Introducing Myself, Introducing My Pain

[MichaelJH]

Although I have been a member of HU for four years I have only just joined this forum. As background I am a lifelong Type I diabetic, suffer from PAD (Peripheral Arterial Disease) and had a quadruple bypass three years ago.

I have had quite a bit of pain over the past 15 years. First I started suffering bad lower back pain and sciatica. This was after along time diagnosed as two prolapsed discs (L4 and L5). Shortly after diagnosis I suffered a fractured femur. Added to this I have arthritis is various joints in my legs.

However, worse was to come. Last year I developed an infected toe that ulcerated and then became necrotic. The pain between the dead and live tissue came is spasms and was off the scale. Eventually infection set in and I had a BKA (below knee amputation).

Before the amputation I had never heard of "phantom limb pain". In the early days this was truly awful and I was on Oramorph, Tramadol and Gabapentin. These days I suffer it to some degree every day and some days it can be really dreadful stopping me getting to sleep or waking me in the early hours (a very lonely place). I take Gabapentin three times daily and the occasional Oxy-codone when it is really bad.

Anyone here suffer the same?

[Emma2017]

Wow Michael that is some awful situation you are in. I doubt wether you will find anyone on here suffering all those conditions. I truly feel for you. I personally can only relate to your prolapsed discs. I suffered a massive one causing CE. Had multiple operations and ended up with a fusion. I had an op higher up on the spine too. It’s been a long way coming back from all that but am improving. The pain, especially that horrible nerve pain is always there. I cannot speak for all your other issues. My father in law had a quadruple bypass many years ago. He managed quite well afterwards. Unfortunately he passed away some 10 years ago not related to his bypass. Cannot comment on all your other issues but hopefully someone else can.

[Moreorless]

Hello Michael

No, I don’t have your experience of pain but I do know someone who never stopped having ‘phantom limb’ experience in the morning and would often get out of bed and fall on his face because he had forgotten his limb had been amputated.

Have you looked into Flipping pain - a website with lots of practical and mental tips- no cure but just thinking differently about pain. I find it helps sometimes on some days.

[Von816]

Morning Michael, I take gabapentin and have sciatica and neuropathy after (???) I woke up 2 months later. I have found cbd to help so much better. I have gone from taking 400mg 3 xs a day to 100 2 xs a day of gabapentin. I also take LOTS of vitamins. B1, D, Magnesium, folic acid, multi, fish oil, probiotics. I have found they are less harsh on my kidneys which go bad after years of taking meds. I have a bad ticker. I hope you can find some relief. Meditation and peace is the only thing else I can suggest. I pray something helps for you.

[Sandy247]

Hello Michael, I too suffer from a lot of pain. I am in pain 24/7/365. Like you, I have had problems with L4 and L5. To begin with I was given painkillers, the strength of which was gradually increased. I was then given injections in my spine, between L4 and L5 and the pain disappeared. Unfortunately, this treatment was stopped as it was thought that the steroids in the solution that was injected into my spine, was relieving the pain and not the cushioning effect of the injection. I asked if anywhere in the UK had tried using the injection without the steroid in it so that their theory could be proved/disproved? Silence followed by "No". It would appear that the NHS was told to stop using this practice to reduce a person's pain because of the cost. I think it is available if you are willing to go private and pay. So, I am left in agonising pain if I twist my back or bend incorrectly.I also suffer from Peripheral Neuropathy and have been through the whole range of tablets from Gabapentin to now, Lamotragine. This is an anti-covulsant and has been quite effective for the last several years. Unfortunately , my pain has returned to the point where I sometimes cannot sleep as my feet feel as though they are on fire. My GP decided to try me on Gabapentin again however, my appetite increased and I can't remember if it was Gabapentin, Pregabalin or a.n.other med that affected my gut and destroyed the chemical that tells your brain that you are replete I put on 3.5 stone in a very short period of time. Because I also suffer from Fibromyalgia, CFS, Severe Sleep Aponea and a list of other chronic conditions, exercise was, and is, almost impossible. Because of the weight gain, and suspecting that my increase in appetite was brought on by returning to Gabapentin, I weaned myself off the drug and started trawling the Internet to see if there was a more natural way of treating PN as, like you, I am taking a lot of meds and I know these can't be good for my kidneys and liver. I discovered that experiments had been carried out using control groups to confirm whether the scientists theories were correct. They were! The "drug" they used was Vitamin B Complex. I am going to ask my GP if I can trial this for a month or two to see if it works for me. I hope it does as I much prefer taking natural remedies. I will report on HU the results. Why don't you try asking your GP if you too can try this. The worst that could happen is that it doesn't work.

I was told that opiods are no good for nerve pain, so you may have to take the same journey as me through all the possible "message blockers/anti-covulsants " or , with luck, Vitamin B Complex will work for you.

I am very surprised that you have been given Tramadol, Oxycodol and Oramorph as opiods reduce a person's life-span. A fact all GPS know.

Have you been referred to a NHS pain clinic? When I originally used one I had to physically attend a hospital however, I don't know if this is because of COVID-19 or cuts in the NHS, but now I have telephone appointments. The new approach is to bring alternative medicine to treat pain to the attention of the patient. These range from meditation, behavioural changes, acupuncture and change of diet. My therapist - the new approach to pain means that instead of only dealing with pain specialists, therapist are also used to help and explain the virtues of alternative ways to approach your pain. Returning to acupuncture, I found this totally amazing. My pain was taken away and for the first time in years I had no pain. The only problem is that not many NHS Trusts offer this service and it is

expensive, from about £50 a visit.

There is a Phantom Limb Syndrome Community, at www stuffthatworks. health/ that may be able to help you. I do hope so.

I think that there is a NHS booklet you can get for free explaing about phantom limb syndrome.

I am very sorry for the length of this reply but I wanted to let you know how certain meds prescribed for pain affected me and also sign-post you to alternative medicine and an online support organisation.

I hope this reply helps you.

Take care and stay safe

Michelle