I'm so sick of being sick: I'm... - Fibromyalgia Acti...

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I'm so sick of being sick

Sandy247 profile image
11 Replies

I'm absolutely sick to death of pain. I'm fed up knowing that I'm going to be in pain. I'm sick of taking tablets and suffering their side effects because of pain but most of all I'm sick of knowing that this is all I've got to look forward to for the rest of my life.

I've been to pain clinics etc and it's all well and good when your pain isn't too bad trying out what the professionals suggest but when the pain has you crying and screaming what else can I do?

I've got Oramorph in the house but that is carefully monitored. [My Drs don't like their patients to have Oramorph unless they are dying!] I take 100mgs of MST daily - any more gives me migraines - any suggestions?

As you can tell guys my depression is becoming serious. I'm already taking Duloxetine but I need more - problem is I'm on the highest dose and Amyltriptiline etc don't work.

I'm really in a bad place at the moment and I don't know what to do to get out of it. Any advice you can give would be greatly appreciated. Thank you.

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Sandy247 profile image
Sandy247
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11 Replies

bless you but really there is nothing you can do its hard for all of us and least you venting it out on here but like you i am in bad place right now in middle ( well say middle) could be start or near end of flare up and i am like you 3x amitriptyline a night citralopram 40 mg 20 mg transdermal pain patches and coc odamol and no restbite but i have warm baths and try and do what i can with wrist splints on for carpal tunnel too and think i now got ibs great but all you can do is go with it. its so hard to see people rushing about and getting on with things like you used to and sometimes still can on a good day but lately the good days seem very few and far between, please try to keep posotive and try to talk to your family/friends and gp how you are feeling. if you cant leave your p c on this page or show them what you have written you take care and hopefully you will feel a little better soon but remember your not alone on here love and soft hugs to you Diddle x

chorley profile image
chorley

Hi Sandy, sorry to hear you are feeling so down, i can understand about the pain and having to go in and aout of pain clinics, but please try as hard as you can not to let this illness beat you and know that here on this site you are amongst friends who all share your pain, take time to read all of the blogs and questions, there is always sombody here to talk to :)

CHORLEY :)

Sandy247 profile image
Sandy247

Thanks Diddle. There are a lot of things going on my life at the moment and I think this is why I am feeling this way. Usually I can deal with my fibro. In fact most people who know me don't understand why I don't complain but as I said to them 'what's the point? Complaining doesn't make the pain go away' And it's true. Usually, I just make do but at the moment I feel like I'm in a deep well and there's no way of getting out. It's great to know that there are others out there who can empathise and at times like this it is just what I need. No matter how well meaning my friends and family are they can never truly understand. That's why I am so lucky to have found this site.

Once again Diddle 'Thank you' you've made me feel better. Take care of yourself.

Sandy247 profile image
Sandy247

Thanks Chorley. It's great to know that there are people out there I can talk to and get advice from.

I love this site.

sueuk profile image
sueuk

Hi Sandy , Dont be beaten Ive been very low at times and found it really hard to cope , Just try and get through each day as it comes at the moment and at the end of it its an acheivement for you ! Summer will soon be here ( The Warmer weather helps me a little ) Summer days sitting in the garden thats what i focus on .

Take Care x

Rach1977 profile image
Rach1977

Morning, so so sorry to hear you are feeling so down. It sure is a horrible place to be and it feels like you will never be happy. I have been there as I am sure we all have.

Could you go back to your Drs and ask for a change in drugs? Maybe change your anti depressant? I am on Fluoxetine ( prozac) and i have to say it works wonders and now I wouldn't be without them. What does of Amytriptyline are you on. Could you consider coming off that and trying another drug? Sometimes if we are on one particular drug for too long we can become immune to it.Have you tried gabapentin, pregabalin/lyrica, Dosulepin????? I have been on them all and for me Dosulepin helps me loads!! Really feel for you. hope things start to improve soon, we are all always here for you!! xxx

Annie52 profile image
Annie52

Hi Hun,

It dos feel like a lonely place to be"In Pain". But onhere, this most blessed site ,we can all hold hands . We undrstand each other when we get to the end of our tether with this damed condition. I sat thank God for computoers, Online shopping & this site. Gentle hugs xxxxxxxxx

Sammicat15 profile image
Sammicat15

Having read lots of comments and threads on this site since joining, I find myself wishing there was a "like" button for comments made (as in FB and some other forums I've been a member of) because people often put into words so much better than I do what I'd like to say in response.

Sandy, am sorry you're having a hard time of things and struggling with your condition. The good thing is that you've found a group of people here who know just what you're going through. Good support is crucial, in whatever form it comes.

I've been on a raft of pills for both RA and FM for the past 15 years, currently Naproxen x 2, Ami x 3, Gabapentin x 6, Paracetamol x 8 (or sometimes Co-Codamol or codeine sulphate) plus Omeprazole x 1 to avoid ulcers from the Naproxen, and was recently prescribed Tramadol x 2 as well but came off it after 5 days due to the horrendous morning heads. My consultant wants me to go on Duloxetine too. I've been to pain clinics and psychologists for recurrent clinical depression and I've had also sorts of advice over the years, ranging from sympathetic to patronising.

I had to give up my full-timejob just over a year ago, losing the financial independence that came from it, almost becoming a recluse. It was like a domino effect. I was mid-divorce cos I might as well have been living on my own for all the help my ex was!

I hate being unwell as much as you do. I hate the limitations that FM has imposed. The best advice I ever had was to pace things steadily, determine reasonable expectations from each day, then break that day down into hourly increments to make things more manageable. Spontaneity often brings spikes of pain, so slow down and plan each day like a military manoeuvre and persuade yourself it's a normal way to behave.

Yeah right, I thought! But on my "rational" days, it works. Accepting that I'm human and fallible is hard, but then nobody expects me to overcome obstacles except me! Training the mind is hard but it can be done. It takes patience and trying to deal with the day not in the context of what I can't/can no longer do, but in what I can. Today is a sh*t day, full of pain, so I have reasonably determined that the chores can wait and my day will improve by doing sweet FA! That's my excuse and I'm sticking to it! :-D

Oh and life throws a lifeline now and then - I was lucky enough to meet a soulmate who knew what he was "taking on". He's sat next door (am still in bed cos it's a flare up mega poopypain day) and he's on hand for anything I need, including occasional kisses :-D

I hope your mood lifts, Sandy. I know where you're coming from. You're already in pain. Please don't beat yourself up on top of everything else you have to deal with xx

jazher profile image
jazher

Hi sandy,

i have not got much more advice that hasnt been already said.

Just wanted you to know that i wanted to send you a nice gentle hug.

kel xxx

Ebony profile image
Ebony

Try and find out if there is an FMS group in your area, talking to someone else who has the same condition face to face might help you.

Tiggerooo profile image
Tiggerooo

Hi Sandy, so sorry to hear the place you are feeling you're in at the moment. I can totally understand and its a horrible place to be. The thing, as has been mentioned in the blogs, is to hold onto the fact that on here we are here for each other (I'm a newbey not long signed up) and its so nice to see the amount of support and care there is on this site for each other. Couldn't believe my luck when I came across it-makes you feel less lonely.

I sometimes find Visualisation Therapy a helpful tool at times-transferring the various pains your'e feeling into more positive things in your own visualisation - difficult to put it all into words as everyone will have their own 'positive happy place' in their mind that they can visualise. A lovely caring lady once taught me the VT when I had to go through a time of lots of painful hospital procedures and was terrified of some of them-it helped me a lot with various different things.

A friend of mine was reading an article recently in the newspaper all about something called Mickel Therapy. A book has been written called:Chronic Fatigue Syndrome ME and Fibromyalgia -"The Long Awaited Cure".

There is a website incase you would like to look into it to see what they say, and the site is: mickelreversetherapy.com; and also an email contact if wanted too: info@mickelreversetherapy.com. I haven't had a chance to take a full look into it yet but I thought it worth mentioning to you just incase you hadn't heard of it or were interested. With being a newbey I haven't read all the blogs to know what is or isn't known about different things as yet-I am learning too and would be happy to hear others stories. I have just started seeing a Pain Clinic Psychologist who is absolutely passionate about the subject of this illness-a rare and lucky placement for me, and she is lovely-if I find out anything of great interest I will keep my blogs going on the site incase any of its useful for everyone. Shocked to find out the depth of the problem of this illness.

We are thinking of you Sandy and truly wishing for things to improve so you can catch your breath again. I think having this site is fab and I noticed on emails tonight there are about 30 per day in my inbox! Guess it will keep my mind off my pain. I have the ME/CFS, Fibromyalgia, Chronic Pain, Severe IBS and COPD along with small hangers on of lesser ailments. I have been shocked to find out that sooooo many more people than I thought are all suffering with this illness, and typically one of the 'invisible' illnesses!!-easy to understand someone with a broken leg in plaster, etc... but there is nothing to see with this illness.

My thoughts are with you Sandy and I am heading off to my bed now sending some good vibes your way in the hope that tomorrow is a much better day for you-I sincerely hope so. Keep reaching out to the group as looks like this will be a first class place to hold onto and get to know like sufferers. Take care, and my apologies for the length of this blog...I've always been a blether!! 8-) Warm caring hugs are floating through the ethos to you.

Thinking of you XX

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