War and Peace from a struggling 30' something

Rewter

Hi all, Just a little ( ok, a lot ) back ground as to where I currently am and a few questions I would like to ask. Hopefully I don’t come across in a bad way as I have really struggled to accept I have problems and need help.

I am 36 years and was diagnosed with arthritis in both hips when I was in my early 30’s. Apparently this was a result of perthes disease when I was a child. I had suffered a lot of stiffness and pain since my early 20’s but ignored this until it became too much of a concern. A few consultant and GP visits resulted in me taking a concoction of prescribed anti inflammatory and pain killers. Due to my young age, hip replacements was not an option as it would be detrimental to my mobility in later life. I was advised to pursue a Blue Badge to get my walking distance down and try to preserve what little mobility I had as well as reducing the amount of pain I had to go through. I was successful in getting this.

However, being a young and proud man, I did feel very conscious when people was frowning and commenting on this young bloke parking in these spaces. I don’t like confrontational situations but its very hard when you have people questioning you in public for parking in disabled spaces before you even get chance to get out of your car. What, young people don't have medical problems? It made me regret using it at times I ended up just relying on lifts and been dropped off at the doors.

Medication wise, the diclofenac made me feel ill resulting in me passing and vomiting blood. This resulted in another problem as I my stomach became damaged resulting in me going to the hospital every few months to have cameras down to see if things got any better.

Bottom line, told the GP I was taking no more pills and that I would not renew my Blue Badge and would persevere with the pain and mobility issues some how… a wrong move that I am now paying the price for. The words young adn stupid spring to mind :roll:

So, fast forward a few years to today. My hips are even worse, the pain and stiffness causing even more problems. I can no longer walk the short distance to my parents house and the local shop round the corner. These are all a very short walk from my house. I car share with my Mrs but I have had to make sacrifices and sell a few things to buy another car just so I can get about and have some independence on days when she has the main car for work. To make things worse, the past few years have seen the exact symptom in my hips showing in my knees and will I be at the doctors next week to look into this as the pain is getting to much. I have a good idea what he is going to say though the x ray will be conclusive. I am now struggling that much that I will take whatever medication he throws at me irrespective of it potentially putting me back to visiting the hospital every so many weeks. I guess now I have accepted I really need help.

So a few questions if I may.

1 – In the past few years, I have found I get an accute pain that feels like severe cramp in my toes, mainly big toe when trying to walk. Obviously this makes life even more difficult. Does anyone else get this? I limp a bit with the kness and hips but this can pretty much grind me to a complete halt as it’s a compounded problem of feet, knees and hips. Could it be circulation problems brought on by the arthritis. I will discuss this with the GP.

2 – As I have had a Blue Badge before and my symptoms have naturally got worse with wear an tear, would I most likely receive another if I went down this route. I have tried to squeeze myself out of the car in tight spaces but this is physically impossible for me and twice now I have fallen trying to do so with me sliding under the door and banging my head on the sill . Its easier to just get dropped off but I lose my independence in doing so and have to rely on others.

3 – Am I wasting my time even considering the DLA option. A few people have questioned why I have made sacrifices to buy myself another car to give me mobility and better quality of life when others with arthritis have gone down the DLA route? When I originally got my Blue Badge, I was wrongly a little embarrassed when the lady mentioned I could potentially claim additional benefits, I refused to even have the conversation and made my excuses to leave.

Any advice welcome.

stickywicket

Hello rewter and welcome to the forum.

I'm sorry about all that's gone wrong in the past. If it's any consolation, OA (which is what I presume you have) is only treated with paindullers so, by not taking them, you've not made your arthritis any worse, just made it more painful.

Believe me, Blue Badge stories abound on here and you are by no means alone in feeling you are being watched, monitored and disapproved of when using one. I'm afraid the first requirement for arthritis is a very thick skin I know they are difficult to come by (BBs, not thick skin though, come to think of it.... :roll: ) but, if you had one before and have got worse rather than better, you should be in with a good chance.

I can't help with the DLA thing as I've had it for years and I'm not up to date.

There is more to pain relief than the dreaded anti-inflammatories (which messed up my stomach too, though not as badly as yours). There are patches and there are Pain Clinics to help you cope and, if your joints are shot to bits, yes, there are replacement ones. I had my first TKRs at 35 and I still have one of them 31 years on. The other was replaced a couple of years ago.

Go for the BB and the DLA rewter but grow that thick skin first. Good luck!

dreamdaisy

Hello Rewter, it's nice to meet you and I am glad you have found us. I can't stop for long as I have to work in a moment (I'm a self-employed tutor) so I cannot give a long answer but I do feel for you in your current situation and I can understand exactly why you have done as you have in the past.

I began my auto-immune arthritis aged 37 and over the years (I am now and agéd crone of 53) the damage that has caused has led to OA in my knees and ankles. I would be lost without my BB and, as Sticky so wisely said, you do need to have a thicker skin to be able to ignore the damning looks from pensioners as you swish into a special parking spot they seem to regard as exclusively theirs. They soon switch expressions though when they see my crutches or - lately - the four-wheeld rollator I now need to get about, and my splints.

I am on a cocktail of nasties for the auto-immune stuff and cocodamol for the other. I receive higher-rate mobility DLA (and have done since 2007) but I am aware that the system is changing soon to a PIP scheme (Personal Independance Payment I think that means) so I am not sure about my future with that. The only thing you can do is apply for both. Be prepared to gain a BB and to fail the DLA - that seems to be par for the course at the moment. Right, I have to go but I'll be back later.

Welcome aboard, I hope we can help with encouragement, information and support. I wish you well. DD

Rewter

Cheers guys

You are right, its generally the older generation that seem to go out of the way to 'police' these disabled spaces.

Pain management is something I have always been pretty good with but everyone has a threshold I guess.

I will see how things go with the docs and decide if to re-apply and get another BB. Not sure about the DLA as I see a lot of people on here rejected. I know a couple of people who have it and they both said I appear to be in a worse postion than them but I believe they have really clamped down on criteria.

earthspirit

hi without a doubt you should attempt to claim DLA at least for the mobility aspect. thw walking test confuses people as the entitlement says for people virtually unable to walk but this includes "without pain".

i can walk a bit further than the limit stated but my extreme disability is perfectly obvious from watching me trail my sore leg along and perfectly obvious i am in extreme pain when walking.

the system has been scammed for too long and by too many and each with a gold star for acting, that the checks they do now are awkard and confusing.
make an appointment with welfare rights officer at local council and get them to write down or tell you the correct words you need to use to describe exactly what you suffer from - on reading what you have written you do indeed seem to merit some help. you dont appear to need the care component so apply only for the mobility one. this then shows "them" that you are not out for as much as you can get.

i know with my own council in london you have to go for a medical if you are applying for a blue badge and dont receive higher rate DLA.

you do have to turn a blind eye to the well dressed obviously loaded rich old people who give you dirty looks for parking in these spaces. now that i am old (52) i do often challenge their right to use the badges too. i sometimes even think that being old = the wisdom to know all the scams. oh im such a cynical bitch but i blame this on the pain of the RA.

even tho you do get higher rate dla for mobility it is not just so simple to get a car on motability (where all your benefit is paid direct to the charity)

ive just been through the process myself and whilst some sail through with no checks at all, some, like me, seemed to hit every brick wall going.

i might be wrong in saying this but feel that if you can pass the test to get the blue badge then you should also pass the test to get higher rate mobility. (i do however know a lady who has had blue badge for years simply on the fact that she is fat. she has no medical condition at all)

good luck with whatever you do and apply for and just think, there is no harm in making that application for dla. they do tell you why you dont qualify if you get rejection letter and there are rights of appeal if you feel they got it wrong. dont expect any quick access to this extra cash in your pocket tho!

earthspirit

hi without a doubt you should attempt to claim DLA at least for the mobility aspect. thw walking test confuses people as the entitlement says for people virtually unable to walk but this includes "without pain".

i can walk a bit further than the limit stated but my extreme disability is perfectly obvious from watching me trail my sore leg along and perfectly obvious i am in extreme pain when walking.

the system has been scammed for too long and by too many and each with a gold star for acting, that the checks they do now are awkard and confusing.
make an appointment with welfare rights officer at local council and get them to write down or tell you the correct words you need to use to describe exactly what you suffer from - on reading what you have written you do indeed seem to merit some help. you dont appear to need the care component so apply only for the mobility one. this then shows "them" that you are not out for as much as you can get.

i know with my own council in london you have to go for a medical if you are applying for a blue badge and dont receive higher rate DLA.

you do have to turn a blind eye to the well dressed obviously loaded rich old people who give you dirty looks for parking in these spaces. now that i am old (52) i do often challenge their right to use the badges too. i sometimes even think that being old = the wisdom to know all the scams. oh im such a cynical bitch but i blame this on the pain of the RA.

even tho you do get higher rate dla for mobility it is not just so simple to get a car on motability (where all your benefit is paid direct to the charity)

ive just been through the process myself and whilst some sail through with no checks at all, some, like me, seemed to hit every brick wall going.

i might be wrong in saying this but feel that if you can pass the test to get the blue badge then you should also pass the test to get higher rate mobility. (i do however know a lady who has had blue badge for years simply on the fact that she is fat. she has no medical condition at all)

good luck with whatever you do and apply for and just think, there is no harm in making that application for dla. they do tell you why you dont qualify if you get rejection letter and there are rights of appeal if you feel they got it wrong. dont expect any quick access to this extra cash in your pocket tho!

hileena111

Hi
Welcome to the forum....glad you found us.

I'm older than you but have OA which I assume is what you have.
I would say go for the Blue Badge...they are getting harder to come by now but you can only try {harder because so many people mis-use them}

I've had one hip replacement and OA in my back as well. Mobility isnt good and like you I need a decent size space to park and get my rollator out of the car.

DLA...sorry I cant help there....I dont get it but judging by others on here once again I would say go for it.

I think it was Sticky that said about thick skin when you use a BB...that is so true.

If you get any anti inflammatories like diclofenic, naproxen, ibroprufen etc etc you should have a stomach protector prescribed as well. Omneprozol is one of them but there are others. I didnt realise this until i joined this forum and read about them and asked my GP to prescribe them for me. I'm with a new GP now and she automatically prescribed them because I'm on naproxen. There are other meds apart from diclofenic....I'm no doctor but different ones suit different people. We all react differently to certain meds
Good luck with your appointment and let us know what happens
Come on and chat anytime
Love
Hileena

Folara

*waves hello* and welcome to the forum.

Can't add much to what everyone else has said tbh. Definitely go for the DLA and don't fill in till you got the tips on here as a few of us are old hands at completing the forms, the right way. As for the BB, I love it when people give me 'the look' when I park. Being only 45 and not a fragile old lady really seems to rile people, then they see the crutches or the wheelchair and have to look away as I grin knowingly at them or wave my BB at them. Asking them if they have a problem is quite good fun too, really puts them in the spot. So don't let the morons annoy you, have a bit of fun with them (I will probably get told off for saying that hehehe).

Fols x

Rewter

Thanks again all. Yes, had 2 different types of stomach lining tablets to try but both made me feel I'll. Omeprazole was one of them.

I guess I will see how I go with the knees and foot and take it from there. Will let people know how I get on with the docs next week :-)

Rewter

Any one had any experiance with the first question where arthritis in parts of the body effects other parts. In my case, acute pain with toes cramping up though arthritis is in my hips / knees?

dreamdaisy

In my case that's all the time, Rewter. When we feel pain in one joint we try to use that joint differently to ease the discomfort. This then throws other joints out of kilter and they end up twanging along in sympathy. Arthritis does spread from joint to joint but using affected joints awkwardly is a factor. DD

stickywicket

Definitely Rewter. When one bit hurts we try to 'spare' it thus creating problems elsewhere. Sometimes we overuse one side to compensate for pain in the other: sometimes it's just that we screw ourselves up against the pain and create muscle tension elsewhere.

Rewter

I guess we will see then. I am convinced that its arthritis now in my knees but the toes has got me. I do get sharp pain and stiffness in them and have put this down to circulation. A doctor I certainly am not though so do you think its worth pushing for an X-ray of my toes / feet?

stickywicket

I'm always inclined to go for the 'good chat' first to see what they think and why they think it. At the end of the day, if it is arthritis, nothing much will change (as it'll be the same meds) unless you're in need of special insoles to help in which case a referral to an orthotist would be the start.

Physio might help too but I guess that would be the case whether it's arthritis or circulation problems.

My advice, especially if you have a good relationship with your GP, would be to see what the doc says and maybe ask him if he thinks X-rays would help.

Rewter

Good advice, thankyou.

Might as well take this time to discuss the aches across the middle of my back and the bottom near my spine if I go beyond my abilities.

I will mention the physio aspect too. It was this that actually highlighted my problem. After numerous visits to the physio, things actually got worse and I was accused of not doing my 'home work'. Being adamant I have tried to to what I have been tasked with and that it was making even worse, the guy called my bluff and recommended me for X-Rays which ultimately highlighted the arthritic problem. Never went back after that.

Physio was not discussed as an option by the Consultant but it may be now. In our first consultation, he did manage to scare me in saying that one of the solutions could have been fusing my worse leg into a fix position to save any more wear and tear though this was disregarded due to having it in both hips. Sounded very extreme!!!!

stickywicket

I can see that the physio would make stuff worse if, at that time, the arthritis was an unknown quantity. Physio is only useful insofar as it’s specifically for the patient’s needs. There’s no ‘one size fits all’. Many people find swimming helpful (the water supports you) and cycling (non-weight-bearing) but a physiotherapist who is fully aware of your problems would be the best to advise. Your GP can refer you. It doesn’t have to be the consultant.

I seem to remember hearing of knee fusions long, long ago but, now that TKRs are so successful, I think they are only used as a last resort to relieve pain.

Rewter

Well, today I had my appointment. Not a lot to update really which is a disappointment in itself. Only update is I have received some stomach lining tablets and 500mg Naproxen. Back when I used to take tablets, it was Diclofenac and codeine phosphate so not sure how these compare. :?

The Docs notes system was down so I think he was taking things a bit cautious but has advised if no difference from this medication, to come back in a few weeks. Also, he has sent me for blood test next week to see if anything else is happening due to pain in my knees and toes. I was really hoping for an X-Ray of my knees but this was not offered. However, when I go back for the blood test results, I will be pushing him to do this as if it is arthritis, then I really have got an issue with both my hips messed up.

He did mention that if I decide to go back down the BB route, he will support this which was good news. Once I have got the blood test and possible x-ray sorted and have firm results what exactly is wrong, I will most likely apply for my BB. I just want clarity so that it strengthens my application to get one.

He did seem to think the other pains could be a result of my limping which could have caused other problems but I guess we will find out over the coming weeks.

bubbadog

My dear chap, you have every right to have a blue badge! You shouldn't need the ok from your G.P! We would all encourage you! Maybe when he's seen the results of blood tests he will send you for x-rays and maybe scans!

dreamdaisy

Oh dear, Rewter, I feel for you. It can take a deal of time for us to get 'sorted' - I had five years of various doctors telling me that my fat left knee would sort itself out: oddly enough it never did.

I'm glad you have a protector (omeprazole? Lanzaprole?) as nap etc are pretty harsh on the guts. I find the diclofenac helps me where nap didn't but we are all different. I will keep my fingers crossed that things start to ease for you soon, please keep in touch and let us know how you are getting on. DD

Rewter

I was hoping to get my hands on some pain killers like before as on a bad night, I might stand a chance of getting some sleep

I guess I am slowly working my way towards things. When I was first told about my arthritis back in 2005, I did not give the application for a BB a second thought and went straight ahead and did it but after the things mentioned in my original post, it did put me off and now has me acting more cautiously. Thing is, I now have 7 years extra ware and tear on top. I got the GP involved just incase they refer to them when I apply for the BB. I just want to understand what is wrong with my knees as I believe that if I do decide to apply for mobility DLA, it would carry more weight if I could confirm that I actually had a documented medical problem rather than me just saying that I have arthritis but something in my knees but not sure what? For the sake of just a few more weeks, is it not worth waiting to say that I have arthritis in both hips but I also have other issues effecting my mobility in the form of XY or Z in my knees and XY or Z in my feet or at least confirm that my Arthur has caused the other issues?

I am unsure :?

Helenbothknees

Definitely try for DLA. I didn't think I'd get it but thought it was worth the time spent filling in a form, and I've got higher rate mobility and - unexpectedly - lowest rate care, I think because I said I had difficulty with stairs, though not sure about that. You're disabled so you're entitled to it! And don't worry about what others think; it's their problem, not yours, so ignore them - yes I know that's easier to say than to do, but it needs to be said.

Rewter

Well, today was bloods day so got myself an appointment for 2 weeks time to catch up on the results. Again, they are having problems with the system and I have asked the nurse catagorically, what Arthritis do I have. Its wear and tear so they can summise its OA but apparently the consultant letters on the system disappear after so many years onto an archive so they cannot confirm. It just said arthritic issues........very poor show!!

How are people supposed to help you if they cannot confirm your medical history? I guess I should have paid more attention at the time but all I heard was Arthrits, hip replacements and fusing.....it was just a blur from then on as was in a bit of shock :shock:

How should i tackle this. I seem to be able to tell them more of my medical past than they can tell me. As per my original thread, I have gone years avoiding this and keeping away from the docs so my history will have had a whole in it. Surely it should all still be on there as OA will only get worse and since then, I have had over 7 years extra wear and tear going on. Is it worth demanding more XRays and seeing a consultant?

After discussing the pains in my back, knees and feet, one of the things they are testing me for is RA so I guess we will find out soon enough if this is an additional problem.

bubbadog

My dear Andy, you just get through the blood taking, let the Doctor's secretary worry about finding your history and you just worry about being pain free!

stickywicket

Your notes should be somewhere in the system, Rewter, although I never expect anyone to remember anything about me (Why should they? They have loads of patients on their books and I'm just one) and always tell them what I think may be relevant. I’m not sure where your notes have disappeared. Is it at the GP’s end or the hospital’s? Your local P.A.L.S. might be able to help.

Rewter

Its at the GP's end. I can't expect them to remember everything but surely if they are to treat a patient properly, they would need to have reference of whats been going on? Not every patient will remember every detail of what has been said or what medication they have been on historically.

They did have some information, its just that it was all sketchy compared to what they had a few years ago. I guess I am a bit concerned that if I apply for a BB, I do not have all the information on file that was there when I previously applied and received one.

Am I being a big girls blouse

stickywicket

Rewter wrote:

Am I being a big girls blouse

No, definitely not, Rewter. Don't even go there It’s just that I’m not convinced that them having the notes amounts to much. After 51 years of RA, my hospital notes alone come in a folder that is about 6” thick. (I think I've been responsible for several bad backs :roll:) No consultant has time to read through that lot before an appointment. My GP’s notes are on the computer screen but, again, I have to keep reminding them which bits of me were replaced when, that I can’t tolerate some anti-biotics etc etc. In any case, for BB application, I think they’d be far more interested in how you are now than how you were then.

It might be that they do have the info but condensed into note form. Or maybe your original BB application is around in some offices somewhere. I still think P.A.L.S. would be the best people to advise you on what to do about this. You can phone or email them.