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[Angelfish285]

Hi I am new to this forum I have two neuro conditions which have made me disabled. I have been told I have a complex condition, usually said by a consultant which follows by them discharging me. My days are dealing with pain and discomfort and always involves lots of tablets. Even with all that to deal with I still try to do things and not let my condition get me down. I guess I'm stubborn I try to do things and ignore my pain till I've finished. Sometimes I wake up and I can't move my legs have locked or the base of my back is crippling me. I had a lot of botched lumbar punctures which had been weakened by having had a slip disc. When I wake up and I feel the pain or discomfort I wish that I had a day where I did feel anything and I suppose that I felt normal.

[Bananas5]

Hello Angelfish285 and welcome on board.

We try to help members with our own experiences. You can ask a question, we can't give a diagnosis, rant if you want or just post something you have done.

You don't say what your conditions are but that's fine. However one big thing you have to learn is...how to pace yourself.

Doing lots because you are stubborn won't help you manage your pain.

Have you been to a pain clinic or done the pain management course?

x

[Angelfish285 in reply to Bananas5]

Hi Paton thank you for your welcome. I don't mind saying what my conditions are I have Guillain barre syndrome and a function disorder both of which fight each other. The Guillain barre lays dormant and then if I get any kind of virus it flares up. I know what you are saying about pacing myself and I do try its difficult because I have a partner with a brain injury and I basically have to be everything and make sure everything keeps running.

I have been to pain clinics, physio, ot, tried alternative therapies you name it I've tried it.

[lowlife]

Hello angelfish, being in pain 24/7 Is hard but even harder when you have to look after someone else when really it'd you that needs the help. As for being stubborn I am the same but it's not till I've over done it that I wish i hadn't. Pacing Will leave you able to do more in the long run and if the washing or ironing doesn't get done that day then do it the next day as it's not the end of the world. When I went to pain management years ago one of the ladies there was so upset that she can't keep her house beautiful like she used to. I asked her if she lived on her own and she said yes but has always been house proud and that if it's not done she feels guilty seeing as she doesn't work anymore. I reminded her that she can't work due to I'll health so no one would expect her to be able to carry on as before. She excepted my answer and no longer beat herself up about it. As humans we are far too hard on our selves so just do what you can when needed and ask for help now and then. X

[Angelfish285]

Hi lowlife you are right I am learning to pace myself. I think for me I'm housebound and seeing things in a mess doesn't help me relax. When things are tidy I feel relaxed and happy but I'm learning to do it within pockets of energy, which has become less these days. I have to not only deal with my legs not working without help, but seizures, severe muscle spasms which can affect my breathing loss of speech, severe back pains and head pains (I hate listing everything because it feels like I am moaning and I'm not a moaning person).

Our brains can be cruel, part of my brain says you use to do this so get on with it and the other side and my body say hell no you can't do this (I sound nuts lol).

I always try when I can to laugh it off and never complain. For me if I thought of too many of the negatives it would get me down. Seeing a trauma therapist has helped me a lot. When you become chronically ill or disabled and your life changes overnight no one ever realises that you grieve for everything you lose. In one day I lost my independence, social life, my career and much more. I have really got to start again and create a totally different life

[1proudmom22 in reply to Angelfish285]

Hi Angelfish, when did you first notice not feeling yourself and not feeling well? I am in the same boat. I have a lot of daily pain in my shoulders and back. I’ve recently been having chest pain and weakness in my legs. My symptoms first started a year ago with muscle aches, weakness in my legs and a severe headache that brought me to the emergency room. Since I have hand tingling in my extremities but mostly in my feet that has subsided. Pain in my thighs. I have random muscles twitches also now for quite some time and a couple times a pinching sensation in my right biceps.

[Freemans]

Sorry to hear, I am also new on here and have asked a question on dealing with pain. My pain is pretty severe with limited mobility. I'm going through the physio route but need advice how to maintain positivity and keep myself busy/focused (I'm currently signed off work). I have three kids and am no use at home so feeling pretty useless! I have the similar day dream of waking up and being back to my old self again. Good luck

[Matrix in reply to Freemans]

Hi I think my hobby has saved my life and I'm not saying this lightly because I wanted to die , the pain was so bad ( still is) I had three children and I was no use to anyone or so I felt , I say to my hub I'm not much of a house wife and we laugh about it now . So get yourself a hobby if you can afford it . I'm a paper crafter and just venturing into mixed media . Xx😇

[Angelfish285 in reply to Matrix]

Hi I'm glad your hobby has helped you, it is awful when your in so much pain. I think people unless they've felt that themselves are clueless. The times I've had people say on the rare occasions I go out that I look well makes me laugh. I want to say actually if I was really bad I wouldn't be out, and while I'm talking to you I feel sick with pain, but I don't.

I have tried several crafts I've just got to find something I can cope with, but I'll get there.

I'm glad yours has given you some purpose and something to focus on x

[Matrix in reply to Angelfish285]

Well it has and I'm able to gift people some home decor, mind you I have spent thousands , it's good because I can sit and do it . I love up cycling too and have a collection of stuff for when I'm able .

I know it can get annoying but why waste time on people saying that , they don't mean harm they just can't understand and if we are honest would we if we didn't suffer long term pain . I wouldn't mind so much if I had just one pain condition but I have lots of different ones. It's so hot here all I'm doing is sitting in front of a fan and my lower back and bottom are not liking it. Go on Pinterest and you will find loads of hobbies, one I tried recently is decoupage on wine bottles it's lovely really yes really enjoyed it . Xx😇

[Angelfish285]

Hi from one newbie to another, the best thing I can say is that just see anything you can do even if its get yourself out of bed its a bonus. I set myself a task and just focus on it, trouble is sometimes it can be bitter sweet in that I feel pain when I've done it but then I think the pain was worth it because I'm doing something. Don't get me wrong I have really had to learn the hard way. I've either had to push myself and made myself really ill or got so annoyed and frustrated because I have to rely on someone else. There is no easy fix, and I think I seemed to be the only one who came to terms with that I'm never going to be back to normal and do what I use to. But I refuse to have anyone feel sorry for me. I have had seven years of constantly thrown into no mans land because my condition didn't fit in a neat box. But what that taught me was to fight and look out for myself. Sorry end of war and peace about me lol.

If your in pain or struggling and not getting help you've got to be determined to get some help. If you don't mind me asking what is your condition?

Take care hun

Angie xx

[lou59]

so sorry to hear. I also have had increased pain after pain lumber nerve cortorisation.

why do we have to battle so.

please be gentle to yourself. if others could only know the pain and frustration of daily life the ups and downs. xx

[Angelfish285]

Hi thanks for your lovely message. Lumbar punctures are awful but when you get an idiot that obviously doesn't know what he's doing its ten times worse. My first lumbar puncture it took the idiot 6 goes to get fluid out of my back. For weeks after my back was black I couldn't sit up without being sick. My last one took them 3 goes, I wiah these idiots would do there jobs properly. Your so right about battling doctors seem to be very quick to get rid of people and leave them to cope on their own.

I have been my own worst enemy and pushed myself too much at times. It doesn't help that I have a partner with a brain injury, which leaves me with a lot on my shoulders. But I am learning, I'm starting to try meditation to see if that helps keep some control of my muscles.

Anyway enough about me, if you don't mind telling me about what you have to cope with I'd like to hear.

Angie x

[Looper50]

Your very positive. How do you do that when your in so much pain. I have become a whiner. But I'm not diagnosed yet had MRI Sunday. Doctor thinks it's herniated disc. I have had this for two or three months. Had x-rays,blood work,and ultrasound. Nobody has helped me but last doctor. Extreme pain in leg and can't hardly stand or walk. Everything I do dishes,brush teeth ext.

[Angelfish285]

Hi I guess ive tried to think that way, its not easy. I remember badly breaking my arm (which resulted in an op and a plate put in it) when they were messing around with arm I thought I can either cry my eyes out and feel worse for it, or laugh it off and distract myself, which is what I did. Its not easy now when there's pain or discomfort 24/7. My condition throws seizures, severe muscle spasms, severe head and back pains, paralysis in parts of my face and legs and numerous other things. Because of all that doctors can't wait to get me out the room, and that hit me hard. But that now has made me hardened and I look after myself.

I hope you get a diagnosis, if they don't give you one, don't give in. I'm afraid chronic pain sufferer's have to dig their heels in or they'll get dismissed. What kind of meds have they got you on, and have you tried a tens machine?

Please let me know how you get on, and if you want to chat you know where I am x