I'm starting to feel I am losing grip on reality. Weird thoughts that are not like mine. Lying on the bed knowing there is only one option left for me. My food sickens me but I want to eat. This happens in the afternoon and evening. Its been going on for a few weeks. I've been taking more Oramorph recently.
As I type it seems not plausible but as soon as my mind gets control again its overwhelming me.
I can't get away from the pain nowadays especially since my trigeminal neuralgia has joined in sometimes for an hour a day when I'm trying to deal with the back pain.
It feels like my mind is scrabbling about trying to get away and I'm creating or searching for craziness to hide in. Its very scary and Im at a loss.
I do need some help please
Dee
Written by
deejames
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Please please please phone your GP tomorrow and ask for an urgent appointment. Tell GP what you told us, even write it down if necessary if you can't speak to him/her.
Sounds like meds need reviewing plus some assistance with mental health.
The pain makes me reach for the Oramorph which I think is twisting my mental state.
I've got an appointment in two weeks with the Psychatric team. It will be more medication and my body can't take any more. Its weeping and pleading for release from this assault.
The pain team are supposed to "tweak" the medication are they not. I think my medication slot has been used up.
Its the meandering crazy thoughts whcih lead me into not being able to follow a thought pattern through. Not being able to think properly about anything
I do appreciate you replying guys I just can't face more talking to the doctor.
I am sorry to read your post about how you are feeling. You mentioned you have been taking more Oramorph lately. Has the increased amount been approved by your Doctor? We need to go very careful........drugs can play havoc with your mind.
Try to find something to distract you from all that is going on in your mind. Is there something on TV right now which could maybe help you......I am currently watching the Royal Edinburgh Military Tattoo which could help or the type of music could make you freak out even more......so be careful what you choose. Maybe you have a video or comedy you could put on. Try to distract yourself from these thoughts as much as you can. If you don't succeed with distraction techniques I would say that if these feelings cannot be controlled that it is an urgent enough situation to call out a GP or to go to the emergency department if they refuse to visit you. Be sure to ring your GP at least first thing in the morning.
Pain can cause loss of control especially when your are taking medications with all sorts of side affects so please, please do not lay there on the bed just dwelling on your pain. Join FB or Twitter and try to think up some Tweets to send........all this sort of thing can help distract you from the pain. If you can't sit up have you got something you can read whilst you are flat on the bed. I have terrible back pain and there is nothing worse when it is so bad that you can't sit up and do things to distract your mind from dwelling on the pain and the thoughts rushing through your brain.
Let us all know how you are feeling and remember we are here for you and thinking of you. I will be here for a few hours yet.
Dee I am so concerned about you. I learnt something which I like to work on. If you can say your pain is say 90% of what you can tolerate........then work on a plan. Maybe you can relieve 2% by just looking out the window and thinking of a rainbow or a Golden Moon or the rolling waves. Maybe you could relieve another 2% by stroking your arms............no need to hold them up........just cross your arms over in front of you and use the right arm to stroke the left upper arm and shoulder and the left arm to stroke the right arm and shoulder. Maybe you could distract yourself a further 4 or 5% by watching TV or a video........make sure it is a comedy or something light hearted. Do you have some hot water bottles or heat treatment you can use.......that may reduce pain by a couple of percent too. Now you see the aim? What we are trying to do is add and add things so that we can take the pain down a notch or two. It may be that talking to someone would help. If you would like to talk to someone you can ring the Samaritans......they are always there and willing to listen. If you would like to speak to someone who suffers in the same way as you do ..........please let us know so we can find someone who can talk to you.
In the long term I think, if it were me, I would be thinking that this is a terrible side effect from the drugs and I would be wanting to reduce the pain meds really really slowly. It may not be possible for you to do this and the pure thought of it may freak you out..........if it does then don't even try it!
And look we are talking now...........so I hope this will help you.
Twinkling star its not the intensity of the pain it's that it's constant and multiple. Lumber spine ,sacrioilic joints (which give me pain all through my buttocks down my thighs) . I have trigeminal neuralgia that used to be under control but now gives me attacks lasting up to an hour several times a day. Then add in all the stiffness and pain around my pelvis due to my lack of movement and flexibility..
A GP will just up the doseage of morphine. Oh and no I'm not taking unprescribed Oramorph. I can take it every 4 hours but it leaves me confused and bewildered which adds to the utter misery.
I can't really see any reason to prolong a life that is so miserable and will only get worse .
Hi Dee I really feel for you, I seem to remember you saying that you had problems with your stomach after anti inflammatories, are you taking anything to help with the stomach discomfort I know my daughter feels very sickly with a similar problem, she feels very low at times, I don't know what your family dynamics are but it's normally my grandkids that pull me through very low days, I have been stopped my epidurals in my lower back which gives pain down my buttocks past my knees with nothing to replace the effects these pains give you. Back to you please please keep posting on here for support we are all here for you keep your chin up even though it's hard, sending lots of gentle hugs to you, let us know how you get on with your GP
Thank you Sheryl for remembering a about the anti inflammatories. They were a bit of a life line pain wise as it seems to be inflammation that causes most of the pain . Without them the pain has increased a lot.
The nausea is horrible but I find I can eat bread, biscuits, cereal and fruit. A bit like morning sickness. My poor daughter outlaw was throwing up this morning. Not nice if I remember.
I have stomach issues and take Zantac (Ranitidine) and Buscapan it does help with the stomach pain and does help to keep the sickness at bay even the chalky type stuff helps. I would be really interested in anyone who could make something like the NSAIDS work, without the stomach issues!! It is affecting my pain at the moment and having been refused any more epidurals doesn't help either. Did you say you were starting the pain management course tomorrow I would really be interested to know you get on with it as it's the only thing my pain clinic has come up with for me, they haven't even attempted to look at my meds which most of them I have been on for over 20 years.
Good luck with course hope the pain keeps manageable and take care.
Sounds a. It like my Pain Clinic. They seem to deal with one thing at a time. Medication. Procedures. Pain clinic. No going back if things change . I needed a re refferal when I had increase in lumber spine pain. I'd like someone to do an overhaul of my meds not just increase doses or stick another one into the mix.
I'm sure the extra pains in my bones is psychosomatic or caused by tension and stress. To suddenly have pain in many more places almost overnight can't have a physical cause. I don't dare muddy the waters though.
Why were you having epidurals Sheryl and why did they stop ?
DI had a bulging disc causing nerve pain down both legs, I have been told it is dangerous to have more than three, my pain consultant has just retired and he was willing to do them as long as they were giving relief but the one that has replaced him is stopping most people's injections. My GP is very good he is doing some research himself and will refer me elsewhere for a second opinion.
Oh Dee my ear friend what are you going through? What can I do? Ca;; so,eon? Think of something noce like your lovely hens. They need you. And your garden.
Please call your GP urgently in the morning and let us know.
Yes, but so can some of the opiate pain meds. Sounds like you need to get your pain under much better control. Can you ask to be referred to a pain management clinic? They are much better at helping you manage pain than any GP. Also, are you getting specific meds for the trigeminal neuralgia? Most pain meds just don't touch that, but meds like tegretol (an anti-epilepsy drug) can work wonders.
Just out of interest, I had really weird thoughts kind of like that when I got put on both SNRIs and SSRIs for pain control. Odd that meds used for mental health problems could cause even worse mental health problems.
Earthwitch. And everyone else who was kind enough to reply Thanks for your reply. I'm on Tegretol for the TN. But my dose is not working any more. It has a very very soporific effect on me ( as do most meds) . When I increase the dose I just head for bed as I cna function.
I'm"with" the pain clinic and about to start the Pain Management Programme tomorrow. They have"done" the pain meds bit of treating me it seems. I wouldn't accept the drug they suggested. I forget its name Duxulene or something but the interaction with my other treatments seemed too much of a risk. I have alopecea and have drug treatment for that. Maybe I should just let my hair fall out and take the treatment. It looks a bit weird already. Maybe if I care what I look like I want to live after all. No it doesn't factor.
I have an appointment with my (new) GP tomorrow but its for something else. Does it make sense to say I can't face talking about how I feel.
I'm a bit late for this conversation but I understand how you feel... I think...Duloxetine turned it all a roundfor me... I wrote down how I felt and handed it to the GP. It made such a difference to how they responded to me and it felt great to have someone behave kindly towards me after so many years of indifference etc...
Yes! Chronic pain wears away at the mind until you cant face going on. fight for you! Tell someone how you feel. I think we often hold back telling people how we feel coz the response is often so poor! It makes such a difference having some high quality report. Dee let us know how you get on... I think everyone here is worried about you and wants to help. Big hugs! Xx
So it worked for you Boozybird. I like the idea of writing down every thing I feel and just giving it to someone. I'm on Sertaline very low dose at the moment . I still feel that it's the pain and the medication that's making me feel like this. I was OK for about 20 minutes just now but the Neuralgia is starting again. If I take the Tegretol I can't drive and my car needs picking up from the garage. Round and round. There is no where that feels comfortable or comforting.
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Sorry Dee for not replying sooner. I don't seem to get reply notifications anymore! Bah! Did you go to the new GP and I thought you were starting pain mmgt? How are you today? I have this theory that the brain just looks for the nearest exit when confronted with chronic pain. We are solutions based as humans and the exit is a solution BUT it's a crappy one. You still care how you look.... Good! Most people on here are worried constantly about drug effects and their health - lol - it seems we're worried about the drugs killing us one minute then plotting our own demise the next. It's overwhelming being in pain. I try to name the feeling that's overwhelming me most and then try and take a breath. When I was too far I tried Duloxetine and after a couple of weeks the tears dried up and I just started to feel better in myself. The pain didn't change but the feelings did. I think I probably need to return to them again as I'm getting those thoughts crowding in again too.... We can fight. Big hugs x
I'm going to ask again about Duloxetine again but the energy has just gone. I have to see my GP today about something else and the thought of driving is a real killer. The pain is up a couple of notches today and its only 8.30. I'm usually not at this stage till 11.
Dee, you mentioned you had to stop NSAIDs due to stomach. Have you tried the cox-2 NSAIDs? I take Meloxicam without which I wouldn't be able to get out of bed either. Let us know how you get on later please? X
Now I haven't heard of them. Will investigate but after my endoscopy which is in a fortnight. Hospitals, GPs, pharmacists, psychatric appointments. Never ending but to no real conclusion .
Glad to hear you're able to persevere! For some reason (probably cost) they don't like to prescribe the cox-2 but they should! They're life changing for some. They keep me stable but if I overdo it and get more pain then that's when my mind goes and I go down the rabbit hole mentally. There's a threshold for pain beyond which anyone would go nuts. Keep talking to us Dee. All for one and one for all? ❤️
Dee....please let us know how you got on with your new GP. Also how did you get on at the other appointment......was it the Pain Management clinic you were going to. I wasn't sure. Anyway please update us on how you are feeling. Hugs to you. Xxxx
I am in a similer situation. I have suffered with various bodily pains daily, for the last twelve months. To be honest it has turned my life upside down. Allthough i am being treated for anxiety/depression it is the unpredictabilty of pains causing the a/d. I honestly do feel for you d/j. No one can possibly imagine how it takes over your life. I wish u all the best, sincerly hope your condition improves in time. Christina
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