge pole. We're left, piggies in the middle, trying to decide what is best for us. It's a struggle, and one we often feel we're losing, but that's why the forums are here - so we can muddle and confuse you further! (That was not a serious comment). Take care, let us know how you are getting on - we care. DD

skezier

Hi DD,

You been spying on me Its a lovely pink one I share with a sheep...... hey this is not pregabalin induced so imagine how high I can go

Just out of interest have you ever tried it? its very good at knocking out pain if your lucky. There may be reasons why you can't have it but well.... My Rumo and I actually had the quality of life discussion and he recommended these as being on a par with the morph and opion but with out the side effects of sickness and sleep....... I know I just have a ow tolerance but do have the 600 on a bad day..... from posting its possibly noticeable when I am having a bad day......... Cris xx

Jan I also think the best pain relief I get is through music...... I don't know how that works though... x

dreamdaisy

I had never heard of pregabalin until I stumbled across the forums. I'm keeping it in reserve because I get on fine with tramadol. Thank you for the thought, though. DD

janetw

dreamdaisy wrote:

Oh skezier, thanks for the laugh! I have visions of you floating to earth, from the top of your tree, in helpless giggles and a pink sparkly ballerina frock.

To the original poster (whose name I have forgotten, so sorry) it is amazing what different things you hear from different medicos: basically it's all down to their personal opinion. I have seen a number of rheumatology consultants and they all disagree on so many points: one says diet isn't a factor, another says it is. One swears by such-and-such a drug, another won't touch it with a barge pole. We're left, piggies in the middle, trying to decide what is best for us. It's a struggle, and one we often feel we're losing, but that's why the forums are here - so we can muddle and confuse you further! (That was not a serious comment). Take care, let us know how you are getting on - we care. DD

Hi DD.

I'm so glad I joined the forum.

My new medication seems to be helping already.

Take care.

Hugs.

Jan x

dreamdaisy

Terrific! We be a good lot on here, keep in touch because we do other stuff too. Have you checked out the chit-chat forum? I love that one.

I joined when I was on a downward slide, and the last few days have been hellish. Posting takes my mind off my worries and I have had nothing but support and encouragement from everyone. Take care and I wish you continued improvement. You have a new perspective to offer and we can learn from you. Dreamdaisy

janetw

dreamdaisy wrote:

Terrific! We be a good lot on here, keep in touch because we do other stuff too. Have you checked out the chit-chat forum? I love that one.

I joined when I was on a downward slide, and the last few days have been hellish. Posting takes my mind off my worries and I have had nothing but support and encouragement from everyone. Take care and I wish you continued improvement. You have a new perspective to offer and we can learn from you. Dreamdaisy

Hi DD.

How are you today?

I slept better, but the Dr did warn me some of the side effects od my new drugs are a bit hellish, but hopefully once they're in my system. that should ease I hope.

Take care

Big Hugs.

Jan xx

frogmorton

Hi Jan

That IS good news!! I am so pleased that you are feeling so much better

Hey Daisy - how did you know about Cris' tutu???

did you know it's really

hers?

Love

Toni xx

dreamdaisy

Morning janetw. I'm feeling very virtuous - I was in our big Sainsbury's by 8.15am and out by 8.45. I am guaranteed a disabled parking space at that hour (us disabled are a lazy lot! - not) and the store is quieter so I don't feel I'm getting in busy folks' way. I had to buy ingredients for a girls' night in with a load of friends on Saturday. We're all contributing food and wine and there will be ten of us. We haven't had a girls' night since '98, so it's going to be fun!
(I keep telling myself that 'cos although I instigated the idea I don't want to go now.)

I then took my beloved little blue Micra to the Polish Guys ( as everyone around here calls them!). They do a splendid wash, dry, polish (arf-arf - get the pun?) and tyre blacking for the princely sum of £5. Baby is gleaming again and looks gorgeous. I love sitting in my car as six or seven lovely young men swarm around me. They know how to work. Somehow I cannot imagine the same number of spotty British youths doing the job.


Generally I'm a little brighter today, so I hope that lasts. I hope you are OK too. Dreamdaisy.

janetw

dreamdaisy wrote:

Morning janetw. I'm feeling very virtuous - I was in our big Sainsbury's by 8.15am and out by 8.45. I am guaranteed a disabled parking space at that hour (us disabled are a lazy lot! - not) and the store is quieter so I don't feel I'm getting in busy folks' way. I had to buy ingredients for a girls' night in with a load of friends on Saturday. We're all contributing food and wine and there will be ten of us. We haven't had a girls' night since '98, so it's going to be fun!
(I keep telling myself that 'cos although I instigated the idea I don't want to go now.)

I then took my beloved little blue Micra to the Polish Guys ( as everyone around here calls them!). They do a splendid wash, dry, polish (arf-arf - get the pun?) and tyre blacking for the princely sum of £5. Baby is gleaming again and looks gorgeous. I love sitting in my car as six or seven lovely young men swarm around me. They know how to work. Somehow I cannot imagine the same number of spotty British youths doing the job.


Generally I'm a little brighter today, so I hope that lasts. I hope you are OK too. Dreamdaisy.

Hi DD.

It sounds like you've had a busy morning so far

I'm not too bad thanks, just a bit tired, I'm guessing that'll be my new medication getting into my system.

I'm under strict instructions tro rest as much as I can.

Take care.

Hugs.

Jan x

dreamdaisy

Obey instruction! Feet up, good book/music/paper/telly, whatever lights your candle and rest, rest and rest some more. These drugs are punishing on the body and we have to help it as much as we can. DD

janetw

dreamdaisy wrote:

Obey instruction! Feet up, good book/music/paper/telly, whatever lights your candle and rest, rest and rest some more. These drugs are punishing on the body and we have to help it as much as we can. DD

Hi DD.

I will be doing as I'm told , I have Spina Bifida as well as everything else, and I feel a bit "wobbly", so I'm definitely going to rest as much as I can.

Take care.

Hugs.

Jan x

dreamdaisy

I hadn't fogotten that, it just didn't appear seemly to mention it. Hope you are doing OK today. DD