Please help...

[Catlover93]

I seem to be in constant pain every day lately. I don't know why this is, but It's really getting me down! my torelance to painkillers is just sky high, and I feel there is no way out lately nothing seems to be working! Is this normal? And does anyone else get this? (Pain everyday) If so, what are you doing to relieve the pain? I have been taking cocodamol every day for about 3 years now, then my doc will rarely give me tramadol, and he does usually prescribe me with oramorph but NOTHING seems to last long enough , and before I know it the excruciating pain is back.

My last couple of posts no one have responded, so please can someone help me out. I'm constantly breaking down lately my emotions are all over the place.

Thanks in advance

Xxx

[zanyv]

Sorry this may not be a helpful response but you're not alone!! I have the same crazy pain every single day and it's getting me soooooo down! People around me think it must be in my head as no one can be in pain all the time...If only they knew hmm 😔 I'm just relying on appointments after appointments I really want more answers 😢

[Catlover93 in reply to zanyv]

Thank you for replying zanyv, it reassuring to know I'm not alone in this crazy battle! luckily I have an amazing mum, and fiancé who have been my rocks throughout this experience, and I don't know where I would be without them! I hope you get the answers your looking for asap, and you feel better soon hun! I do love this website, and it's nice to speak to people who are going through the same thing as me.

Big hugs.

Xxx

[Mummy1982]

Hi hun.

Really sorry to hear you are suffering. I am also in so much pain all the time with my endo and Adenomyosis and I also have something going on with my bowel in waiting for tests.

I have been in hospital for 11 days because they are trying to get pain under control, they have taken Tramadol codeine and Cocodamol away from me and left me on oramorph which does help but does not stop the pain it dulls it.

I think your body dose get used to the medication you take and you become resistant to it.

I have had a gastro appointment on Tuesday and they basically told me if I carry on with the strong pain killers like tramadol and oramorph them my bowel will literally stop working and these pain killers kill nerve endings in your bowel.

I found that really scary thought so I am taking the oramorph but trying to reduce the amounts I'm taking it because I don't want that to happen.

Also I found out during my hospital stay they worry about you being on oramorph because you will build a resistance to it and there is no stronger painkillers than morphine.

Not sure if it helps with the pain hun but hopefully the explanation might.

Yoga helps me not all the time but when I force myself to do it on a ok day I do feel some relief from the deep stretching.

Jo xx

[Catlover93 in reply to Mummy1982]

Hi mummy1982,

Thank you for your concern and lovely suggestions! I just wanted to make sure I'm not loosing my mind, and that other people have pain on a daily basis like me!

Doc has been reviewing my pain relief for about 2 months now, because I have been taking them for so long. He took them off my repeat prescription, and makes me go to see him every time I need more which is quite annoying when I can't function some days!

For some reason, like you, they seem to prefer giving me oramorph rather than pain tablets. Which seems bizarre to me? Because morphine is stronger.

I will definitely look into some yoga classes. A few people have suggested it to me, ill have to have a browse on the internet to see my nearest class.

Thanks again,

Much appreciated.

Lots of love

Xxx

[Mummy1982 in reply to Catlover93]

You are welcome. No hun you aren't loosing your mind honestly. I had the same things going on as you, they were making me go on every 2 weeks to discuss pain killers and trying to get me off them and I was im in so much pain.

I then changed my Dr and i have to say that my current Dr is great, she I very understanding of the pain I'm in on a daily basis and how it is affecting my quality of life, do you see one Dr or a different one each time? My previous Dr was a man and current one is a women and she is much more understanding about the endometriosis.

They shouldn't be making you wait for pain killers when you are in bad pain. That is crazy thay they would prefer to give you oramorph. I'm currently on it daily due to the pain but I'm trying to take as little a possible because I'm worried about long term effects of it.

Yes definitely look it to yoga I have just done some for the fist time after being in hospital for nearly 2 weeks and it has really helped it felt so good to stretch my legs, back and hips.

I hope they get you pain under control for you soon hun.

Jo xxx

[Kaysha40]

Hi I'm kaysha, I really do feel your pain, every day is a struggle constant pain makes you feel weak,tired,emotional and alone I'm lay here now and my back is killing my legs hurt my stomach the burning drives me crazy. I have two three year olds there in bed now so I can take co codamol but your right they only just take the edge off. So what I'm about to do is put my heat pad on it's not a cure but every little helps. I've started using guided meditation for chronic pain on u tube when I need to. Your mind is a powerful tool and if ninjas use it to block pain lol then I'm gonna give it ago.I need all the help I can get. I've started to burn coriander oil in the oil burner it helps with stress. And I'm trying really hard to get rid of the gluten in my diet and drinking loads of fruit smoothies and taking vitimins. I still have my days when I want to sit in my room and cry because I'm frustrated I like and need to feel in control and this makes me feel that the endo controls me it dictates what my day is going to be like what I can do what I can't do. I'm going in hospital on the first of June to have a mass removed from my incisiol scar from c section that has been growing for 3 1/2 years they also found endo in several places in my womb and fibroid ( I do know I'm lucky it has shown up on ultra sound ) but it also means they are only seeing it because it could be chocolate cysts. I have every single symtoms of endo and it took them 25 years to help me I'm 40 now. I know I'm lucky to have my baby's my eldest I had at 18 and then I could not get caught for 8 years then I got pregnant and I miscarried at 12 weeks and then I got caught 19 years later. It was only when they saw the mass growing and I did the research and made them listen 25 years of constant pain. I had had as much As I could take . My daughter and my grandaughter who are three ( she also lives with me ) I need them to help me so I can run around with them pick them up dance etc and if not I will research this bloody disease an empower myself in order in have better days. So much love to you I just want you to know that I truly understand you x

[Catlover93 in reply to Kaysha40]

Thank you so so much for your suggestions, they really mean so much to me! I will have a look online today to see about the meditation you suggest. I am willing to try anything at the moment!

Your story is very sad, and im very sorry you have had such a terrible experience..

It feels like forever since I've finally got answers, let alone waiting 25 years. I must be thankful they have gotten to the bottom of it now.

I feel really lucky to have all you lovely ladies to talk to when I'm feeling down. I'm so thankful, and I appreciate every suggestion yourself and so many others make.

Thank you,

And lots of love.

Louise

Xxx

[Mabes]

Have you tried adding something like Naproxen (which works on prostaglandins) to your co-codamol?

I agree with mummy1982 that taking opiate based painkillers for years is unideal. They do slow down motility in the body and can cause long-term side effects/damage. At the same time, the pain is relentless and needs to be managed. Have you ever seen the pain clinic? If not, perhaps ask your GP for a referral.

I also agree with previous posters that there are certain non-medication things to do to try to cope. Everyone has different success/experience with these, but for me coping strategies include: a warm/hot bath every day (not very eco friendly!), using badger balm muscle rub and bodytime.com/anti-inflammat... on my lower back/hip, listening to snatam kaur (often used as accompaniment to yoga classes), guided meditation/body scans, mindfulness and a TENS machine. I feel on some level I have to accept and detach from the pain.

Another thing I've noticed is that playing a game on my tablet does concentrate my mind on something else so I'm not constantly noticing the pain (for an hour or two).

[Catlover93 in reply to Mabes]

Hiya mabes!

Thank you for your reply!

Yes I have tried naproxen, it's never really helped to be honest. Ibuprofen is the only thing that seems to help combined with cocadomal, but I've heard your supposed to take it a couple of days before your pain because that's how they work? But how am i supposed to know when im going to be in pain? Lol!

I know the painkillers are probably doing more damage than good to my insides, but it's impossible to function without them as they do ease the pain a little. And yes, I am on the waiting list to see a pain clinic, I haven't heard anything yet

I will look into that muscle rub, because I haven't heard about that before, and anything is worth a try! I am very grateful of all the suggestions you have made, and I will definitely look into them for some kind of relief! I have a tens machine too, but some days I am very tender and the sensation it gives on my tummy can encourage more pain, i find. I think if my pain is dull, and achy the machine is effective. But if my pain is severe, it tends to irritate it.

I do agree,

Some things tend to take my mind off it. And i think that has been one of the main issues lately, because I am off work with pain I have more time to think. I usually talk to my mum, or go on my phone to distract my mind from pain.

Lots of love,

Louise

Xxx

[Mabes in reply to Catlover93]

Ibuprofen should be okay long term (I've been on it for years for non-endo issues and I'm still here lol!). I think the main thing is to be diligent about taking it with food to protect your stomach.

What you said about the TENS makes sense. I think if I have crampy pain it can make that seem more crampy.

I wonder if acupuncture might help? I've never tried it, but I've heard some people get good pain relief from it. I might try it at some point this year.

Also have you got a heating pad? I find those disposable heat packs that stick on are quite useful if I have to go out.

If you want to focus on something else perhaps get an adults colouring book. It's quite therapeutic.

I think one of the things making my pain worse is that because I'm in pain I probably tense my muscles around the painful areas and that then creates its own pain. This is one reason I've been very diligent about warm baths, a gentle walk (to stretch my body) and the muscle rubs etc. If I can relax those muscles a bit it does decrease my discomfort slightly.

[Kaysha40]

I just wanted to comment on the acupucture I went to see a lady based in stockport. 5 years ago because of my hormones, heavy periods, pain ect the docters wouldn't help me as a young girl made me feel like a fake so I had stopped trusting them to help me. I had my first child at 18 then a miscarriage 8 years later and then out of the blue after I had acupucture I fell pregnant I now have a little angel who is 3 and a half I wish I could go back now for her to help me but it works out expensive with the herbs as well.

there is a 19 year gap from my eldest daughter to my youngest they are amazingly skilled docters and there practices have been used for century's and been proven to work.

I can not say they will cure you but I know she really helped me she helped me with the headaches,heavy bleeding , pain etc I became regular and most of all I truly believe I wouldn't have my daughter now if it wasn't for her. I can only talk for me.

Bless you all xx