Newbie needing advice

Mellie23

Hi all I’m very new to forums & don’t really know where to start - i’m 3 weeks post arthroscopy & still swollen & on crutches when I’m out & about. I was only told before arthroscopy (op done on 15th January) that my knee cap was eroding but just before going down to theatre I was told the erosion was due to arthritis & when I went to physio on Wednesday I was told I had arthritis behind my kneecap. I haven’t seen the surgeon yet (i’m due to see him on 27/2) i was told to put in my claim for Pip now. I’m back at work but struggling so don’t know if I should wait until I’ve seen surgeon or to do it now. I don’t know whether if i’m still struggling from surgery or if it’s the way it’s going to be from now on - what do you think- never claimed anything before now x any advice would be appreciated x

Mellie23

Do I need to be formally diagnosed by my consultant 1st ? The only ones that have mentioned arthritis is the surgeon & the physiotherapist:( I’m still taking pain meds from the arthroscopy - I feel like I’m in limbo

Mellie23

Thank you for replying (I forgot to say before - pain meds have played havoc with my brain )

jennand

Mellie23 wrote:

Thank you for replying (I forgot to say before - pain meds have played havoc with my brain )

It’s not the diagnosis that determines if you are eligible for PIP, it’s the way it affects your daily living and your mobility. Many people with arthritis manage ok, whereas it can have a profound effect on others. As mentioned, the Benefits and Work site is really helpful. I think it costs about £20 to join but you then get comprehensive downloads that walk you through the application process.
As an aside, it’s probably the surgery itself that is impeding you at present. It’s natural for us to think that we can just get up and go after having any procedure, but you have to just work with your body.

Mellie23

Thank you x i was told i would be off the crutches within the 1st 4-5 days but i still need them for walking back and forth to work nearly 4 weeks after athroscopy (which is a flipping struggle ) i'm really struggling to go up & down the stairs and I can't have a shower if i'm home alone because I can't get in & out on my own - i'm so frustrated :x it's going to be a hard slog this week as I have to work 3 double shifts on the trot because the boss is on hols (that means walking back & forth 9 times then be on my feet for nearly all the shifts ) i would have got other staff in but they can't open up, close up or cash up !! Sorry for ranting. I think I will wait until I see the consultant before I apply for pip because as mentioned it might just be the after affects of surgery that is making me struggle. Thank you & sorry again x

[Deleted User]

Hi Mellie23
please note that information on the Citizens Advice website is FREE so this is a great place to start your investigations. Is it possible for you to see your GP about some pain relief and possibly a referral to a physiotherapist? Sadly these things really can take time to heal. Don't worry about having a rant, feel free to rant away that is what this community is here for. We all need a safe place to let off steam with others who understand what we are going through.
Best Wishes
Sharon

Mellie23

moderator wrote:

Hi Mellie23
please note that information on the Citizens Advice website is FREE so this is a great place to start your investigations. Is it possible for you to see your GP about some pain relief and possibly a referral to a physiotherapist? Sadly these things really can take time to heal. Don't worry about having a rant, feel free to rant away that is what this community is here for. We all need a safe place to let off steam with others who understand what we are going through.
Best Wishes
Sharon

Hi I am already seeing a physiotherapist (only seen her once so far but next appointment is 15/2) I was given oramorph on 23/1 but only try to take that at night because it makes me feel weird [emoji23] i also have got co-codamol 30/500 x it is a battle to get in to see a doctor at my surgery but will try & persevere until I see physio next week. Right off i go to work - let the pain commence [emoji22] Thank you x

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barbara12

Hi Mellie23 and welcome to the forum
jennand is quite right its not your diagnosis but how it effects you..get to see has many consultants ..physios.. has you can , then you have letter to show the effects and also form your GP..like the mods have said there is lots of information about pip so you have a read..and good luck..and dont apologies for the rant it will do you good to talk to us..good luck with all and please let us know how you get on...I really do feel for you having to work like this..wishing you well with everything

Airwave!

Let us know how you get on, I'm still on DLA so it'll be interesting how you get on.

The changeover to PIPS seems to be creaking a touch but slowly edging onwards.

Mellie23

Hi all. All my long double shifts are finished (thank god coz i really started to struggle near the end [emoji21]). Just came back from seeing my consultant and it's not good news - stage 4 osteoarthritis !! Came out of the hospital in tears [emoji22] from being quite active to not being able to walk very far is horrendous. Consultant said i am extremely young to even be considered for a knee replacement but not even sure that would help anyway - i really don't know where I go from here [emoji22] i was told i have to have had this condition for 3 months before I can even apply for pip !!

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stickywicket

I can't help with the PIP but, as for the OA......it is very 'liveable with' as many of us on here can testify.

I suggest you read up on all the relevant stuff on the top menu then come back on here and ask about anything you wish. We all live with arthritis. It can change many things in our lives but not who we are.

Frankly, I don't know how many stages there are. I've never asked and never been told. I got all my replacement joints when the originals were knackered but even knackered ones have their uses. My right TKR was officially described thus about 5 years ago and is still holding me up.

Try to concentrate on what you can do and / or how you can do things not what you can't.

Mellie23

Thanks for replying x it was a real shock to be told stage 4 (the most severe & i'm only in my late 30's) especially since arthritis was only mentioned just before I went down to theatre in January - previous visits to the hospital (scans & xrays + being put into a cast over 80 times) no one has picked the arthritis up

dreamdaisy

When one thing is being looked for / considered other stuff won't be picked up because it isn't the focus: that's human nature. I have OA in both knees (I'm bone-on-bone and have been for years) and like Sticky I have no idea what grade mine is; I am twenty one years in so I guess it's reasonably advanced, it's also affecting both ankles and both hips.

Benefits-wise I put in a claim for DLA (Disabled Living Allowance) back in 2007, when I was troubled only by psoriatic arthritis and, much to my surprise, was given a lifetime award. I am still waiting to be transferred to PIP, I think that will be an interesting experience as one is assessed by the healthy who are not above writing fairy stories to deny claims (there are many threads about this on the benefits and working matters board). PIP is a benefit designed to enhance the quality of life, it will not provide sufficient funds to live on. I use mine to pay for our house, wheelie bin and window cleaners (all jobs I cannot do with ease), fuel to run my car and to fund the changes I need to make to life to make it easier. Work-wise I was very fortunate in being self-employed so was able to tailor things to suit me. I slogged on for seventeen years then, after a double carpal tunnel operation, decided enough was enough. I began arthritis in 1997 when I was 37, psoriatic arthritis was finally diagnosed in 2006 and then osteo in 2011. I've had operations on both knees but no replacements and healing always took longer than I was told it would: the rate of healing is an individual thing and dependant on factors which people forget about such as the level of fitness before the op. DD

Mellie23

Just been looking at the sample forms for pip & i am completely stumped ! I haven't got any sort of evidence from the consultant (i couldn't even tell you when all of this started as I have had problems for over 20 years). I am struggling to get back and forth from work (i don't drive) but really want to carry on working as long as I can but really don't know how long that will be - i am on my feet for over 8 hours every shift. I can't sit for very long because I seize up but when I am on my feet & moving around (albeit slowly & in pain) my knee swells up like a balloon - it's a catch 22 if i am fortunate to be awarded anything it will go towards taxis to & from work ect.

stickywicket

If you've had problems for over 20 years I think you should start with your GP who, presumably, has a record of your visits. He'll be able to say how long you've had arthritis though I confess I'm bemused that you could make it halfway to theatre without knowing why you needed an arthroscopy.

If you've previously had x-rays and scans of the knee did no-one tell you why?

I think it might be useful for you to ring our lovely helpline people. They can help you to sort things out. It all seems a little muddled to me and the less muddled it is the easier it will be to sort out a PIP claim.

Mellie23

Thank you stickywicket
I have an appointment on Friday with the physio - do you think she would be able to provide me with any details ? Because trying to get in to see my gp is like trying to knit fog They only told me i was having an arthroscopy to investigate & tidy up !! I've always had problems with my knee & was always just stuck in a cast for 6 weeks at a time - i have had numerous xrays & scans but no one has ever told me there was arthritis (not even if it was stage 1). For the last 17 years i didn't bother going to the gp or a&e because I knew what they would do so i would just strap it up & take pain killers.This is really getting me down now 😢

stickywicket

It would be a good start to ask the physio but I honestly don't know if a physio could help. At least, though, they might point you in the right direction for some answers.

I confess I'm not at all like you. I'm the biggest nosey parker. I want chapter and verse of all that's wrong or might be wrong and why everything is happening. Sometimes medics presume we already know when we don't.

I don't need or want details such as what stage things are at (hurting is good enough. I know they get to excruciating before much happens) or the details you need a degree in medicine to comprehend, but just what and why and where are my things, plus what happens next.

I hope you can get some answers. Please keep us in the loop.

Mellie23

I'll start with the physio & see where she leads me. I have got another appointment with my consultant in 6 months time :x i will try to get an appointment with my gp (fingers crossed i won't have to wait 6 weeks like last time ) i really try to ask questions but they seem to want you out asap.
Thank you x

petals

Hi mellie,
Your post resonated with me so much. The only difference being, I have RA and not OA.

I worked full time in the same sort of job that you do and I know very well just how hard that is.

The way I handled my situation was this......

Firstly I cut my hours down to 4 days per week, this meant I could rest up on the remaining 3 days. I tried this for a few weeks and then found I was still struggling, so I dropped another day.

3 days work and 4 days rest was much better but I was feeling it in the pocket. I applied for working tax credits and DLA. Fortunately I was granted both. (Lowest level DLA)

Things ticked along until the day arrived that I was told I had to change my DLA claim for PIP. I had the assessment and was told I didn't have enough points for PIP. I then had to appeal the decision. I had my appeal (conducted over the phone) and I explained that without my PIP and working tax credits I could not afford to live off my part time wages. I explained that although I was able to attend work 3 days per week, I was then unable to perform general living tasks unaided as I needed the 4 days of recovery time necessary for my continued employment.

I told the assessor that without financial help I would be forced to give up work completely and then be relying wholly on benefits. I also told her that this was the very last thing I wanted to happen, as I felt my mental well being was helped by my regular contact with my colleagues, and my physical condition would be helped by forcing myself to keep moving as my job required.

To my amazement, I received a letter a couple of days later to inform me that the decision had been reversed. I was awarded PIP which was back dated to the date of refusal. I was also able to continue claiming my tax credits.

Even though the claim procedure in absolutely stressful and difficult, I would still advise anybody in need to put in a claim. The worst thing that could happen is that they say no. Even then, you must appeal as many of these decisions are changed on appeal.

I don't know whether my story will help you.

Whatever you decide, I wish you luck.

Petals

stickywicket

The consultant would be best but the physio is a start and i do think our helpline people would be useful.

You don't have to see your named GP. Any in the practice will do. In my experience, if patients ask questions docs will answer but, if they don't ask, docs presume they don't want to know. And many people don't. Of course, we have to remember that a GP appointment is scheduled for 10 minutes so it's important to ask only the really important stuff. I hate taking Mr SW in with me as he has a tendency to ask about something trivial thus, in my opinion, wasting my appointment time. Worse still, he ends up discussing golf :roll:

Mellie23

stickywicket wrote:

The consultant would be best but the physio is a start and i do think our helpline people would be useful.

You don't have to see your named GP. Any in the practice will do. In my experience, if patients ask questions docs will answer but, if they don't ask, docs presume they don't want to know. And many people don't. Of course, we have to remember that a GP appointment is scheduled for 10 minutes so it's important to ask only the really important stuff. I hate taking Mr SW in with me as he has a tendency to ask about something trivial thus, in my opinion, wasting my appointment time. Worse still, he ends up discussing golf :roll:

Just been down to gp surgery to try & make an appointment - next appointment i can get is 3 weeks away [emoji36] and that is with any doctor - it's so frustrating x i am determined to get answers - i'm not going to bury my head in the sand x Thank for all your advice stickywicket x

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stickywicket

If you want something quickly it might be worth ringing them again and asking if you have a record of your visits re knee pain and medication prescribed. I don't know if they'd do this and I'm pretty sure there'd be a charge if they did but, if time is of the essence, maybe worth a try.

Mellie23

petals wrote:

Hi mellie,
Your post resonated with me so much. The only difference being, I have RA and not OA.

I worked full time in the same sort of job that you do and I know very well just how hard that is.

The way I handled my situation was this......

Firstly I cut my hours down to 4 days per week, this meant I could rest up on the remaining 3 days. I tried this for a few weeks and then found I was still struggling, so I dropped another day.

3 days work and 4 days rest was much better but I was feeling it in the pocket. I applied for working tax credits and DLA. Fortunately I was granted both. (Lowest level DLA)

Things ticked along until the day arrived that I was told I had to change my DLA claim for PIP. I had the assessment and was told I didn't have enough points for PIP. I then had to appeal the decision. I had my appeal (conducted over the phone) and I explained that without my PIP and working tax credits I could not afford to live off my part time wages. I explained that although I was able to attend work 3 days per week, I was then unable to perform general living tasks unaided as I needed the 4 days of recovery time necessary for my continued employment.

I told the assessor that without financial help I would be forced to give up work completely and then be relying wholly on benefits. I also told her that this was the very last thing I wanted to happen, as I felt my mental well being was helped by my regular contact with my colleagues, and my physical condition would be helped by forcing myself to keep moving as my job required.

To my amazement, I received a letter a couple of days later to inform me that the decision had been reversed. I was awarded PIP which was back dated to the date of refusal. I was also able to continue claiming my tax credits.

Even though the claim procedure in absolutely stressful and difficult, I would still advise anybody in need to put in a claim. The worst thing that could happen is that they say no. Even then, you must appeal as many of these decisions are changed on appeal.

I don't know whether my story will help you.

Whatever you decide, I wish you luck.

Petals

Hi Petals
When I first started my job (15 years ago) i was working 36 hours but over time due to the economy my hours were reduced - i'm now only working 20.5 hours over 3 days ( 1 is a double shift, 1 is only 4 hours & the last shift is 8.5 hours) i have asked to change shifts but the boss isn't willing to do this (as his shifts will have to change !). I feel like they are trying to get me to quit but they will have a fight on their hands - i love my job (sometimes). It's not so much the job i struggle with, it's getting to & from work - the double shift is a split shift [emoji21] We don't get any tax credits ect so it's only our joint wage coming in (both of us are on low wages). I am trying to get an appointment with a gp to see what my options are but failing miserably x
I really want to carry on working (i would go crazy being at home every day) - i have 4 rest days same as you. If I get anything from pip it would go towards my transport to & from work.
I'm trying to get as much evidence as I can before I apply for pip.
Thank you - i'm happy someone understands my situation not just the arthritis x

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Mellie23

stickywicket wrote:

If you want something quickly it might be worth ringing them again and asking if you have a record of your visits re knee pain and medication prescribed. I don't know if they'd do this and I'm pretty sure there'd be a charge if they did but, if time is of the essence, maybe worth a try.

I'll pop in the surgery tomorrow as it's only across the road from where I work & ask the (very unhelpful) receptionist - i'm now struggling to keep my eyes open (pain meds have kicked in).
Thank you x

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dreamdaisy

It can be so frustrating dealing with medmin (medical administration), we've all had a taste of that in our times.

Mellie23

dreamdaisy wrote:

It can be so frustrating dealing with medmin (medical administration), we've all had a taste of that in our times.

The ones in our surgery are a nightmare (i call them the pitbulls) [emoji23] you've got to get past them before you can see a doctor x

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