I am usually pretty upbeat. After both my bypass and amputation I could see improvement if not on a daily basis definitely as the weeks passed.
However 2021 has been much more of a struggle. In the background some will know I am having stump and housing issues. Since shortly after the amputation I have been having an ongoing problem with phantom pain. For some reason it seems to come on in the hour or two before I go to bed or as I am dropping off. This seems to have got worse as the background issues continue. I did find what I thought was an appropriate (phantom) pain management clinic but could not get on the course for what I felt was a form of discrimination!
I have two prolapsed discs and lower back pain has become more frequent. And to top it all off the ulnar nerve issue I had post bypass surgery has resurfaced.
Sorry for the rant but feeling so aggravated and despondent by it all!
Written by
MichaelJH
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Morning Michael. So sorry to hear of your on going problems. I have missed you on the BHF site, where you were always so helpful and knowledgeable. I cannot appreciate your particular medical problems, but understand only too well the frustration of not seeing any progress or improvement, whatever your condition is. I cannot offer any practical advice, but would recommend the "Explain Pain" book by Butler and Moseley which helped me with chronic lower back pain and if I remember correctly mentions phantom pain as well.
Always good to have a rant! Thinking of you Nettekin x
Oh Michael, so sorry about your pain. A friend had an amputation like yours and said it was painful. Back pain is also dreadful...can vouch for that myself. Why couldn't you get on the pain relief course?
Hi Michael. Rant accepted that is what we are here for, You are it seems going through quite a lot at present. Sorry i can't advise regarding your phantom pain, Hopefully you will be able to get on a pain management course very soon. I can fully sympathise with you regarding your back pain, i myself have had problems for some years. I do not know if it would help in your case but i have attended a chiropractic clinic for several years now and have benefited from that. Hoping all gets better for you. Best wishes.
That's perfectly alright MichaelJH. It's only human to become despondent and , as a result to need to vent about your plight, and if here isn't the place to do that (so long as it's within community rules), then I don't know where is! Venting when things go wrong is a part of positivity in the longer term as we can't feel better until we can let go of our negativity. I don't know of anything that brings us down quicker either, than physical and/or mental pain.I am so sorry that this is dragging on for you, and it does seem that it's all becoming long term.
I obviously have no idea why you've been refused help at a pain management clinic, and can't comment on that, but I'm sure it makes you feel angry and hopeless.
I don't know what to suggest, but it seems clear that more help is needed. Have you considered appealing the decision not to let you access this help? I hope you can find something or someone who can help you through this successfully, and as quickly as possible.
Hi Michael, I'm so very sorry to hear how awful things are for you. Your support, knowledge & jokes have been greatly missed on the forum. I'm so glad you turned to the forum for a healthy & hearty rant - I hope it made you feel a little better & it was definitely a positive step. I know nothing of phantom pain, thankfully probably few of us do, so can only offer a suggestion re my own pain relief for fibromyalgia & arthritis, have you considered Chinese medicine & acupuncture? It might be worth talking to someone to see if it might be an alternative source of support. I wish you well and so hope 2021 starts to improve very soon for you.
So sorry for your situation Michael.
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Surgery is a huge shock to the physical body and the communication between nerve endings and the brain to produce the pain and sensations you are experiencing is the body's way of communicating its not quite happy and needs your help.
I believe some surgeries impact on us mentally, physically and emotionally so its all these areas we need to pay attention to nurture, to heal and go easy on ourselves.
Its a pity you couldn't get on the course you tried to go for, I wonder if you approach the hospital again if they can put you forward for another pain management course specifically for helping with phantom pain.
I expect you have already been doing some research but in the case they may help at all I include some links below.;
It varies considerably. Sometimes the disc can be tender/painful to the touch, other times it presents as sciatica and others as lower back pain and muscle spasms.
Hi Michael, We all deserve a dammed good rant at times and you certainly deserve one. I know constant pain can drag you so low, and I can only offer soothing words and a virtual hug. Thinking of you, take care, and keep safe. Ruth
Hi Michael, thought I hadn’t seen you about lately, sending you a big hug.XI find if I get mad and fight back I feel a bit better. Just had 4 days in hospital, appalling treatment, could have died, just composing a forthright letter to PALS.
Don’t take no for answer, get on you pain course, make a fuss. Those who shout loudest get heard, it’s sad but it’s the way of the world.
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