Chronic pain and PIP enquiry.

[BippityBoppity87]

Wondering if anyone has any advice about PIP? I've never had this before, but I've been thinking about applying because of my knee problems. Would there be any point?

Back story, I've had this pain for nearly 3 year now. It's very debilitating. I can't walk for long distances, often having to rely on buses and taxis to get around. I can only work 2/3 maximum shifts a week because of this as well or I'm in too much pain. Struggle with the stairs, can't bend/kneel down. It's making my life a living hell. Sleep has gone to pot as I wake up constantly throughout the night in pain.

I've been to the GP before and all the tests came back clear. Been to physio, a&e, minor injuries. Been given strong pain killers and crutches. Nothing is cutting it I'm only 31.

Any advice would be greatly appreciated.

Anyone?

I also went to sit down last night (after a wrote the post) and heard a massive crunch in my knee. It was so loud my DP heard it. I was in agony, almost in tears with the pain.

Could barely walk today.

sounds like you need a MRI and referral to orthopaedics, push your GP for a referral.

Thank you for the reply fitflopqueen I have another appointment with the GP in 3 weeks time. I feel like when I mentioned my pain last week I was pretty much fobbed off, told to go back to physio and given 8/500mg co codemal, which quite frankly, has done fuck all.

Can physio refer to orthopaedics directly? They can in our area so possibly worth going back. Ours can also do things like joint injections etc. However, NICE guidelines for knee pain say that a person should be referred to an orthopaedic surgeon if there is no improvement after 3 months of physio, so I would print those off for your next appointment.

Maybe ask for a referral to pain management too, there are usually long waits, but it will at least highlight the pain you are in.

Regarding PIP, I get it, for chronic (nerve) pain and fatigue, and the diagnosis is less important that the effects it has on your day to day life. I would say though, that evidence is very important to back up your claims, so it could be better to push hard for some consultant input to get the right treatment for you before you apply. BTW not saying that to minimise your pain - it is just the way they do things - I sent in stacks of letters from consultants/physios etc and they still took nearly 6 months to make a decision!

If you do decide to apply there is lots of good advice here and elsewhere online though. Hope you can get your GP to listen to you anyway - good luck!

Thank you for the advice lyrebird1 I'm going to ring physio tomorrow and hopefully get another appointment.

I've never heard of a pain clinic, but I live in Scotland, so I don't know if they have them here?

One thing I have noticed though, is one leg is quite noticeably longer than the other, so I don't know if that has anything to do with it? Or maybe my hips aren't quite alligned after giving birth? I've heard that can be common.

In regards to everyday life, it does affect me drastically. Like I said in my op, I can't walk for long periods. I'm can't work full time. I'm scared every time I leave the house, my knee might buckle or crack. It's horrible.

Have you been offered insoles with a heel raise? That could help massively.

How is your health overall? Do you smoke/ are you overweight?

I've had insoles before, didn't help JuniperBeer I do smoke, I gave up for 4 months then started up again (stupidly) mainly because I've gone through a tough time mentally. Had crisis team involvement.

I would say slightly overweight, but not massively, and it was never brought up at the gp for my knee problems.

I can't even do the littlest things that can sometimes be taken for granted. For example, I can't put socks on. And I struggle to put trousers on.

I just have to make do with easy slip on ballerina flats. I dread when Winter comes, as I know I'll have to rely on my DP putting my boots on. But he works full time, so more than likely I'll be on my own. I'm also have a 2 year old, so running about after him is out of the question.

I was diagnosed with a congenital leg-length discrepancy in my 30’s and I had to have special insoles made. I was quite lax about wearing them and ended up with huge issues including scoliosis in my back, chronic neck pain and rib pain. I’m now in my 50’s. It’s astonishing how much the mis-alignment affects your skeleton and muscles. I now wear them religiously but the damage has been done.
You need to see a podiatrist who will make a mould of your foot and create a custom orthotic. I only have to wear it in my left shoe so it was half price for just one! It still cost about £300 in all though.

I don't know about pip, but has a physio given you a full check? Not just looking at your knee, but your entire body? If your pelvis is twisted (mine can twist due to hypermobility) this can cause issues with knees. Same if your feet are flat (they may only be flat when you're stood on them). If your quads or gluts are weak, this can also cause imbalance.
I found the NHS staff keen to try and treat my pain but not find out the cause and treat that. A private muscular skeletal doctor and then private physio sorted it out for me. I appreciate not everyone can afford that, but even a single private physio appointment could be beneficial.

Forgot to add, there's a little contraption you can get for putting socks on, it's ace! I got it from an occupational health team.

Thanks for all the replies. No they haven't done a full check, just my knee. I need to ring up and make another appointment.

I even struggled to get off the bus today, as there's no easy way getting off the bus unless I ask them to put the ramp down, which I would never do!

That sounds good about the sock thing, definitely going to ask for that!

I might consider going private. How much does it cost roughly?

sorry to hear that.
pain is a real pain to deal with. (ha ha)
can your physio give you a summary of what's going on? if it's cartilege, bone, muscular, tendon? take that to gp. sounds like you need a referral to a specialist.

private cost in scotland I don't know.

but in se england it would be about 200£ for a consultation. any tests, medications, x-rays, plasters are on top of that. diagnostics can be really expensive, a full blood count can easily be 200£.

not to scare you but to give you a realistic picture.

Another vote for the sock putter on her things, also shoe horns and those handy hand picker uppers. Just a thought but how are your hips? I had very bad knee pain which turned out to be to do with my hips.

Crocs are your friend too, even though they look awful good for around the house

Ouch, that sounds expensive! I don't think I would be able to afford that.

My hips feel fine. I don't get any pain in that area. Sometimes when I'm sleeping I get terrible pain on the outside of my thigh though, but I find wedging a pillow in between my legs helps massively.

I think it's the tendon. But somtimes I can hear a clicking or a grinding noise in my knee if I move it too much.

I think I might invest in a shoe horn!

Private physio in West Yorkshire is £45 for the initial consult. You don't need a private doctor, just a physio.

That sounds reasonable @delilahbucket

See a private Physio
Do your research and find a specialist
Nhs physios are crap

I help people to apply for PIP as part of my job and from what you’ve said, I think you should get it. A key question is whether your condition has affected you for 3 months or more and will affect you for another 9 months or more. There is more info on PIP eligibility here and you could also do the PIP self-test.

My advice is to start your claim now, as it’s a long process, and don’t wait until you have medical evidence - you can get more evidence and send it in later. I agree with PPs about getting a consultant referral but if you don’t get one or have to wait a long time for an appointment, you can send in letters from your GP and/or physio as evidence - but the key thing is to tell them about all your issues and how they affect you. A diary can also be helpful. You can find advice on evidence here.

Lastly I suggest that you get Citizens Advice or similar to help you fill in the claim form. Starting the claim is easy - just a phone call - but they will then send you a long form (PIP2) and there’s a bit of an art to filling it in, so it’s good to get help with it. Alternatively there are good online guides too.

totally agree with private physio.
I don't quite know why there is such a difference between nhs and private, but ime an assessment with a private one can do wonders.
they can really look and feel the joints and muscles and tell where they think the problems are coming from.

another thing: do you have a walking stick? that might help you, if only to get a seat on the bus and a bit more time getting on/off.

That reminds me, you could ask your GP about an Occupational Therapy assessment. They can advise on mobility aids and if there is a written report you can use it as evidence for PIP.

Actually you don’t have to ask your GP about an OT assessment, you can contact your local council.
www.careinfoscotland.scot/topics/care-at-home/occupational-therapy/