catchthepigeon68

HI , I AM A BELOW KNEE AMPUTEE THAT HAS HAD STUMP PAIN AND PROBLEMS ON AND OFF SINCE AMPUTATION IN '99. I HAVE ALSO BEEN GETTING PAIN IN MY "GOO LEG" FOR ABOUT THE LAST 4 YEARS , RECENTLY , AFTER CT SCANS AND MRI SCANS I HAVE BEEN DIAGNOSED WITH SACRAL INSUFFICCIENCY FRACTURES , I WELCOME CHATS FROM ANYONE IN SIMILAR POSITION AS MYSELF . CLOSE BY "ISH" WOULD BE NICE AS I AM SOCIALLY ISOLATED . CAN I ALSO ADD TO THIS FOR ABOUT THE LAST 4 YEARS I AM HARDLY SLEEPING DUE TO A TRAUMATIC THING IN MY LIFE . I HAVE BEEN ON MORPHINE (MST , AND UNTIL RECENTLY SEVREDOL , WHEN I THOUGHT IT WOULD BE A GOOD IDEA TO TRY AND REDUCE AS I HAVE BEEN GETTING WORSENING ISSUES OF DEPENDENCY OVER THE LAST 18 MONTHS) I HAD HOPED MY SLEEP WOULD IMPROVE , BUT THINGS ARE WORSE THAN EVER , NOBODY KNOWS HOW CLOSE I AM TO TAKING AS MUCH AS I CAN .ALSO DUE TO THE SACRAL PROBLEM I AM GETTING BLADDER AND BOWEL PROBLEMS , TROUBLE PEEING AND I CAN'T EVEN PUT ABOUT THE BOWEL PROBLEMS IT IS STRESSING ME SO MUCH

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  • Hi I know how u feel I had my left arm amputated in 2011 and the pain is worse than ever and I'm waiting to see if they are going to amputate my right foot I'm hoping that they don't take the foot, so in some way I know how u feel

  • hi , what was the reason for your arm amputation ? my leg was from a bad motorbike crash in '86 , elected to have amputation in '99 so many operations never improved things. your foot , am guessing your diabetic ?

  • Hi I suffer with crps that's why they amputated and yes i am a diabetic but it's not why I may have my foot amputated I had a car accident in 2013 and now I got crps in my foot and also I have got to spend the rest of my life in a wheelchair and at times I have thought of taking my own life, because the pain is so bad all the time and most off my meds don't work waiting for pain specialist to change them.

  • Hi yogibe, I also suffer with CRPS and I know what your going through with the pain side of it, so sorry you had to loose your arm through it. I've never suffered pain like this in all my life I had a full knee replacement 2 years past in September everything went great and about 8 weeks after the op I woke up to the worst pain ever and couldn't bend or straighten my leg so I was back n fourth from the hospital and this went on for 2 years and my knee is still in the same position half bent I still can't straighten or bend it got to sleep with pillow in between my legs and when I'm sitting up one under my knee, so I went to see my consultant on the 8th Sep and he gave me the worse news ever I have CRPS so I don't get out much at all because of the pain only Goto doctors appointment and things like that even if I go out I then suffer for days. I've been at my doctor for about 3mths now the pain I'm getting up n dwn my arm some days I can't even touch it its that sore and even clenching my hand is so sore it's all on the same side so my doctor thinks it could be CRPS but can't say for sure I've got the pain clinic next month about my knee this will be my first app I had to wait 6mths on this it's not coming quick enough lol sorry for such a long txt take care Elaine 😀

  • Hi I'm 99% sure that what u said about the arm that it is crps yes I know how u feel about the pain most nights I'm crying like a baby most off my meds don't work waiting for pain specialist to change them, I have times though off taking my own life but I'm still here.

    I know it's hard to go anywhere because of the pain I think I spend more time at the hospital and gps I do have cares coming for a few hours a day to make my meals and other things. I hope ever thing go's well for u at the pain clinic next month sorry for replying so late I don't sleep much anymore I drink about half a bottle of liquid morphine it helps with the pain for about half hour but after that the pain seems to be worse than ever, sorry for going on.

    Take care best wishes Peter

  • Consider taking a good (safe) dose of vitamin D3 catchthepidgeon68.

    Vitamin D is often referred to as the 'sunshine' vitamin.

    85% of us here in Uk are either low or deficient in vitamin D and do not know it, especially if we rarely sit out to soak up the warm hot sun, (which we don't often get here in UK. )

    I was deficient and I did not know till a blood test, I never realized how powerful these little vitamins could be.

    My good safe dose of vitamin D3 (way higher than my Doctor prescribed me) cured my leg/sciatica pains, bum pain, hip pain, restless legs at night and cured my stiffness getting up out of chairs and bed. Also it cured my tailbone pain (i couldn't sit for long as my bum hurt,) My Doctor said I'd never cure my tailbone pain, I would just have to live with it. Yet taking a higher safe dose of D3 I noticed took all pains away including my painful tailbone pain, but if I forget to take my high (safe dose) of D3 all my aches and come back with a vengeance.

    Many say they have more aches and pains in the winter (not much sun around to soak up their vitamin D)

    check out this link for safe up to date doses of vitamin D

    www.vitamindcouncil

    D3 is known to help bowels, lungs, bones, aches, pains, prostate and other cancers away. So well worth checking out that website catchthepidgeon68.

    D3 is also anti- inflamatory.

  • Good luck with your scan CTP. Do take a look at the www.vitamindcouncil

  • what sort of morphine are you on ?tablets can lead to constipation reduction will affect sphincter muscles hence problems with Poo/wee.I have not got what you have but have pain issues fentanyl induced hyperalgesia joint and spinal conditions as well as neuropathic pathways generally breaking due to fentanyl.

    The fact that you have problems sleeping etc would suggest that opiates may not behaving in usual manner as I didn't sleep either ,thought I would flag this up there are blood tests that can be done to see if you are in withdrawal and wether cortisone is being released into system or not .

    Ask yourself what causes you pain and I mean all the things!

    Maybe a bupromorphine with a neuro blocker may work or do you feel that the morphine has helped at all ?

    I do know about social isolation and medical isolation withdrawal and neuropathic and mental breakdown ,mycondition is rare and suicidal ideation is not good especially when you keep it too yourself especially when you have reached saturation point .

    don't know if this will help .

    Ask yourself about what you feel is wrong it is your body and nobody knows it like u.you need to talk to a chemist about your Meds and a doctor who is prepared to listen .

  • for the last 6 months or so i am taking less morphine than i have been in the last 12 years , varying levels of dependency / pain control have seen it creep up at times to a now shocking 18 X 20mg Sevredol per day , and 6 X60mg MST (split into am /pm dose) , would you believe i have rarely suffered bowel probs even when things crept up to the highest doses ? . not sure if or how i can send a private message on here , so can't put the problem down xx

  • How do you feel about this ,the side effects are reality as we both know ,when I was coming off fentanyl I used piriton and naprosyn combo still use piriton for itch as it has never gone .pain consultants know very little about realities of addiction am also on quinine anti malerial now in last two weeks to help joints and very high vit c.

    Opiate based drugs can make you deficient in potassium as well .i got shakes vomitted and side effects of withdrawing from a class a as quickly as I did are the stuff of horror stories I am not over dramatising this so what ever you need to say I will probably know it it is a double edged sword because once the opioid receptors are activated you cannot ever go back ,my history was endometriosis and I was put on some form of opiate at 12 by my mum and then the medics just carried on have not had day without pain since 15 ,but it took fentanyl to break me worked etc many ops 27 in total am 48 now and retrospectively the pain consultant thinks that opiates always had this affect of multiplying pain so obviously I am wired differently and if you look at the contraindications on opiate based Meds some drug companies are more candid if you put together they say a lot without joining it together hyperalgesia is described without saying the name . If you need to talk about stuff it's fine this site knows what I have and I am not ashamed of what it has done anymore opiates are dangerous addictive and are not monitored sufficiently ;there is new legislation according to pain uk helpline advisor because there are probes she described it as a really hot potato at mo.

    So feel free to talk it may help!

  • Dear cp how are you its sat today ?

  • Hi Catchthepigeon,

    I am not an amputee but had a spontaneous sacral insufficiency fracture in Sept 2014. The subsequent tests showed that I have severe osteoporosis which is the reason why I fractured. The reasons for the osteoporosis have not been discovered, I was 47 so not age related, premenopausal so not due to usual bone thinning due to the menopause but was found to be very deficient in Vit D? I was given 3 months of high dosage Vit D then started on Alendronic Acid to try & rebuild bone. Unfortunately the fracture, whilst healed, has now left me with chronic post fracture pain and unable to walk without crutches due to the severe pain & use a wheelchair to get outside. I'm waiting for an appointment with the Pain Clinic but am currently on Cocodamol, Naproxen, Imeprazole and Butrans patches for the pain. I can sympathise with you, they are very painful fractures and slow to heal as you cannot keep your sacrum still or in a cast so the fracture is always moving, hence the pain! Sleep is very difficult, I was prescribed Amytryptaline for that but it makes me so drowsy the day after, I'm going to ask the gp for an alternative, maybe you could try something like this?

    Hoping you get some answers or some relief soon x

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