No life.

I was diagnosed with fibromyalgia in 2015 after cancer ops and 9 infections. I have no life. I can't work. The pain clinic l was referred to decreased all my painkillers but l've had no follow up appointments for 5 months. I can't work. I want to kill myself because no one would bother anyway. I used to be so independent, now l don't want to wake up. That's if l do sleep. I've been thinking about it for a while. I don't matter, everyone has their own lives so l won't be missed. Nobody understands what the pain is like- constant physical and emotional distress. No one ever hears me crying. I pretend to be ok so my boyfriend won't ask me to leave. Then l think of booking a hotel room.

[Della30]

I am so sad to hear you are in so much pain and things are bad. I kinda understand how you feel but imagine how you loved ones would feel if you end it all. Especially if they realise you were suffering and hid it from them. Go back to your GP to be referred back to pain clinic. The NHS is great but it is so stretched and mismanaged that it is who shouts the loudest. Do not suffer in silence and those who love you will understand and support you.

[Melbourne-Girl in reply to Della30]

I totally agree with Delta30 and I have often found myself not wanting to be here. It’s my family that are keeping me here, even though they do not understand my medical al problems.

There are many people on this site who would be able to totally understand how you are feeling as they are experiencing it too.

Hang in there, I really feel for you and totally understand,

My love and best wishes in finding your way,

M-G xxx

🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

[Hidden in reply to Della30]

Thank you for your time and help.

[NLBC]

Hi mirror12

I understand the pain you must be going through I have fibromyalgia as well as a trapped nerve in my neck that cause severe right hand pain. Sometimes I feel like you with no one understanding what I am going through. But please don’t give up. Take it one day at a time. I wasn’t able to work and that was most depressing as I was earning a good salary. Then suddenly I am on benefits as being ill my savings ran out.

Do not give up because your family loves you and will truly be hurt and miss you.

Look at what the other members commented there is help from the nhs.

Please stay strong and we are thinking of you xx

[Hidden in reply to NLBC]

Thank you for taking the time for your advice

[Macblank]

My friend, don't despair, there is help.

Go back to pain clinic. What they do, is keep an open system of appointments... YOU call up when you want to go back..... Well that's what I've always found.

Are you free from the cancer? I hope so.

Fibromyalgia is nasty, but it doesn't have to take away your soul. Are you alone, or do you have someone special? If you have someone, tell them how.youre feeling, be open n honest. They live with you!

If alone, but close friends, get them to come round, and be honest with them n family.

There are proper pain patches, or tens, or meds to help with sleep. I am.not.alloerd sleep meds due.to sleep apnea... Due to waking as I stop breathing, I'm not allowed meds that knock you out, incase my auto wake function doesn't kick in, so I have to have different meds, to try to relax me.... They don't always work for me.

AT OWN RISK!

some find smoking a joint helps with pain n sleeping. It's not medical, and those with hidden or known mental health, can have side effects from it. Most seem fine on it.

I'm.sure some will shout at me over that, but I have friends with fibro n.MS who swear by it, now n again. I know for ms sufferers they can have a THC free liquid (like oramorph)... I think fibro should get it too... Ask the pain clinic about it.

My existing mental health is why I don't use it.

Anyways, don't give up, and don't despair.

[Hidden in reply to Macblank]

Thank you for your time and help. I don't know what to do.

[Macblank in reply to Hidden]

Listen to all the above. You will be missed.... At my lowest (and trust me I've been low!) I thought about the cowards way, but I couldn't let it win.

My pain.specualist write me a letter years ago stating.... We will never get you pain free... Of course pain is t a factor in pip FFS!

Every time I try to tell "medical staff" a decent day is 5 or 6, and standing to wash up 2 plates etc, sends me shooting to 8 in under a minute. I talk of it.like a .assive toothache, where if you don't eat/drink too hot/cold, or don't we at that side, it aches but bearable, but as soon as you drink a cold drink your head feels like it's gonna blow off!

No.one recognises the side effects of constant inquiring pain, with the depression, lack of libido, lack of umph, anxiety, low self esteem., Getting angry at little things.

This is why you MIST talk to those close to you, explain how you feel... Try my example of the toothache.

With fibro you do get better days, and try to enjoy those. This means learning to pace, learning it's not a lazy day, it's a rest day to recharge, so you can have a better day to go out.... Get out as much as you can and feel comfortable to do.

Don't go down the cowards way, and give in... Remember... Don't let the bastards win!

[Batty1]

Oh Freddie68Fm .....you couldn't be more wrong your not alone. I've been living a pain nightmare myself after thyroidectomy for cancer 3 yrs ago I went from fit to fat in a blink of and eye and not one doctor can seem to make my dreaded pain go away or help with my weight gain and to make matters worse once my endocrinologist said my lab numbers were good he threw me away like a piece of trash.....so sorry your having a hard time but your not alone and it just sucks.

For me personally I searched for some solutions to my pain problems because relying on doctors to make me better became more stressful then it was worth. I found that when I started taking Vitamin D3, Vitamin K2 and magnesium I could get up and walk around much easier (not pain free) and Vitamin B12 gave me some oomph.

About me: I developed Psoriatic Arthritis (attacks the tendons that attach to my bones) after my thyroidectomy and I do believe that I have fibromyalgia too, housebound for almost 3yrs and had to quit my job I could No longer stand or walk.

[klr31 in reply to Batty1]

You need to get your thyroid results and check them yourself. If you have had a thyroidectomy you will need thyroxine at some point. Your symptoms may suggest you need them now.

Karen

[Batty1 in reply to klr31]

I live for my thyroid numbers and I always been on thyroid meds since I can’t live without them.

Im currently on 100mg Synthyroid and 10mcg Cytomel.

[klr31 in reply to Batty1]

What are your results? Maybe you need an increase.

[Batty1 in reply to klr31]

Needing increase absolutely will I get one not a chance...lol ..... my lab numbers always stink no matter what dose I take I think some of issues stem from autoimmune issues and these Endos just can’t cope with patients that have more going on health wise then just missing thyroid plus I take immunosuppressive drug which is probably huge deal.

[Iluvgardening]

Please don't give up on getting relief! I will start praying for you now. I don't know if you are a believer or not. But, it doesn't matter the God I serve hears your crys and is able to help you. I will be praying for someone to come into your life and get you the help you need , I will pray for the medical staff at the clinic to have discernment in the best treatment for you to bring relief. Please don't consider ending your life, you will be missed dearly, I know how hard and frustrating it can be, I have dealt with unbearable pain throughout my life. Please share with your boyfriend, friends and family what you are going through and let them help you. Alot of the people on this thread know exactly what you are going through and have given you great advice, we don't know you but we care about you,because we understand your pain. The tens unit is great for fibromyalgia pain, there are good prescription creams that help too. Don't stop asking for the meds you need, if they can't help you at the clinic you go to, go somewhere else, get a referral or call around. Don't give up! We care about you and are praying for you. Hoping you get relief soon ❤

[Hidden in reply to Iluvgardening]

Thank you. I have been isolated for a long 5 years. I just don't know what to do anymore. I've been taķen off all the meds that helped.

My Dr's won't budge. All l want is to sleep just even for a few nights. It's hopeless. No one understands. I used to swim or take my dog out for 5mile walks.

[Iluvgardening in reply to Hidden]

I do understand, I have been at my lowest, dealing with pain & loneliness. It's so hard, but you can't give up! You have to hold on and have Hope that things will turn around for you. I am praying and will continue to pray that God fills your heart with hope and brings relief to your body. I am so sorry things are bad for you, it's a horrible condition. Most of us here suffer from horrible conditions and diseases. I have psoriatic arthritis, neuropathy, fibromyalgia... I understand the pain you must be dealing with, well not exactly, because I am not in your body,but I know what pain is. Please reach out for help from others and find a physician that will help you sort out what treatments will help you the best. Try to hang on to hope and reach out to God and others to help you through. ❤

[sandylo]

You have a boyfriend he would miss you . Ive been in agony since i had breast cancer 10 years ago have not had one nights sleep since ive been on cancer tablets since and they have caused it all

In my shoulder my rib cage at the back. the base of my spine my hips knees feet wrists and hands the only time im free of it is when im sitting. I cant walk far ie 50 yards then i have to stop. There must be many people like us but life has to go on. I was a war orphan at 14 months old when my dad died at the end of the war age 25 my mum was 23 when she died of tuberculosis i was 9 weeks old. She died so i could live i never knew either of them my gran reared me until i married age 21. I have felt like ending it all many times then i think of what my mum did so i could live on and how my gran took me on age 57 i owe them a lot and that stops me. Please keep fighting on. a year after my mum died there was a cure for tb i keep hoping there will be a cure for cancer and pain relief it all could be just round the corner xxx

[Hidden]

Hi

Please listen to what everyone has put. Confide in your boyfriend, family and friends. I'm in pain 24/7 as I have many conditions causing me pain, I have an hour or less sleep per night due to pain. We are all here for you. Could you be referred to a different pain clinic? The first 2 I went to were rubbish, I'm with 2 now for different things who have been better. Pm me anytime of day or night but please get help, I don't pain management should have took you off all med instantly. You might need councilling but that's obviously up to you. Sending you lots of healing hugs 🤗🤗🤗🤗 xx

[Hidden in reply to Hidden]

Thank you. I have felt worse everyday from seeing the Dr last August at the pain clinic. His withdrawal plan for my meds have got me losing my sanity. I just don't where to go after Thursday when l have an 'emergency appointment ' with him. I wonder why he's made such am appointment for me. I will let you know and many thanks

[Hidden in reply to Hidden]

Hi

Write everything down before you go that you need to tell or ask him . Is there anyone who would go with you as an advocate? Maybe a friend? Love and hugs Lynne xxxx

[Hidden in reply to Hidden]

Thank you. I should have sorted this out a while ago. No meds have left me quite bitter- no sleep, not going out at all and l've got lymphoedema so can't do massage on my leg. Everywhere hurts. I'm going to write my notes and something has to change

[Hidden in reply to Hidden]

Yes, write it all down and if possible write the replies down too or record it. Take care Lynne

[strongmouse]

It may sound obvious but you can phone the Samaritans tel: 116 123 (free phone call UK). They are there seven days a week 24 hours a day and will listen to you. They have a website as well with lots of information and an on-line email contact too and in some areas they have a local branch.

You have been through an awful lot and you need help to work through it. It can seem like a dark place but you have inner strength as you have shown by all that you have already come through.

It sounds like you need a medical review as well. The problem with long term painkillers can be that their effect wears off after a while, but if you have been diagnosed with fibromyalgia then you need to talk to someone who knows about this condition. You can ask for a second opinion or for a referral.

It is hard but you have already reached out to people here so keep on and you will find there is light at the end of the dark tunnel you are. Maybe you can ask your boyfriend to help you find the support you need. No-one person can bear the burden alone which is why we need other people.

[Hidden in reply to strongmouse]

Yes, I totally agree. I wonder how some of these people would feel in our shoes for a day?!? Take care Lynne

[strongmouse in reply to Hidden]

It certainly helps to be able to talk to people who understand and care. Sometimes I've found it helps to have a number of people to 'off-load' to. Even those close to us find it difficult at times. All the best to you too.

[Hidden in reply to strongmouse]

Thank you. Take care xx

[Queeniz]

I know just how you feel believe me I am a shell of myself I don’t even know the person looking back at me in mirror it’s so bloody sad I’m losing the will to live, everyday is a fight with myself to stay alive and I’m doing it only for my cats

[Hidden in reply to Queeniz]

Please look at the advice being given above. Could you get an emergency appointment with your GP or phone Samaritans. Everyone ok n here are brilliant as you probably already know. Is there anyone you can offload to at home? Thinking of you. Take care Lynne

[Hidden in reply to Hidden]

I've managed to get an emergency appointment with a consultant on Thursday. He's the one that cut all my painkillers

then left me to cope without any support. I'm not going to accept the way he's treated me. I will let you know how l get on. I don't understand how you can just be left in pain. Many thanks for all your support. x

[Hidden in reply to Hidden]

I'm so pleased you've managed to get an emergency appointment, just tell him as it is . Take care Lynne

[Hidden in reply to Queeniz]

You have all helped much more than you know. I get angry and bitter but it's a waste of energy. Just make it pass one more day. If l can,then you can.l can only hope that seeing my fibromyalgia consultant thurs that there will be help. I can't deal with this way of living. It's being ground down every day but l'm going to tell him how he has made me feel.lve always kept diaries a d he can see 1st hand what he's done to another human being. Hug to you and let you know how l get on x

[RobbieT]

I've read every response & see empathy & caring in all of them. It's obvious that you would be missed in our little online community, so imagine how much your loved ones would miss you. I suffer fibromyalgia myself & can feel your every pain & frustration. Keep on at the doctor's. Take someone close to you with you for support. Take courage from all here who have responded to you. I do. Much love.

[Hidden in reply to RobbieT]

Thanks. I've been amazed at all your lovely responses. Thank you for letting me know l'm not alone. x

[Ipanoptic]

Freddie68,

I have lympodema, arthritis and I've had a stroke. I get alot of pain... Lots. I haven't had cancer, but the three things together pose their own problems.

I have regular life threatening infections (3-4). Now these infections are damaging my kidneys.

I've been at rock bottom, where you are. It doesn't matter how I got there, but I was there. You're definitely not alone. Take some strength from the fact that you reached out here and said how you really feel.

When you think you're ready, talk to someone. Anyone who will listen. That's a start, and a brave one. It'll be a long journey but you'll get there. I can't say I'm there yet or where you're going to end up, but when you get to a point where you can bear yourself and your demons you're already ahead.

I know it all sounds vague and cryptic, but trust your instincts and follow their lead. Humans cling to life harder than you think..

[Konagirl60]

Have you had your appointment? How did it go?

I pray you’ve been prescribed the meds you need to give you some relief.

I was where you were for nine years. My family aren’t local and unfortunately they didn’t support me emotionally. I had a pinched nerve causing severe pain. My family just thought I was depressed. They just didn’t care.

I had two friends stand by me but I lost most of the others. People generally don’t understand invisible injuries and disabilities they cause. If a doctor doesn’t believe you people think you must be nuts. Doctors ARE victimizing people.

I know what isolation is. I lost a career if 31 years, my job of 29 years and it’s been brutal. I’m lucky to be alive.

Don’t give up. All the advice is sound. Best wishes.

[Iluvgardening]

How are things going with you? I was thinking of you this morning and praying things are better😊