Getting really peed of with pain now.

[hatingmypain]

I don't know if anyone will read this, but I'm going to have this rant anyway!!

I started complaining of severe back pain when I was 14/15 years old, and have always been told it's growing pains and then it's all down to my weight,( being overweight all my life and then very obese for about 8 - 9 years.) and nobody at my gp would do anything until I was around 29 when my gp requested the first xray done which showed the bottom 5 discs were weraring out and a scoliosis ( fortunately only moderate) which cannot now be treated. I requested another x ray about 5 years later as the pain was worsening and the bottom disc has completely gone now. I'm now 40 and the pain goes from the base of my spine up past my ribs and sometimes upto the base of my skull. My gp has said she doesn't want me to have another xray due to the radiation exposure on the organs as they can't be protected and we both know it's only going to show more damage to the spine anyway. The pain is sometimes so bad I'll go to bed around 6pm with a couple of sleeping pills as I've had enough for one day. The anti depressants I've been taking don't seem to work - I feel very emotional lately, sad angry and very grumpy. I've been taking duloxotine for about 5 years for depression and they've been fine till recently. My employer was told by my gp ( who is pretty good) that my working conditiond had to be changed so he hasn't let me go to work in over 15 months, but won't make me redundant on medical grounds and I refuse to hand in my notice and leave for financial reasons. Like many others I've had to adapt life round my disability - I can't walk far, swimming is very painful, can't have a dog as if my pain is really really bad I wouldn't be able to walk it ( or bend down to clear up after it).

I have to take 4 oxycodone (up to 4 x 5mg) dihydrocodeine (8 x 35mg) and anti inflammatory pills ( 400 mg iboprufen x 8) which I'm not meant to have as I had a gastric bypass and they damage the pouch. ( was on naproxen 250mg 3 pd)

Everyday is getting more of a struggle to keep going mainly due to pain - on a scale of 1 - 10 everyday is around 5 1/2 from start to finish, with some days going to 10+ when someone has to help me get dressed, help me eat etc. and I had a letter from the dla stating I'm not disabled. I'd like to know what does mean disabled in their damned eyes then. Some days it just doesn't seem worth living as I know it won't get any better, the pain will get worse.

As I said, getting really p********* off with this pain. ( insert whichever word you like!)

[Hidden]

Hi, I too applied for DLA, also on Duloxetine, naproxen tried gabapentin, amitriptyline, codeine, cocodomol all to no avail

I cannot walk, each step is like walking on shards of glass which the pain then radiates through my entire body so I go into shock. When in shock I cannot pour a cup of tea, set the stove on fire, fatigue, depressed.

DLA advise regardless if I have my feet amputated - you can get artificial limbs so will be able to walk? I crawl - advised this is a way of mobility so mobile? The list goes on, even the GP said I cannot walk one step? Though they wrote back and said I can walk over 50metres? The Pain Clinic also stated unable to walk as severe to excruciating pain in both feet. The Rheumatologist stated that I have asked for my feet to be amputated or the nerves cut - either way the DLA say well that's your choice - you can use a wheelchair or crawl or actually use my feet?

I sympathise and totally know where you are coming from. I need help to get in and out of the bath/shower as I cannot use my feet and fallen so many times, have scar tissue upon the scar tissue on my knees and legs.

I do not go out as this brings on anxiety and a major attack if cold so again go into shock. Have meals delivered to me. My sister who is married flies over to help me every couple of months. I personally think they are just wanting us to keel over and bury us.

I've no quality of life, used to have a beautiful dog (boxer) that I would walk 2 hours a day and then a shorter walk early evening. He was found a new home.

So hugs to you "hatingmypain".

[joe69]

Hi, hatingmypain....

Keep fighting for the DLA. I did, it may took me nearly 3yrs. If you want something really bad then fight fight fight.

I found, that when I went to my welfare rights within the local council, they helped me the channels. Yes, as I said it wasn't easy, but what is. Keep fighting.

Please don't take this the wrong way. Back 3yr ago I was 21st, through many changes of meds, I lost the weight. Now, I wasn't on a diet, I like my grub, I just wasn't hungry at times, so changes where made. Am now at 16st, on which am still over weight. Do I feel better, then yes, nice to see the toes again, am I still in the same pain as I was at 21st, then YES. So, ye it annoys me when they say weight is the cause, I maybe is in some cases, but this is not always the case.

You take care, keep the chin up.

Joe

[gillimac]

So sorry to hear you are hoth in so much pain, I really feel gor you, keep on fighting for your dla, my niece had to have emergency back surgery three years ago, she is still fighting gor dla as they say she is not disabled.

Keep smiling, don't let the b..tar..ds get you down excuse the typing

[Boozybird]

Keep fighting for the DLA. This government has gone far too far! Easier said than done I know. When you're coping with pain and feeling low you just don't have the belly for a fight but take each day as it comes. My dad was 22 stone most of his life never had any pain until his hips went at 70! And then he went on a diet and lost half his body weight to have replacements done...

Hatingmypain - I am feeling you! Don't give up! Today is another day. I often need someone to talk me down (off the metaphorical ledge) when it's bad. Sadly fewer and fewer people in my life to do that these days but hopefully you have someone? X

[Hidden]

The weight thing is a myth. I was told to lose weight - was about 15 stone - am 5'11 tall on the days I can stand straight. Went down to 13 stone, pain was worse because I didn't have a thick layer of fat over my sacrum supporting it and holding it all together. Heavier people have stronger bones to support the weight. The only bad thing is the strain it puts on the heart and other organs. And when you lose weight your centre of balance changes, which can cause pain while your body is re-adjusting to it.

Hatingmypain, maybe its time to try a bit of meditation or mindfulness to clear the brain of negative thoughts. Sometimes a break from thinking about everything is good. Once you have learned how to do it, you can do it any time you like.

I thought employers were bound to adapting work places to suit employee needs. I left my work because it would have cost them £2000 to change things. I wasn't convinced I liked the job enough to justify them spending so much. I run my own business now. Loving the freedom to work when the body allows. Loads of time to spend doing my alternative routines too.

I haven't attempted getting dla, although I am physically disabled as recognised by the WHO definition, I am too active for our govt.

[mr-flibble]

Yeah agree keep fighting they want you to just go away, also don't quite work, again they want you to go so don't play into their hands, if your not in a union join one if you possibley can although I'm not sure they will be able to give you full work cover due to you already having the issue but if it did get silly and you wanted to go to an employment tribunal they would stump up for a legal team.

I also understand exactly how you feel generally, I have OA in my neck and severe OA in both Patella, I also suffer from chronic neuropathic pain syndrome which is worse than the other two put together, it also doesn't respond to any normal analgesia, it was cause by not having my neck pain treated for over twenty years, the knee OP in 2008 finished the job off as my brain pain receptors had become hypersensitive due to this fact, for me normal pain is quantifiable and treatable but neuropathic pain is a seriously nasty beast and you can't control it with any normal opiates, for me it has a distinct M O and it creeps in so isn't in your face but a slow tsunami of debilitation that slowly drowns you, I wonder if you've been in serious pain for so long you have this as well as normal main nerve pain?.

Anyway sorry to ramble on I just don't want anyone going through what I have, the medical system here is OK so long as your not in long term pain, when it comes to analgesia and more importantly treating pain especially neuropathic pain were way behind many other countries.

[missrat]

Are you under a specific pain clinic? If not, do ask your GP to refer you, as they have a much wider knowledge of medication and procedures to relieve pain.

I'm sorry you are going through this with DLA and hope it can be resolved. Many appeals are successful.

Ann

[johnsmith]

It is time to look at complementary medicine. Unfortunately it costs.

I use Alexander Technique, Chiropractic and Mindfulness. All these theripies require that you observe yourself.

I get chiropractic on the NHS. I was speaking to a member of my local CCG board and she said that they had contracts with local chiropractors. This suggests that you may have possibilities of getting chiropractor help on the NHS in your area once you have done the initial research.

I have been doing Alexander Technique for 35 years and if it helps in my pain control very effectively.

There has been a lot of research showing the effect of MIndfulness in pain control. Kingston pain clinic has an Alexander Teacher. A number of pain clinics are looking at Mindfulness. Mindfulness is a Buddhist Technique with 2500 years of history behind it.

The thebuddhistsociety.org/ can put you in touch with a Buddhist group practising Mindfulness in your local area.

[hatingmypain]

Thanks so much all of you for your replies, it does mean a lot. I was having an exceptionally bad depression day yesterday and having the rant did help ( as I said I didn't know if anyone would read it and it helps to know you have all taken the time to read and give me some great advice). I have gone to a pain clinic who weren't all that good - they did give me advice on adapting different things to suit my ability on a day to day basis but not much else. I'll be going back to my gp next week to ask for another referral and to ask about any chiropractic treatment that may be available too. With the weight issue - I have had a gastric bypass and lost around 10 stone so far - some to go but it'll come off slowly but surely.

Thanks so much again, it does help to know I'm not alone in this, although I wouldn't wish any sort of pain to anyone else!

[gullwing]

Hi, hope you wont mind reading my comments, I certainly cant measure your pain but I do pick up that you express a dissatisfaction, an underlying dissatisfaction at that. . . . I strongly suspect that the additional self prescribed medication that you choose to take over and above the meds that you are expecting the GP to understand that you ahear to as she treats or masks your symptoms............... Analgesic drug combinations are complex and you will need to communicate your condition to your GP, particularly as you state that you have a good relationship with her........ would your GP be able to state that she also has a good relationship with you if you are "cheating on her"............... The facts of the matter must be reported to your GP. ......If your meds are not helping you manage the symptoms then your GP will be able to alter the meds to a level that offers you a degree of relief.............If after the trial period you cannot report a better lifestyle then your GP will work at other drug combinations to increase the response through the gate of your spine to the brain.....this is a trial and report back system where you are the guinea pig, but you must not cheat..... Follow the protocol and the GP will take care of you, ................at the point that she exhausts her resources you will more than likely be refered to a numbber of different consultants in any number of departments eg nerve conduction studies, reflexology, hypnotherapy, aquatherapy, electroacupuncture, pain management.........and so on......You would benefit from putting in some time to take responsibility for body, youve only got one and by the description of your prognosis you have this to live with for the foreseeable future............. No intention to offend but I cant understand what leverage you expect to gain by admitting that yoiu dont feel that you have the capacity to look after a dog ???? Really this is such a backwards path to mind body and soul........... If you were a parent that develops a disease during your childs infant years would you not adapt your capacity to maintain a required level of responsibility as a parent??? Informing anyone within the medical profession that you wouldnt manage a dog or even manage to clean up after a dog says more about your mental health than your physical pain..........Having a dog is not and never was a prerequisit of your existance.........TRY to confess your additional meds to your GP and set up an honest working relationship with her...... I dont understand what you have interpreted as dangerous over the xray issues.... You can sustain a large number of xray and if not then you should opt for CT ultrasound imaging and MRI scan.... You might take a look at spinal chord stimulater as an option.........but I can say with absolute certainty that you will definately have a better quality of life if you can be honest with yourself and your GP , your oxycodone is only a small dose so there may be room there to increase the dose after your GP has weaned you off those unauthorised meds, and you might check to make sure you are taking the quick release capsuals...........Try and find a companion that will guide you through the daily torture of pain verses disability then find a pace that you can manage without yo-yo-ing your efforts...It has been said that if one knew that ones ability to walk was to be taken away then we would value what we have and make certain that we cherish it ............Please ask your GP for help, they can only help us if we can say to them the symptoms that we face.............. You are young enough to increease the quality of your life..............Please Please Please hang onto the fact that there is a line of poeplle over a mile long that would gladly swap places with you................... keep intouch let us know how you get on......