help with pain relief

[sharonb45]

Hi,I am new to this and even tho i have been like i am now for six years iv tried to deal with things myself and with my families help.I went to work just over 6 years ago and after then iv never been the same since!!! i started with burning pain and pain in my back,leg and bum and after a few days in hospital they did an mri sacn and found i had the biggest prolapsed disc they had ever seen the did an op and were pulling lumps of disc out of my back!!! i thought that i would get better but 2 more ops later and a spinal fusion i have now finished up not been able to walk and do things i used to be able to do.it has taken a long time to come to terms with what is wrong with me as it was such a shock and iv since been told that if id have had the fusion op in the first place i would have bee 80% better than i am now.people see me and say i look well,i wish they could see how much pain i am in 24/7 and how its affected my bowls and bladder!!! im now on 200mg fentynel patches as well as other things and that is what is causing my problems,im trying to reduce them but when they do im in pain and when they try to add in another pain medication it gives me such bad side effects cos im on such high patches.im sorry for the spelling its not my strong point and i would be grateful for any advice and help,iv been to pain councellors ect but they dont seem to help.many thanks everyone.x

[Hidden]

Hi Sharonbag, yes pain is such a hidden disability, behind closed doors we can cry and let go, but in public - we put up a veneer of 'all's fine' etc. I too have tried so many pain killers from the GP and Pain Clinic, none to date have actually helped. So sorry to hear of the pain you are in.

[sharonb45 in reply to Hidden]

thanks for the reply,its hard trying to tell people how you feel if you havent been there yourself,i no the people on here have herd it all befor but it is so hard to make people understand,even family members look at you daft when you try to explain to them.x

[Hidden in reply to sharonb45]

That's the thing, hidden. If you had an arm in plaster - sympathy or understanding immediately. Hidden though - it's your word. My mother is going through intense "hidden" pain so understands. The rest of the family yes sympathise but really have no idea. When other members of the family leave the house, I practically break down because while they are there, I'm somehow holding everything together.

[sharonb45 in reply to Hidden]

I feel for her,its awful cos when i first started i was only 37 and had young kids,my hubby now works 2 jobs to keep us going,it makes me so sad to see my family falling apart,i then get so frustrated and take it out on them.i dont have freinds to talk to and when there not here i feel very lonely.x

[Boozybird]

Hi sharonbag, I really feel for you. I was 37 when my back 'went'. I couldn't hold or play with my three year old and I know the desperation that comes with the situation...I think the main thing is to keep the thoughts and feelings together. Not easy at all! Some people on here recommend mindfulness and other sorts of meditative training and there is no doubt this must be useful in the long run. It's so disappointing to find friends and family staring blankly at you in pain when they could help so much with fighting on your behalf for better treatment or just being there when you're feeling low. It doesn't seem much does it! It's very scary and lonely being in pain all the time and I think those close to us almost become desensitised. I know I really need people around but ATM I can't cope with how useless they all are to have around...' Oh, is your back still bad' - mother of mercy!! Give me strength ! Give you strength! I try to take one day and one problem at a time. If I think about them all together then I'm overwhelmed and feel out of control. If I'm having a bad day I try to see that and focus on that. I can't change it or fight it so try and accept today has been bad. No shame in giving in for a day. Keep exploring avenues for treatment. Don't give up. You are still you, woman, wife, mother. Hugs to you.

[superannie]

Welcome to this site, so sorry to hear your problems, hope things get better for you in the future. I can relate to what you are saying. No one can understand what you are going through and constantly trying to keep the pain under control while putting on a cheerful front, is very exhausting. I have started to take each day as it comes, not to dwell on the past and not allow depression to creep in and make me concerned for the future. You are only human. Can you not take up a hobby of some kind? Distracting yourself with some activity that you are capable of doing with your condition, I wish you well Ann

[Hidden]

Hi sharonbag, I too have disc problems and sacrum damage. I manage with all sorts of alternative therapies and have made up a programme of activities that get me through the day. I tried each one for a while, took the bits that helped and moved onto the next one.

I posted a video of a very inspiring young man onto my fb page studiostitches - hndmade accessories for you and your home (can't copy and past the link on my tablet) . Absolutely wonderful. Please all have a look.

I've had my pain for 11 years and my girls were only 6 & 8 when I was really bad. They have grown up into very caring and insightful people. They realise there are hidden agendas when people suddenly snap, or become uncommunicative. They know when to help me and not, and its a natural process with no fuss.

I do remind my extended family because there has been so much illfeeling resulting from their thoughtlessness. On one occasion they booked seats up in the gods at an ancient theatre. Not only did I have a very uncomfortable journey up the stairs, the seats were so tiny I had to sit side saddle to fit in the gap. I couldn't look out as I get vertigo, and I felt like I was falling onto the stage. They got upset when I asked the ticket booth for a seat lower down with more leg room. I got upset at their thoughtlessness. Could all have been avoided if they remembered and accommodated my condition. They see it as me being controlling.

But back to you sharonbag, there is so much you can do to help yourself. Others have made very good suggestions here. I would also add, see your chemist to discuss your medication. They attack it from the scientific end what is supposed to help and what reacts with what, and they have no hidden agendas to sell x amount of box y as the gps do.

I have a friend who has google map holidays. He picks a random place, and streetviews it, wanders around all over the world. Not all places have streetview so he uses arial view. Its simple fun and passes the time. He forgets his worries for a wee while too. He wikis for more info.

[sharelle]

Hi, welcome to the site, I am new too but finding it helpful. My advice would be to decipher the pain, is it nerve pain, muscle pain or bone pain and if you have all 3 note which is worse and try and manage that one. For nerve pain there are drugs specifically for that such as amitriptyline, gabapentin, are you on these? For muscle pain drugs such as codeine, paracetamol, morphine are good. What drugs are you taking? Alternative therapies such as a TENS machine is good for nerve pain too. Ask for referral to NHS pain clinic, my local one is very good. From a psychological point of view I take an antidepressant as it helps me cope with my pain and for some it can help ease pain. Let me know what you are taking. Sharon

[sharonb45]

Hi,thankyo to everyone for there response,im trying most of the things people have said about and im realy grateful for the ones i havent and may try them!!! sharelle iv got realy bad nervepain in my bum and down my left leg into my foot ect,iv tried lots of nerve pain tablets but because im on such high sose ov morphine patches 200mg i have such bad side effects,i am trying to reduce these but its so hard but im havving awful effects from these too!!! thanks again eveyone.x

[moggiemay]

Hi Sharon. Sorry you are in such pain, You are on a very large dose of Fentanyl 200micrograms, Is that two patches? have you been to a Pain Clinic.They can perhaps give you a Facet Joint injection into your spine,It is Local Anaesthetic. You can also get Lidocaine patches to put on your back, Trade name is Versatis. I joined Pain Concern a year ago, but never been on this site..Be in touch if I can help

Kind Regards Moggiemay x