Feeling fed up

[Angecreed]

Hi all. Have been to pain clinic today different one from last time and because I've already been to one they won't see me again (45min drive to be told that) they then asked about exercise and did I learn any techniques at the last one. Admittedly I haven't done them for a long time but this is because I am in absolute agony even after doing just a few and I explained all this. So I've now got to go back and learn the exercises again. I know them but I can't do them I explained they cause severe pain to be told well that's what I'd expect, not excruciating pain but pain non the less. Don't get me wrong I understand the whole no pain no gain because I used to train 25hrs a week 5hrs a day Monday to Friday weekends off so I'm no stranger to excercise. But when the simplest of things pull your back out it's so damned frustrating. I don't know how much longer I can carry on with this. My life isn't my own I used to be so active I used to go hiking go the gym everything and was a size 6/8 I'm now this useless thing that can't even walk to the kitchen without pain and a size 14. I'm on 60mgs mst 100mg amitriptalin and oramorph as and when needed. I've had pregabalin and gabapentin and reacted to both. At a loss now because I just don't think they "get it". I want a life I want to do things and I do try but at what cost.

[sammy2016]

Hello, I read your note with interest because I think I have written somethng quite similar. Excruciating pain and loss of willpower to move. Well, if you read through the side effects of Pregabalin you will see that one of the side effects is "pain' . Unbelievable but it is so. I slowly weaned myself off with the help of the GP. I felt sick, I was in pain but after some 8 weeks I am off Pregabalin. I am still on Fentanyl but I will start using the Alexander Technique to help with pain.t I tried excercing the legs and against all belief it helps me. Since I have started it - and I do it in the middle of the night, because I can't sleep for pain - I cope a little better. Please do try it. Don't give up. The side effects of all the med you are taking are so bad that you will damage yourself. I am determined to get rid off somehow to become myself again. I do understand your frustration twith people who say "do exercise' but strangely there is some truth in it. Let me know once you have tried if after a while you see at least some improvement.

[chairbasedIns1]

Most swimming pools have sessions for Disabled and it looks as though you may have to 'swallow' your pride and accept you are in that category.Perhaps you are too hard on yourself. Chairbased Exercise is also a good start and many soon progress to standing up or have mixed abilities. Tai Chi Gigong is also good but not the more hectic types Exercise about 10 mins a time, even a slow walk once or twice a day is a start. Do a bit and rest a bit. Might be worth getting a Physio assessment, first. It is often possible to self refer these days. I dont know where you live but if you put in your Council name , then Exercise it should bring up what is available. Little and often and getting the balance right will give you a life, but not perhaps the one you had before. Keep positive and Good Luck.

[1goldie]

Aw I am so sorry to hear your frustration, justified I know. I am afraid pain clinics can only really advise exercise. I too have got no comfort from my visit. A few things I would like to tell you might be of interest. Only YOU can decide how little exercise you can bear without causing your poor body further distress. However slight or whatever muscles you can use, flex them, especially the core as it supports spine. If you can read Margaret Hills and Dr John McDougall books. Theory being foods can add to uric acid buildup causing pain. A lot of real testimonials advocating all medication cause further problems on top of original illness. For over a year I have watched my food value intake and will only resort to paracetamol for a flare up. I have been unable to move any limb, joints and in excruciating hell for maybe 2 days (not often) and then I am normal again. I have been on crutches with severe back damage twice in my life, and now can play table tennis on a good day!! Please research info on net, be your own doctor, try to minimise med. and even to wiggle a toe or fingers for a couple of minutes will send the idea of exercise up to the brain!! YOU can beat this, gently and in your own time, discipline in your own knowledge of gym work, and try to let go of the frustration of an overcrowded system that can't possibly deal with all of us 😏

[johnsmith]

You do not say what the exercises are. Some exercises are designed to stretch over contracted muscle. Stretching over contracted muscle in order to get the muscle stretched out can be a painful process. I lnow this because I broke my wrist a few years ago and had to spend months to get my muscles working as they should.

See a sports therapist preferably one used by the local football team. They may be able to check that you understand the exercises that you need to do and that you are doing them in the right way. Then see an Alexander Teacher to learn about muscle and posture input on pain and discomfort.

The human body is a complex organism with a wide variety of feedbacks. Google "muscle trains" and see what this says. Google: "tensegrity model of the human body". This may give some better insight on how to reduce pain and discomfort.

Hope this helps.

[Angecreed]

Thanks everyone. I have had a quick look at the Alexandra technique on the internet so will start trying to get my head round that. I struggle with my own health but I also get angry at myself because I have a15 year old who has osteogenesis imperfecta (brittle bones) and she puts me to shame. I have to do a lot for her so I'm not inactive. A lot of why I feel the way I do is through sheer frustration and I know that. Frustration because I can't do the things I used to for her and frustration at my inabilities. Going to go see my GP today hopefully if I can get an appointment x thankyou everyone x X

[Titanaboa in reply to Angecreed]

Hello Angecreed

Think I've been living under a rock! How did I miss this post?!

It's saddening that you feel like this.I've heard such mixed reviews on pain clinics and not to be negative but the majority haven't been positive.

So am I correct that they basically were glorified physios when they helped you?

Are you managing your pain and did you get anywhere with gp?

Your life before pain sounds like mine I was into military fitness and trained like the devil himself was after me ! Then all of a sudden kablamo....nothing could be done without pain and I'm pig sick of resting. I too have gained weight and while it's not the end of the world it does make you feel down because you worked hard for your Fitness. So I completely get it.

We have Alot in common thee and me I am a carer too to two gentlemen one with epilepsy and one with mental health challenges. Both can't work and live with me and turned from friends to family. And I am finding myself struggling more and more with the daily tasks of looking after people.

Hard to do and get your head around but would it be an option for outside help to give you a hand ? Any charities or government care to tap into?

Your daughter sounds like an amazing young woman and shee's clearly took after your strength! I'm sure you're a proud mum.

Definitely post on here and let us talk to you.

Please don't let these frustrating feelings blind you from all you're doing for your daughter. You're carrying on through what many couldn't dream of and setting her an example of a lifetime. You're strong and you are coping with so much!. Life has changed for the both of us. I personally found more peace when I let my pain live next to me rather than fight it and accept that I'm just not who I used to be. But I understand that's not for everyone.

Keep me posted and pm me if you'd like to talk

Ann-Marie x