Needing help: Over the last few months... - Fibromyalgia Acti...

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Needing help

SallyE15 profile image
17 Replies

Over the last few months i've not been in much. Sorry for the absence. My pain is out of control and my depression is getting worse. I am long overdue specialists writing to my gp to get them to send me to mental health services and the pain management team in seacroft. My gp has me on zomorph, oramorph, pregabalin (just doubled the dose), sertraline (just doubled the dose), vitamin d booster tablets as my level is nearly nonexistent, omeprozol (have a stomach ulcer from taking...), naproxen, paracetamol and been on diazepam. Its not working. I have an hours sleep at best but each time i fall asleep i have terrible dreams and wake up to migraines lasting a week or 9 days.

My parents have seperated not amicably, they are both out to try destroy the others reputation and me along with it. Living at my boyfriends and grandmas house at the moment. Cant stand the stress of being around either of them. They only truly want me when they want something ie my dad has been pestering for me to go home, he finally said why yesterday not because he missed his now only child (daniel my brother died 6 years ago of sanfilippo syndrome and a long term chest infection) he want to put more songs on his ipod. Unbelievable! They seperately have taken me to hospital 6 times in 3 weeks as my pains and symptoms are that bad, i had suspected liver problems (under investigation) and now a stomach ulcer along with the pain, aches, spasms, anxiety, headaches, exhaustion..... You know i'd be going on for hours.

Life cant go on like this, i really cant take much more nonsense, pain whatever. I have tried, i sit and randomly cry for my old life back, i know its gone but i just want to be more like my oldself and be able to partly control my condition, not have it ruling my life.

Gentle hugs and hope you have a decent nights rest.

Sally x

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17 Replies
TheAuthor profile image
TheAuthor

I am so genuinely sorry to read that the situation has shown no signs of improvement for you, and I sincerely hope that things spick up soon. Please do not be offended as I have pasted you the telephone number below for the Samaritans. I have done this out of friendship and concern for a fellow sufferer:

The Samaritans UK - Telephone: 116 123 (UK)

If you ever need a somebody to talk to about this situation please do not hesitate to call them. It is what they are there for. You can always come on the forum and vent to your hearts content if it helps you to feel better. Please take care of yourself.

All my hopes and dreams for you

Ken

Regnofibro1 profile image
Regnofibro1

Honey you just telling it like it is as we say here in Texas. As Ken said you can call and talk to someone or come on here and let it all out. Not sure there is anything I can offer you but words. I can't understand your problems because that is your life. What I can say is that I can look back on my life now and truthfully say I survived it. You can survive this too. One day you will be a old fart like me and you will look back and say I survived it. You may wonder how right now but in the end you will see it's because you are stronger than you think you are. Talk let it out do what you have to do to get through this time in your life! Because you are needed. Hang on and big hugs!

Redhots7 profile image
Redhots7

Sweet Sally, let them go , make the appts you need to and get on to improving your life the best you can . Stress makes everything worse . Concentrate on you !! Don't take phone calls if it is going to upset you . Sounds like you need a review of all the meds you are on and see if part of your problem is side effects ! One doc should have complete picture of what you deal with and find a good combination co-ordinate your meds to get you living the best life you can . Stay away from pity parties and negative people that bring you down . Baby steps at first, then you will feel stronger and still have bad days but not continuous . TAKE CARE OF YOURSELF FIRST. If you are not well, you can't help others thru their journeys. 😘 God has a plan to use you, let go and let him guide you, get in your quite place and talk to Him, BUT MORE UMPORTANT, listen to Him. He is still the only source you trust 😘 😘He will bring you thru it ! Waiting to hear all the miracles He showed you 😘

I agree with Redhots Sally. You do need someone to take a look at all the meds you are on as some might actually be aggravating the pain you are suffering. I, like you, was on a cocktail of prescribed medicine and only when husband thankfully took control and marched me into docs did I realise I was becoming like a zombie. Sleeping all day every day and not in a good place despite antidepressants. I only take 60mg Duloxetine per day now plus a large amount of vitamins and minerals and am starting to make slow progress. I have CFS/ME as well as Fibro. I am not saying that you should come off all your drugs but people with fibro can be chemically sensitive so a review of meds might be helpful. As for parents ... they seem very wrapped up in their own affairs atm. Perhaps you should calmly tell them both how you feel, if not face to face, in a letter. I think they should know what effect their actions are having on your health. Re your dad and his iPod... It could be he actually did want to see you but couldn't find the words to say so. Sometimes by finding a common interest or task such as putting music on his iPod allowed him to spend time with you without actually saying that's what he needed to do. Just looking at things from a different perspective. Sometimes our minds make up the endings to stories which are not actually the case and we jump to conclusions. Try not to let that happen. I am sure your parents both love you very much. They are just too wrapped up in their own affairs and maybe need that reminder that you need them both to be there for you too. Take care and make that review appt today. Write all the meds down on a bit paper so doc can clearly see what you are taking and get those referrals progressed. We are all here for you too so please don't ever feel alone. As Ken says the Samaritons are great just to have someone to chat to as well. Take care my dear Jax 💕

Aishah50 profile image
Aishah50

I want to start by saying you are not responsible for your parents happiness. You do not need to mediate to make things better and you don't have to get on their drama cycle of unresolved issues and toxic emotion. Parents can cause untold damage to their children by not holding them in mind and prioritising their children's needs over their own.

Okay that said, what do you want. Make a list of what you want to improve best case scenario and what would make a significant difference. Next you need to work out the steps to achieve your target. You don't need to do them all at once you can start with one and work towards achieving that.

For example: I want to improve my mental health. Steps needed: open my curtains everyday. Listen to a song that makes me happy. See my friend.

You work out what will help you to achieve your goal. The things is to take back control of your life, enjoy the small pleasures and fight for yourself. Tell yourself 10 positive things about yourself everyday. Once you believe you can take control of your life you can make small changes. If we live in the past we have no time to make a future.

Read through the posts there's lots of advice on pain management ect such as baths with Epsom salts for muscle pain and so forth.

Be the strong, positive person you can be and focus on what you can do.

Okay that's my inner Polly Anna vented........just stay positive, love the future you'll make for yourself and there's always support available. If you feel really down and have any suicidal ideation attend your local A &E department and get support. Look on your local council website if they have drop in services available for mental health issues. Good luck.

Tuscany profile image
Tuscany

I can definitely relate to how you feel. Coping with a chronic illness takes so much out of you without dealing with other people's stresses and selfish behaviour. I am not in contact with my family any more because they are very toxic to me. I also work with very selfish people who leave me in the lurch all the time.

I also share your concerns over your meds. Most of the time mine work quite well, but over the last few days my pain levels are out of control. Push your GP to help you. Sometimes they really do need a good push!

Take care xx

metty profile image
metty

Hi Sally, I am so so sorry for your situation, Stress is one of the worst things to bring on our pain ect..you have it in abundance, Is there no where quiet you can go and live with out all the stress and people only wanting you when you can do for them. At the moment you have to concentrate on just YOU!!! You are the most important person. I hope you can find some peace, I know we all go through our own struggles but it sounds like you are on the edge. Please talk to someone outside of your family. sending you soft hugs xx

MariLiz profile image
MariLiz

I am so sorry to hear what you are going through Sally. I think everyone has given good advice, and I can't add anything except to send you my best wishes and hopes that things will improve soon. Hugs MariLiz

SallyE15 profile image
SallyE15

Thanks everyone for your advice, its a very complicated situation. I've sent a complaint to GMC due to my GP's lack of effort and responses to my increasingly poor health. Not what i wanted to do but they gave no legit response to why they couldn't refer me to pain clinic and just keep pushing things for weeks on end. I cant live like this. I'm living between my boyfriends home and my grandmas. I'm already in touch with the Samaritans so dont worry about that. Its all getting to me at the moment. I'm sick of feeling useless, unwanted and ill all the time. I've had my hair cut so its not so difficult to manage, used to be mid back length, always had it long. Now its a long bob, one thing to make life a little bit easier. Afraid my opinion of my parents at the moment is not distorted, my whole family are angry at them for how they are behaving but dont want to get involved in fear of making it worse for me. Everytime i see my dad he goes on and on about my mum and whinging about her actions, i've told him i wish to be left out of it and its all driving me mad but he ignores it. Hence me not living at 'home' for now.

hi Sally its not nice when you going though hell like your are at the moment the doctors sometimes feel as though there in a world on there own, but as for you my dear friend your in here with us your friends and are here at anytime to help you to cope as best as we can your not on your own there are many with you and what to help its not easy we know but were in this together take care my friend Alan

Sallyannemay profile image
Sallyannemay

Life is difficult for you Sally and my heart goes out to you. Although I do agree about possible side effects of drugs what you must understand is that NO drug will help you when you have this much stress around you. As your father won't listen to you then I'm afraid you will have to cut him out of your life until you get yourself on your feet. This goes for all the current stress in your life. You have to be totally selfish.

I realise this is extremely hard to do but you are currently destroying yourself. If they don't understand that then they aren't worth having around you again.

My love surrounds you

Love From Sally

XXXX

Sorry your suffering Have you thought of getting your doctor prescribe you some Loranzipam there wil make you sleep Honey xx

SallyE15 profile image
SallyE15

My doctor wont give me anything to help me sleep 'as its addictive' yet has me on copious amounts of morphine (liquid and slow release) which is more addictive

x

Hello Sally,

I'm pretty much never on here as I spend a lot of my time moderating an online support group for people with spinal issues including incomplete cord injury. I wanted to read your post as it popped up into my email inbox and you sound like your head is spinning somewhat with everything you are having to process, both mentally and physically - it would be very difficult for anyone to deal with so just know that you are only human and you ARE still hanging in there... even if the thread seems a little thin at times (I bet).

The reason I am taking the time to reply is that I saw in an earlier post (headlines in your profile) that you are taking 300mg of Pregabalin 4x day - is that correct? I saw someone say in a reply here that a review of your medications might be an idea and I whole-heartedly concur! Do you see the same GP every time or are you bouncing around various people? My suggestion is a simple one - get an independent review by a different GP. I also saw that you have doubled(?) your pregabalin... that is a jump at those amounts and I really hope you refresh your knowledge (if needs be) on the side effects and just be mindful.

The next question I have is: what are your spinal issues? All of your symptoms are familiar to me, as a complete amateur, but I'm very interested to know... feel free to reply or send me a private message... or just ignore me if you don't feel like trawling through these things of course - I quite understand that feeling! ;)

Take good care of yourself... none of this is your fault and you deserve some little treats if not some bloody great big ones! :)

Gary ('Peachy' to my friends)

SallyE15 profile image
SallyE15

Going private isnt really an option right now as much as i wish i could. Morphine. Zomorph 20mg a day, oramorph up to 60mg.

Aishah50 profile image
Aishah50 in reply to SallyE15

Hi Sally,

If you are not happy with your GP change surgeries. Remember they are a General Practitioner so know a little about a lot! They are not experts in what you are facing, you are. I think peachy gave you good advise on having a review on your meds. One of the side affects of meds can cause an impairment of cognitive processes. This can lead to an inability to deal with everyday problems in an effective way further impacting in low moods and depression. I think the key is to book a double appointment with the GP in order to discuss your concerns fully, without feeling you are being rushed or dismissed. Write down questions prior to your appointment, so you don't forget anything and be direct in requesting a referral. If they fob you off ask them directly what the justifications are for refusing. Remember their job is listen and to support you. If you feel they are not doing this exercise you individual right to request another doctor. Best of luck.

SallyE15 profile image
SallyE15

Was on tramadol before. A heck of a lot of it and it didnt touch me. No drowsiness or anything nevermind pain relief. X

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