I'am a 37 year old man with inflammatory polyarthropathy and ostio arthritis of my spine and neck

[37yearoldoap]

I am a 37 year old man with inflammatory polyarthropathy and ostio arthritis of my spine and neck i get severe pain in my ankles knees and hips but the pain is worse in my ankles can i have my feet amputated on the nhs because i don't know how much longer i can deal with the pain.It is impacting on my life my wife's life and my children's life and i just don't know what to do next apart from something really stupid which would be very selfish and would destroy my family as they love me very much but i just can't imagine living the rest of my life like this could someone please tell me if it would be possible to have them removed

[Hidden]

Hello

BOB here

You have arthritis in five joints, with regards to them removing foot and ankle I cannot see them doing this on the NHS,in fact I cannot see them doing this in a private clinic. This seems heavy handed.and do you really feel your family would not stay or tolerate your condition, all seems very heartless and not understanding

I understand that there has been some progress in replacing the ankle joint, although I do not know what the situation is at this moment of time. Your GP would keep you informed if this is possible

You seem to have not actually thought through treatment and medications. Have you thought about going to a PAIN CLINIC, they would assist in pain control, the use of TENS and relaxation techniques, They would also keep you abreast of all types of treatment that may be possible. that helps your condition (s). Also courses.

You do not really seem to talk about the GP has He suggested, any treatments He is in partnership with you to supply treatments associated with your condition and He should be able to set your mind at rest and assist.

If you are having problems at home it may be possible to have an appointment with an Occupational Therapist, she /He would be able to assist in any equipment that would make your life easier, not all is to do with a wheelchair.

My condition is Arthritis of the tendons and surrounding shiefs also I have arthritis in the spine, neck, shoulders, , hips and knees I also have arthritis in ankles and feet. Osteo Arthritis of both knees and hips. Now I have been like this now for thirty years, I was younger than you when I came down with this condition. My life is full, I have a Collie dog who is as fit as a lop and keeps me busy, also I do gardening in restricted fashion and I have been married for over thirty years and we both have lived a full life of overland travel between Venice and Peking, Disability only stops you if you let it, although you will find you do possibly become a Reactive Depressive, although again life is what you will make it. My wife has never said that I am a waisted bum on a seat that sits there unshaven for days on end.picking my nose.

Life is what you make it I recommend you visit your doctor and start to plan your treatments and future life choices, good luck, keep informed. Remember you are not as bad as some, that you will meet in the NHS.

I also get involved in the GP surgery on the PATIENT PARTICIPATION GROUP, and NHS HEALTHWATCH where I specialize in Mental Health and Dementia

BOB

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[asborne in reply to Hidden]

Hello borderriever, I noted that you do not mention anything about pain medication that your condition may require. I injured my foot in Jan this year which is still causing problems and restricted movement of foot. Also now has caused back and nerve troubles and possible arthritus. Went from paracetamol to co codamol and now managing on Tramadol. The pain dr suggested spine inj., but no explanation. Awaiting MRI report for possible solution of foot damage then I hope spine will settle down due to less strain on back. I refused spine inj so no longer given appointment at pain clinic as gps medication ok for now. Able to use a three wheel walker outside thankgoodness as am not inclined to sit back, stairs are a problem but can hobble about once downstairs. You have done extra well so I would be interested in what type of medication has helped you if you would care to say. As am elderly another 12 -15 ys might do me so eager to get foot sorted and of pain capsules. You are really tough on the whole I have been lucky.

[Hidden in reply to asborne]

Hello BOB here

Many people are all on different medications for their pain . Chronic pain is a very subjective problem that will be felt differently in all cases.

My medications are Tramadol 50mgx8 daily, my nuro pain is covered by Amytriptalene at 75mg nightly My NSID are Celebrex at 100mgx2 The nuro medications main us is Depression with a contra indication for nuro pain. I use aVTENS machine, that I also use as an EMS.

Also take Citalopram for depression because of my conditions to change moods.

Also use a hydro bathroom desgned for disability as I need to use special cremes.

The above is all different for most chronic pain sufferers non will be the same I have taken many courses with regard to pain management so I am trusted to manage my doses, when required. We all use walking aids when required

Also I use relaxation techniques, Maxwell and Alexander.

BOB.

[37yearoldoap]

I have been receiving treatment for the last 3 years i have had this for the last ten years but i used cannabis to self medicate i was a hod carrier and could work extremely hard i no longer smoke that because of increasing paranoid episodes i never said that my family don't understand but i can see that my wife is very very tired because it is like looking after another child sometimes we have four beautiful girls and i worry how my illness will affect them in the long term. I have tried steroids which is what i am taking at the mo i cant take methertrexate because i failed a liver function test but i do have 75mg fetanyl patches which only helps a little . i saw a man on this morning who chose to have he's hands amputated because of severe gout so i don't see why my idea would not be accepted i have to wonder how you managed to afford to go to all the wonderful places you have been to as we are struggling to put clothes on our children's backs when i was working we would have two holidays a year we are now down to zero which makes me feel even more worthless.I have been diagnosed with severe depression my doctors do understand its just a shame the government does not.

[Bananas5 in reply to 37yearoldoap]

i would go steady on the accusations about your neighbour gets DLA and yet is only obese. I am registered blind but don't look it. yet my medical records show otherwise and this is how DWP make their asessment. Unless you have access to her medical records best you say nothing. When you failed your asessments did you poduce GPs and consultants leters about your condition? Did you take someone with you and di you have your inteview recorded> And for the record Atos are contracted to DWP and it is they who make the decisions on s = not Atos.

I am married to a chronic pain sufferer who was only 36 when he broke his back. A proud youn man serviving in the Royal Navy. It is hard when you realis you can nev work again or do half the hings you did but life is a wonderful place. Like Bob we travel, laugh, cry, have 2 Colles and 3 hens. Amm gve him pupose and meaning. Think about what your wife is going through.too and don't wallow in self pity. It will eat away at you and you will become bitter.

Get to the pao clinic- they are wonderful people there who know how to help.

Good Luck and never give up.

pat x

[37yearoldoap in reply to Bananas5]

Its not accusations she is a freind of my wifes which infuriates my wife because she see first hand what my condition does to me and yes i produced all the evidence from my gp and rheumatologist and when i asked for there assessment to be sent to me they said in it that i produced none they are liers and i have proven so on 3 separate occasions i even recieved a written apology the last time but still based the dla decisions on the very first medical i had in hine site i should have ask for it to go to a tribunal but i done what they hope everyone does and gave up but not this time i will not stop fighting

[Hidden in reply to Bananas5]

Hi Paton, It is very difficult without the abilities needed to fight through problems, especially when your living on a low budget, and I don't know what I would do if my finances changed slightly even, and pain is so very much worse when you feel trapped by it, and these medications only bring further issues, so it's a full time job learning what you have to do what's best and doing it to keep pain at bay or in balance with the other psychological problems you gather, I wish I had your state of mind Paton, I really envy you that, maybe if we could bottle your state of well being we'd all be a lot better off, but I must say that without a decent amount of money to live with then you only are at the mercies of your ability to pay for your needs, and I know what 37yearoldoap feels like with limited means and limited abilities to change your life , so I wish 37yearoldoap all the best , and you Paton, though you seem to be blessed with the good nature needed to make the best of your lot, best wishes all

[37yearoldoap]

sorry my name is terry thank you for your reply bob

[Hidden in reply to 37yearoldoap]

Hello Terry

The ATOS are governed by a stringent points system as I understand, so each problem you have will be governed by this system. Non of use know how this system works as such. That is why so many disabled end up at the CAB for assistance in filling the forms in.

Also when you are approached to fill in the forms I understand at this time your GP will be contacted also the specialists you see. Not only that generally an Occupational Therapist may contact you to see how you are getting on in your life. At this time generally your partner will be in the room with you both and will be allowed to take part in all discussions. Also at the same time will walk around the house to see if adaptations are required that will help you get around. and bathing

Sometimes I understand after these checks are done some patients will not need to go into ATOS as the points are over the requested level.

If you are called in again I understand , even at that point you can get through for the benefit If not an appeal can be entered into. Again if you need assistance again CAB can assist with the appeal. Some legal eagles, solicitors can help with the appeal. From 2015 I understand that the system is going to so much higher than it is now.

This is what I have heard when in aand around hospitals from patients. So if this is incorrect please do not blame me.

Good luck

[Hidden in reply to 37yearoldoap]

Sorry I made the same mistake Terry, best wishes

[Hidden]

Hi Terry,

I've just seen your post! Firstly I'm glad that you acknowledge that by doing that stupid thing is selfish and would destroy your wife and four girls! It might seem like an easy way out for you but what you would leave behind would be awful and something that your family would have to live with forever. However for you to be thinking like that things must be bad at the moment for you. I feel similar actually as I have two children, my youngest was only a few months old when I had an accident that left me with complex injuries and a painful disability. But our kids love us and need us regardless. As long as you talk to them and explain your pain and limitations! It sounds like you really need to tell your wife how you feel too ( if u haven't already ) also you need to find some pain relief that makes the pain more manageable - that's the key really! Once the pain relief is sorted you life will become alot easier. Never settle for something if you are not happy. I've had to scream and shout at my Gp and many consultants in the past to get what I need! Pain management clinic is brilliant! Can DLA and ESA not offer you some financial help and speak to citizens advice as they might have some useful info for you. Right now you need to concentrate on getting yourself in a better place, physically - pain wise and emotionally. Stay strong. We are all here to offer support.

Elle x

[37yearoldoap in reply to Hidden]

hello Elle i have been on esa for 3 years now and applied twice for dla and been denied i have had 3 medicals with atos and each time when i have received there report they claim that i am fit for work even with all the medical evidence i even went once with my right ankle 3 times its normal size and they put in the report that it was perfectly normal when they never even looked at it 3 times i have proved that they had lied through there teeth in each and every medical i even got a written apology i have now applied again which is for the new pip payment and have to go for yet another assessment which i would rather bypass and just go for a tribunal that way they can see for themselves just how bad i am i do not trust atos as far as i can chuck them its so frustrating there is a lady at the back of our house that has to cars trough dla for just being obese its a joke its not as though i have not worked hard i was a builder / hod carrier and worked extremely hard the building trade is all i know but i know i will never be onsite again and i miss that i could not even sit through my child leaving school play which was on for 45 minutes my wife and children do understand but i can't help but feel guilty that we cant take them anywhere because we have no car my wife drive's but the engine blew up on our car and we just cant afford to buy another and we live in the middle of nowhere with no bus route i'm not a person that wines and moans but when life kicks you its uselessly pretty bloody hard its just been one thing after another if i don't get accepted this time we will have to face a winter without heating as we have oil here and that's very expensive because of the benefit cuts what little money we are left with we will have to give to the council for rent i just feel like screaming

[37yearoldoap in reply to 37yearoldoap]

ps as you can see my grammar is terrible so an office job is out of the question

[Hidden in reply to 37yearoldoap]

Hello BOB here

Terry you want too see my spelling,am a firm believer in spell check,

All the best

BOB

[docnai]

i knew someone who had his left leg amputated, all went well but he says he was still in pain from his left leg, and could do nothing about it. strange but true..............take care

[Maria199]

Hi I have some thing like u inflammation ostioarthritis in my neck to and in knees I know sever pain is it i have in my hands to now so u can asked your doctors to refer u to mc ts pain manejement. Trying if thas workes for u I for me I been trying all don't help it's so bad we can't even walking staying home most the times I hop u get the help u need

[teadrinker]

I sympathise with your predicament. There have been times when I would happily have had my head removed in order to get rid of the facial pain I suffer from.

But pain is a strange thing - people who have amputations can still sometimes feel pain in the area where the amputated part once was. I know this sounds strange but it's called phantom pain. I know of people who have had healthy teeth removed in order to try and get rid of pain in the mouth but it hasn't made any difference. It's quite likely that doing something drastic like amputating your feet won't change the pain - and you would be without your feet - they might seem to be a huge problem for you now but not having them at all could create further problems with getting about.

Pain management clinic has helped me stop wanting to take my head off - it took a long time to get things sorted out. Ask if you can be referred on.

Good luck

[37yearoldoap in reply to teadrinker]

I hear what your saying but i'm not getting about now the more i do the worse it gets i now know when i'm going to be bad because my legs and arms go numb and tingle always when i go to bed so i end up virtually not sleeping i also cant lay completely flat because the ostio arthritis traps a nerve in my spine so i just stay down stairs in a reclining chair sitting there waiting for the sun to come up its very depressing i have always been very active loved going to work and fishing now sold all my gear because i cant even do that the love of my wife and children is whats keeping on this planet i just wish the government would stop screwing us over and help us they were happy all the time they were taking sometimes over 300 pound tax and insurance from me a week i wish they would stop trying to force my wife into a dead end job that won't pay enough for us to live on she needs a bloody medal and not that sort of crap we have no car at the mo because we have been screwed over by a local garage it went in with a minor water leak and came back with a blown head gasket and no local bus service i try not to get down but it is bloody hard not to hopefully we will turn a corner soon and see a bit of light at the end of the tunnel fingers crossed.

[37yearoldoap]

Talking to people is defo helping so for that i thank you all very much.

[asborne]

Hi terry, You sure are having a rough time. It hard for some to believe how tough it is for some to get assistance. You sure have tried your best. Its really awful how some have no trouble getting the correct care and assistance. doesnt make sense after battleing to get some understanding you fail to get through. All you can do is keep on persisting. Lets hope some of the advice given has given you help. Not at all pleasant to have loads of pain, I am fortunate to be elderly before needing pain medication but am manging on Tramadol luckily. So Terry carry on persisting and lets hope for better results soonish.

[37yearoldoap in reply to asborne]

Thank you joining this website has empowered me believe it or not i'm even more determined to fight them all the way i just wish i could bypass all the crap and go straight to a tribunal if that would of happened at the beginning A /my family would not have gone without so much and B/ the stress would not have been half as bad it has been a real eyeopener to here so many caring comments it has been lovely and really has helped fingers crossed everything falls into place from now on.

[welshnut]

Hi terry,

You really do sound like you are in a desperate spiral of stress, depression and pain and that does make it hard to see the light at the end of the tunnel.

The most important tool I found in my armoury was self managment. Noone sadly is going to do it for you, so it is time to draw a line and look at how you are going to go forward.

First of all you say you use a wheelchair, who provided the wheelchair? if it was not a medical proffesional ask for an appointment with the Occupational Therapist, they will assess your need and make you an appointment with the wheelchair service who will find you a suitable chair for you and your enviroment. Having the Wheel chair service pescribe you a chair is proof of your need for one with people like dla. Ask to attend pain clinic who can send you on courses to help you manage your life and your pain within the confinds of your disability. Write a budget, plan for the future so instead of rushing round putting out financial fires you can see and plan for what is round the corner. Be positive and realise there is life with disability you just need to manage your life differently from before.

Hope things get better for you

nutty

[37yearoldoap in reply to welshnut]

Cheers for your insight fella your right it is all just a vicious circle stress causes me to have flair ups and its hard not to get stressed when everyone seems to kick you when you are down ie the government i got the wheelchair of a very kind neighbour of ours its brand new but without a car to put it in it is pretty bloody useless had another bad night last night finally fell asleep at 4.30 this morning after taking enough painkillers a Vallie's to knock out an elephant i just don't see the point of going to bed at all anymore because i know the moment i try to switch off the constant ache that's in my joints does not let me switch off and after a flare up, comes the constant cramp in my calf muscle's which is extremely painful when constant reminds me of my all night dancing days but without the socializing and fun lol

[johnsmith]

Hi

It sounds like that you are relatively new to this and so like all of us who have been though it want a cure from the NHS. Been there done it.

The next stage you look for anything that will help from where ever. Then you hit the depression when you realise there is no cure. This is bereavement of sorts. It will have to take its course.

The last stage is the acceptance. I don't know what stage you are at.

You can do two things with pain. Fight it or accept and observe it. Fighting it will make the pain worse. Observing it will enable you to handle it better. This is a matter of experimentation. Mindfulness and meditation are good techniques for doing this. These techniques are practised by various buddhist organisations. The Buddhist Sciciety

thebuddhistsociety.org/‎

should be able to put you in contact with a buddhist group in your local area if you want to explore the techniques further.