How do I cope with the excrutiating pain

Hi juliet10258

I have just read your post and i am sorry to read that is how you how feel at 40! I am on morphine patches and oramorph and other medication as i said to Arran103 i have had pain all my life well since i ws 10(now 59) so i do not know a day without pain so i know how you are feeling!! I cant remember all the meds i have been on over the yrs and i have been at some really dark and low places at some times in my life more so when you cannot speak for the pain it is that bad? but it seems as if you have a good family and i think that helps a lot.Hve you tried to take your meds before you do anything (consultant told me to try it!!) Can your GP not refer you to pain clinic? I found it helped a lot.Made some good friends and still meet up once a month.well enough of me rambling on done the same when i posted to Arran103 LOL take care and hope to read your nxt post soon jeanette    

 

Hi Jeanette 

thanks for your reply.  I have been to the pain clinic and they tried an epidural in the cervical spine but it did not work.  Considering that I have tried every drug they said there was nothing else they could do.  But as you said you have to try to keep going on even on dark days.

thank you for your message it is nice to hear from others in a similar position xx

Hi Juliet

Good to hear from you although not under the circumstances.   Like you my pain is 24/7 with an odd hour pain free and I too  have to rely on my partner and daugher for most things.   Just had a really bad two days

and been in bed, crying with pain and trying everything I could think of to relieve it.   Nothing worked.   Good to hear your comments on Duloxetine as I have been pesribed them but not used them.  I feel I am spaced out enough with morphine tabs and oramorph liquid plus 30 other tabs per day.  I am at the stage today that I feel I might try them as I need to stop this pain.  It just goes on and on.  The fact that it makes me nauseous shouldn't be a problem as I am already on anti-sickness drug for morphine and another anti-sickness drug which I put under my gum as sometimes the pain is so bad that I vomit all the time.  The fact that it might make me loose weight would be a problem as I cannot keep weight on.   I loose round 7 lbs every few weeks with vomitting, put it back on again and then loose more.   It is a continuous struggle.  In between  pain bouts I eat as much sweet things as I can to put the weight back on and give me energy   It's an ongoing struggle as you will know.   Your story sounds just like mine although I am 67 but was an active 67 year old.   Now like you I can do hardly anything.   Was supposed to have a few social events this week.   Having to cancel one tonight as I am not well enough to go out..Hoping if I rest up I will be able to go out Friday and possibly Saturday.   It is soul destroying no being able to do all the things you used to.   Like you counelling wasn't much good.   Just decided to stop seeing chiropractor as I feel it is not helping at all and am going to see friend who does Bowens (like acapuncture without needles) so will post on here if it works for me.   I talk to Jeanette so keep in touch with both of us.   we may not be able to help much but it is good to be able to talk to someone who undersands what you are going through.   I really feel for you as I know what it is like to be in so much pain and not be able to do much about it.   I try both ice and heat.  Ice works best I think as i am told it reduces the swelling.   This site is a God send for me as I knew of no-one else who had my type of illness.  Keep in touch Juliet.   I have a good moan on here now and again but it's good to let it out because no-one else understands although I have a wonderful partner who sympathises with me and says he doesn't know how I sufer the pain.   I couldn't manage without him or my daughter who do all the household jobs I can no longer do and run me wherever I need to go.  Had my driving licence revoked a few months ago as i am on too much morphine although I admit driving was painful so I very rarely used the car but it takes away another little bit of independence.Take care.   Thinking of you.

Arran103

Thank you for replying to my post.  I post on here frequently and talk to quite a few people.   Its so good to be able to have a moan and talk to people who understand how you feel.  Sorry you too are in the depths of this horrendous pain.   I am just going through a really bad patch just now.   Sometimes I get a few days respite when I can cope but it has been constant lately and taking its toll on me mentally and physically. I tried chiropractor for 8 sessions but it did not help.  I am also at the moment trying Bowens which is like acapuncture without needles but as yet it is not helping.   I cannot do acapuncture as I pass out so unforunately it is not for me.   I have pain patches, 30-tab a day including 60mg morphine tabs twice daily plus Oramorph liquid 4 times daily. I will see doc tomorrow but I think all he will do is up my morphine yet again which I am trying to avoid.   A lot of meds I cannot take as I have asthma and I have bad reactions to others so I am stuck with what i have at the moment.   I use both heat and ice which help to a degree and have to sleep sitting up.  Tens machine didn't work.   What is Zanaflex and what is it used for.   Just had a bad experience with Duxolene as I vomited for 24 hours with it.   A;though my pain is in my neck, head, shoulders, arms and hands it is now in my legs which worries me.   At the moment my arms are worst.   Feels like someone is trying to saw them off.  I also use two tennis balls and use pressure with them against my neck and head.  It is very painful but when you stop pain is lots better.   A tip from the chiropractor.  Just have to get through next few days and hopefully this will calm down and gave me a few days respite.  Sorry you are suffering this horrendous pain too.   This site is great to talk to people who understand.   Thanks for your reply.   replying to you takes my mind off my pain for a while.   Keep in touch and let me know what Zanaflex is used for.   I wil try anything if I think it will help.  Take care and keep posting.

Arran 103

Thank you Daniel for your kind words. I am taking it very much one

DAy at a time pain wise. Tried everything there is to try and nothing

Helps. I am just trying to enjoy the good days when I have them. I

Take around 30 tabs daily plus morphine but nothing really works. Best

Wishes to you in your search for a cure. I haven't found anyone yet

Who has totally found anything to cure them. Thank you again for your

Kind words

Arran 103

Hi Pam I sympathise with your pain. I take 8 paracetamol daily 4-5m

Diazepam 1-60mg morphine tab twice daily 3 anti-sickness pills daily

Among other tabs plus oramorph liquid as needed. Like you j often

Wonder if pain would be same if I stopped pills. Haven't had the

Courage to try. Been on gabapentin pregabalin and countless other

Pills which gave me too many side effects.

I just live with my never ending pain on a daily basis. Extra diazepam

Works along with anti-sickness pills which I put under my gum but

I think they mainly knock me out bug I don't mind as then I don't

Feel the pain. I've tried everything from Bowens to osteopth but

Nothing helps. I was advised not to use collar as it can make your

Neck go into spasm which mine has done.. heat or ice help or two

Tennis balls wrapped in tights and pressed very hard into base of

Skull. It hurts like hell but pain goes when you stop. Like you I have

No life now. Cant do housework shopping wash or dry my hair

Without extreme pain.I don't know what I'd do without my partner to

Help me. I also get depressed but refused anti depressants. I am

On enough pills and they won't take the pain away. Take care and

Just do your best. I still go out with my partner when I can.

Often we have to come home early cos of my pain but at least I get

Dressed up and put some make up on. Makes you feel better.I've given

Up on a cure and just try to enjoy the few good days I have. The bad

Days I try go get through as best I can and sometimes that means

Screaming and crying my way through it. Keep in touch. It's good

To let it out on here as we understand the pain. Take care.

Arran103

Hi all

I tend to agree with pam26274 about the dependency on meds becoming a problem in itself.  Certainly it can be really difficult to lessen intake because of the 'dubious' relief they offer,  but I'd never criticise anyone's right to choose whatever they feel helps.  Having said that,  I'd also say that reducing the drugs can kickstart a different type of approach to self management,  and I'd have to say, a much healthier approach. Looking back, I think my own reliance on meds years ago was some kind of desperate wish for a 'holy grail' treatment, which simply didn't exist,  and once I got myself over that psychologically,  I founf I could adopt a take it or leave attitude to meds. There are obviously some critical phases of pain where the meds still come in handy,  but, unlike years ago,  they are less and less for me now.  Some might say to that 'Lucky you !',  but I don't think like that.  I'm still in the same boat,  it's just that I manage the whole C/S thing differently.  I use altered sleeping arrangements to achieve what was never possible, even with the meds.  A repetitive sleeping regime, I believe,  helps to continue, and even worsen,  symp[oms which are otherwise somewhat controllable by means of adjusting regular sleep patterns.  A nap, or a sleep, on a sofa can offer up surprising changes (usually takes a couple of days initially for adjustments to take effect),  and since adopting these methods a few years ago,  my meds are now less than one tenth of what I used to consider necessary for any sort of comfort.  The over reliance on meds  is, unfortunately,  a bit of a no hope cul de sac, whereas an exploratory attitude to self management can do wonders for the spirit.

Re the collar issue (soft collar I assume)...I did try that many moons ago and found it uncomfortable....there's no escaping a continual reminder of discomfort.  Certainly no effects whatsoever, except discomfort.  I think draughtproofing the room you sleep in is much more important.  It's the aches/pains that set in whilst we sleep which stay with us throughout the next day.....fix the sleeping environment, and adjust sleeping patterns,  and the cycle of those repetitive symptoms can be broken, and the effects lessened.  That's an achievable goal, unlike the disappointing shangri-la -ism of ever increasing med doses.  I do sympathise with anyone living in the med reliance zone,  I spent many years there myself,  but I just thought it's only fair to suggest there are other ways.  I would probably go ballistic if anyone tried to take my meds away,  I need them for emergencies....but emergencies only.

Gerry

Think my main reason for stopping the pills apart from no sleep was the weight gain to my stomach, the amitriptyline started it, was going to turkey for pals wedding last September, lost the weight & got back into size 8's I wore before I had my youngest daughter in the June, I got changed from gabapentin to Pregabalin my stomach grew with them too, i wouldn't mind the weight gain but it was all to the front of my stomach so I looked 8 months pregnant, went up to a size 14, which is a nightmare when all your clothes are an 8 or 10 lol, slowly getting rid of it, more a 12 now, I still have pills for emergency use but hardly take them as I still feel like they do nothing, the Pregabalin where the worst for me, half an hour after taking the very first one I was bouncing off the walls like I was drunk, then was on 8 a day & they done nothing, even diazepam done nothing, next step would've been morphine but I hate the spaced out stoned feeling I used to get at the start with all the pills & didn't think it fair on my now 7 yr old. 1 good thing about not being able to carry anything is now my eldest has no choice but to carry the heavy shopping bags, typical teenager who moans about having to do anything lol. I'm just glad I can sleep at night now, though no more laying on the sofa as that really hurts my neck, guess you just learn what you can & can't do, though we can all live in hope for pain free days lol xx

Hi Pam

I'm in London,  but I originated out of the Celtic primordial soup....obviously can't define that with any precision until I'm sure if the co-respondant is 'Better Together' or 'Yes' !  We tread carefully with our perceived unnecessary ethnic delusions !

Also,  I'm not really at liberty to discuss dress sizes...I'll leave that to the experts (from both genders !).

What can I say...yes, you're right about the meds...they just mask the issues, although necessary at times.  Much better to know what might be kicking off each symptom, and then dealing with that,  rather than, usually unsucessfully, attempting to mask the outcome.  THe med relaince is just something the professionals offer because they can't come up with better strategies,  and that just demotes us to willing participants in their lack of knowledge about C/S.  We can do better ourselves because we are more familiar with the everyday dynamics of a chronic condition,  and that should open a doior for us to explore more appropriate ways of treating ourselves.  The meds can stay in the box until I run out of other options !  That choice exists, despite any perceived discomforts it might arouse.

Sorry to hear the 'sofa' thing doesn't seem to work for you.  Your sofa may be unsuitable....I prefer a soft comfy sofa with low soft arms, and good pillow support,  and remembering that, at first try,  it always takes a few days for effects to kick in....readjustments take time.  But, if it doesn't work for you,  I wouldn't quibble.  Be glad to hear of any other methods you've vtried, whether sucessful or not.  All helps to build up an alternative guide to self management,  and that doesn't have to exclude regular treatments, or meds, when needed.  However, after many years of trying the regular stuff,  I found it wanting.

Regards

Gerry

Hi Pam I am in Dalry North Ayrshire - not too far from the coast and The Isle of Arran.   Love it here.   My problem is losing weight.  I vomit a lot with the pain and cannot take my dugs so have to either get doc in to give me injections or get carted off to hospital to have them intraveneously.   I have gone from size 14 to around 10/12 somtimes even an 8.    I loose weight, then put it on, then loose it again but stay around size 10.   Drugs don't seem to affect my weight at all -  just the pain and vomitting.   I eat lots of chocolate after a sicknes bout to put the weight on again and also fruit pastilles as they have lots of sugar and give me energy.   It usually takes me around a week to get back to normal eating habits after a severe bout.   My body just becomes so weak that I can do nothing for myself, not even shower or wash my hair.    But once I get over the worst I carry on until next time - usually every four weeks or so.   Don't like it but getting used to it now.   Just got pain at the moment in arms mostly and neck but coping.   Got our new electric bed and it really helps as I can put it into any positiion without mountains of pillows behind me.   I don't feel quite so sore in the mornings either so maybe it was worth buying.   Hope so.   Take care Pam.   Don't worry too much aout the weight gain.   Your wellbeing is more important.   My daughter has fibromyalga and chronic pain syndrome and has put on around 3/4 stone but she lives with that.   She used to weigh 8 stone.   So she has gained weight and I have lost it.    We laugh about it.   I had Pregabalin but like you came off it as I couldn't even lift my head off the table to eat my breakfast!   Some of these pills are horrendous.   I think they treat us like guinea pigs at times to see what reactions we have.   Well keep writing Pam.  This is a good place to get it all out.   Take care.

Arran103

Sorry to hear you're vomiting too, I hate being sick, did get cocodamol again from doctor but even taking 1 gives me really bad stomach pains, I only eat if I'm hungry which is no good with them, I agree with you totally on the guinea pig part, I just got fed up with the pills, pain & no sleep, so glad I stopped them, now if I get too sore I just go for a little lie down, I tend not to moan about the pain as much now, we lost my dad 5 weeks ago to lung & bowel cancer, all he was taking for it was cocodamol, stubborn old bugger wouldn't ask for anything else & wouldn't tell doctors how much pain he was in, typical old school, so now I care for my mum so takes my mind off my pain, she was brought into hospital last night as she collapsed in her bathroom, had the doctor out yesterday as well, turns out her kidneys aren't functioning properly so she'll be in a few days, think the break away from their house will do her good, meant to be going out tonight so will see how I am later as got no sleep last night, might have a nap this afternoon, sounds like the new bed was worth getting if you're not as sore in the morning, let's hope you continue to be less sore in the mornings, will speak with you soon.