Hi: hi, i have just been looking at different... - Pain Concern

Pain Concern

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katelee profile image
10 Replies

hi, i have just been looking at different chronic pain treatments and i came across this site. i have had chronic pain in my chest (and back) for over 15 years. I am prescribed fentanyl patches (75mg) and oxycodone to help manage the pain (and to reduce the many pointless visits to hospital when the pain is unbelievable). i have always felt like i am fighting the medical profession except for my excellent gp who is not a chronic pain specialist. I have just had to deal with moving from dla to pip and of course my money has been reduced even though i my pain has done anything but!!! I am not having a good day as i feel like i am fighting the world and being judged at the same time. There are supposedly all these different treatments that are used all the time but i am unable to access them through my pain team (i have had more that one). i think its the general frustration that is so hard to manage on top of the pain itself.

I hope you are all having a better day than me.

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katelee profile image
katelee
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Poppy_Ann profile image
Poppy_Ann

Hi KateLee,

Like you I suffer chronic pain mine is my back, neck,,hips,knees feet, shoulders you know how it is mine started after an accident I was involved in in the army where I was crushed and my back was broke in three places but that was back in 1976 at the time it was just my back that was a problem but as the years have passed the pain has increased now I can hardly walk i get around 2 to 3 days a month that I am able to get out and do a little shopping as long as I can park next to the store door but as bad as it is there are people that are worse than me at least I am alive i had friends who did not manage to leave the army who died.

Re the DLA/PIP benefit racket the government has it is a joke the main reason they brought in PIP was to kick of as many people who were on DLA as they could, with me when I had to apply for PIP it took close to two years to get it one of the jokes they tried was to do the interview with me but put nonsense down as my answers when the reply came it said there was nothing wrong with me that was bad enough to give me enough points to qualify when I read the full reply all of the answers to the questions were nothing like I had answered I called them stating that the report was nothing like I had stated and I wanted to appeal and added that I had a recording on my cctv system and if they wanted I was happy to send a copy (the guy who did the interview hardly looked at me he was looking at his laptop all the time) they offered to do a new interview so I agreed and on the second interview I was put on mobility at the higher rate and care at the standard rate but what the payment arrived they did not back date it to when I first applied but to when I asked for a appeal so they saved close to 2 years payments.

what ever you do do not give up keep telling them you want to take the claim further and remember make sure you send copy's of any evidence you have I sent in my who life's worth of medical history along with a list of my prescriptions plus a copy of my pain diary which I had for the last two years the prescription list and pain record were the main things that helped you can get you medical notes from your doctor if you just get the items that are on computer it costs £20 when you ask for the copy make sure you state you want the prescription list included as they don't do it as standard and if you ask later you have to pay again I got a full list and it cost £70 but it was worth it as I used it towards my army pension, PIP and ESA claims.

good luck in finding something that works for you

Regards Poppy Ann

katelee profile image
katelee in reply to Poppy_Ann

luckily i have an excellent and supportive GP so she has already printed off stuff for me. It's hard when it feels like they are playing a game with my life! I was only given it for 4 years, less than my original DLA one and i have never had a prognosis that includes getting well.

wow that sounds like a lot of pain you have to live with and for a long time. Hopefully they will come up with something that will help us all. The best thing i tried was a therapy called EMDR and i have an osteopath i just wish i could access this stuff through the NHS.

look after yourself

xx

Hermes123 profile image
Hermes123 in reply to Poppy_Ann

hi Poppy_Ann Loved your reply to katelee, I can empathise with both of you, but my problems go back to 1969. when the fist man landed on the moon, operation where a thing of fantasy! I spent three months lying on a board down stairs with a serious trapped sciatic nerve down left leg. This came from the base of my spine, I had a 13. year wait before a risky operation was available. I believe all my problems stem from this period. Like you I was ex-army very fit two and a half years active service, a long distant road cyclist : long distant cross country runner : boxer : weight lifter : so on and so fourth, this is where I get very annoyed with people telling me about exercise or this technique or the other, over that many years I tried more things than most people have had hot breakfast. Also gathered lots and lots of information from health professionals, yet still being treated like a first timer, I have a wonderful G.P. he knows my back and all other joint failings, when I go to see him is a time of great pain, we look at one another as if to say we are wasting each others time as we have run out of options, most of the past operations I have had, lead to partial success or in more pain than I had in the first place. All leads to my total exhaustion. I have provided myself with a number of self equipment and rubs that go beyond the off the shelf pain relief treatments that do nothing for me. My best friend over many years is a medical type infrared heater, without that I don't think i would of coped. Poppy as an ex service women you will know about the Forces covenant a promise that all serving and veterans alike would receive priority treatment, not worth the paper its written on, as to qualify one has to serve a minimum of eight years, on a resent high level pain management course, afterwards the physiotherapist ask me if I was suffering from PTSD. As she had notice I was jumpy, I said I been like that since I came out of the army. That is as far as it went. Hermes123.

katelee profile image
katelee in reply to Hermes123

Wow, thats a long time to have pain for.

its outrageous that after serving for the armed forces you are both left high and dry. If you suspect you may have PTSD then looking into EMDR may be worth your while as its predominantly used for trauma.

i was 21 when my pain started, it seemed like it came from nowhere. But like both of you i was very active and did a lot of sport. I hate the fact that i seemed to be viewed as weak, lazy, malingering etc when i am anything but.

take care

Hermes123 profile image
Hermes123 in reply to katelee

Hi katelee, we are what we were? now we are left with what with what others think we are, but wouldn't we love to go back physically to what we once were, it is that which has given us the strength to cope. it is so nice to find like minded people.

best wishes.

katelee profile image
katelee in reply to Hermes123

geez that brought a tear to my eye!!

thank you x

Hermes123 profile image
Hermes123 in reply to katelee

Katelee, Don't worry about what others think, Ignore them and they will go away. concentrate on your own well being, you have to stay strong and look after yourself. you know you can do it! no i did not say it was going to be easy, but that is life all over. Hermes123.

Poppy_Ann profile image
Poppy_Ann

Hi Herms123,

I served 12 years and would have gone on to do the full 22 but due to being medically down graded I would not have gone passed sergeant and as pay is directly linked to promotion I asked to be discharged the doctor at the time told me there are no jobs out there you will be better staying in and accept staying as sergeant until you finish at your 22 years so you get a full pension I said I doubt I will not find a job where I can earn as much as I do in the army and being out there will not be any blocks on my promotion so he agreed to discharge me I came out and started work whilst I was still on leave and never had any problem getting work in the end I was self employed earning over £35000 plus expenses I had more work than I could do I use to restrict myself down to 40 hours a week (on the books) also I use to charge £0.60 per mile on top of my hourly rate and use to average over 50000 per year, I still get offers of work even now but I cannot be bothered plus if I did any it would put me on my back for a few weeks even just a trip to my local supermarket when I can park next to the door takes me a few days to get over it.

a few years ago the local hospital offered to operate but warned me that for every disk they fuse there is a 10% chance or paralysing me and as I have 3 disks broken they would have to fuse 5 in total which to me meant there was a 50/50 chance I would not walk again and at the time walking was not to bad so I said I would give it a miss and wait until I could no longer walk then the odds were of 50/50 of fixing me at least to be able to walk I know it is the same numbers but the second one sounds better to me.

Regards Poppy Ann

katelee profile image
katelee in reply to Poppy_Ann

i just wanted to let you know i listened to what you said and i am going follow through and do a mandatory reconsideration. You were right, I was just having a bad day and a weak moment!

thanks x

Hermes123 profile image
Hermes123

Hi Poppy Ann, your ex-forces shines through, grit and determination there is know getting away from the fact it set's one up to face challenges one might not have done, I had a very tough job when I came out of the forces, started of in the aircraft industry learning a lot of the skills of a detail sheet metal worker, when I finished my time I had my first job in the sub contract industry, not long I was a works foreman, not long after that I was chasing the jobs learning all new skills techniques and methods, this set me up for jobs that took a lot of energy I thrived on this, carrying a lot of pain it got me though, only when I stopped the pain got, by that time I was to tired my brain shut down and I just fell to sleep. that is how I coped with work, So I applied the same method in retirement, I cannot do the physical so I try to load my brain to keep it occupied so i am thinking over my pain.

All the very best. Hermes123.

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