Stuck in a rut

[SallyE15]

My fibromyalgia is still on a downward spiral, my family situation is only getting worse. my mum now lives 20 miles away. I am having to live at my boyfriends part time as my father is in such a mood he's just a making my anxiety level to get worse. My doctor is not helping with my medication I am now on 20mg zomorph 2x a day and up to 60mg oramorph, paracetamol and naproxen. All of which is barely helpong. I sleep 1 to 2 hours a night always working in cold sweat after horrendous nightmares. I'm getting migraines last 4 to 7 days probably once a fortnight I cannot see light tower and I cannot move the pain in my hip my back my neck my legs and my chest pain it's always between 7 to 10 out of 10, the medication, physiotherapy and clinical psychology is doing nothing. I'm supposed to have them put on for Pregabalin but I have not. My parents are fighting out amongst themselves dragging me into it when I've asked them not to for my own health and sanity and then they get angry with me when I don't say that they're innocent party both of them they're both in the wrong and that both been wronged by the other. I don't know how the situation is going to end but I can't see myself going back on an even keel any time soon. My depression has got so much worse I've had to message the Samaritans so so bad I say unable to move the pain grandmother and aunt trying to help both been away but I want to get involved my depression has only got worse I've had to message the Samaritans i've be so bad I sat crying in bed unable to move for the pain. My grandmother and aunt have both been trying to help me, but both been away and dont want to get involved too much.

Sally x

[Weirdsewing]

I don't know if this will help you so I will share something my Grandmother used to say anyway - "When you are in despair and feel alone try to remember some where in the world other people are awake and are think and praying for people like you would need their support." It helps me when I am awake in the night in pain.

[metty]

I am so sorry Sally that you are going through all this on top of coping with your pain and the side effects, you really need to go and speak to your GP, they will hopefully get a balance re your meds and if they don't then go see another GP in the practice until someone listens to you....It is really bad when you get to the point of contacting the Samararitans and your doctor needs to know that you are that Low. I think you need to get either your grandmother or auntie involved as you need support and it sounds like your parents have their own issues to be dealing with. Support is very important so please reach out to one if not both of them and let them help (i know it is hard to let others see you like you are ) I am the same but you do have to. Please speak to someone but firstly get your meds sorted as they are making you feel worse. Best wishes and good luck Sally x

[SallyE15 in reply to metty]

Unfortunately my grandma and aunt don't want to get to involved situation of my parents. On Monday I am speaking to my GP practice manager to try and get to the bottom of moving forward and at least getting my medication reviewed. I feel so guilty my boyfriend is 100% behind me but he shouldn't have to be, we've only been going out a couple of months and he seen and heard a lot of craziness with my family and I'm surprised he's remained with me because it's stressed him out as well as me. I love him very much. He is wonderful! He's see my migraines at their worst and he's always terribly worried but he thinks that he can't help much. He doesn't understand that getting me a drink, or heating my wheatie bag is much appreciated Xx

[metty in reply to SallyE15]

My husband is just the same, we met 14 years ago when i was full of life, we had a wonderful time and we still have snippets of wonderful times when i have better days. I also after 9 years of this terrible affliction feel guilt to not only my husband but my mum and son and friends, I am lucky they all have stood by me. Please try not to push your boyfriend away, he obviously loves you as well and when you feel that for someone it doesn't matter what happens you pull together. Try and imagine if you were fit and he was poorly would you walk away?? bet you wouldn't. You need his support and love, on good days try and do something special for him. I am glad you are seeing your GP practice manager, make sure you are happy about things when you leave the meeting and you have sorted your meds out, sometimes the meds are trial and error, you have to swap about until you find something that may help although alot don't help. You need the support of your GP while you are going through this as he is your first port of call so find one who is at least sympathetic to your needs.Most Gp's don't understand what we go through and we need to educate them. If I get any new infor about the condition I always take a copy to my GP when I see him next so he can read up on it. Make sure you tell your Boyfriend you love him and let him know that the little things mean alot.......hopefully you will be together 14 years on. Good luck please let me know how the meeting went. Selfishly you must concentrate on yourself and the positive people around you, Stress just heightens the symptoms xxx

[Poppy-poppy]

Bless you in this awful situation with everything going on around plus your pain and depression I will be thinking of you and I hope that everything will settle down soon for you and yours, best wishes

[SallyE15 in reply to Poppy-poppy]

Thank you for your support, it all seems to be going off at same time x

[rosewine]

Sally - I was so sad to read your post.

Firstly, I am glad that you are at your boyfriend's and away from the home situation. I am going to be absolutely blunt here your parents are adults and just tell them when they ask you to take sides to act like they are. Their marital situation is theirs to contend with and they should not be dragging their ill daughter into the equation. If they are not prepared to go to Relate or similar organistation to try and sort out their problems they should just walk away from their situation and get on with their lives. They are using you as a pawn in a chess game and tell them you no longer want to play their game. Whilst you leet them manipulate you like this they will not address their problems so you have to walk away from their situation and concentrate on your own health.

Secondly, have the medics said why they have not yet tried you on Pregablin which I must say has helped me with the neuropathic, burning chest and back pain more than any other medication. Like others have said you need to see another GP and move your medication on as it is obvious from any of us reading your post that you are in tremendous pain and need help. I don't know whether you have been to a pain clinic as I wonder whether if they reviewed your meds and alternative treatments that would be of help.

Thirdly, it is obvious that your pain and parent situation has made you severely depressed and you need some kind of counselling or anti depressant to get you back on an even keel and hopefully to help you sleep. It is obvious that what is being offered you at the moment is not working and I think you have to make that clear to those that are supervising the mental side of your illness. Many here are on antidepressants not because they were depressed but because the pain has made it more or less impossible to sleep and often even a low dose of antidepressant helps with the pain as well as sleep. I dont know what antidepressants have been tried but as with any drug one size does not fit all and it is often a case of trial and error unfortunately. Many people were not depressed before they had fibro but they are afterwards as the pain is so lowering. I am thinking that if you could control the pain more and not feel so disabled by it that hopefully your overall mood would lift. I am so glad that you had the sense to contact The Samaritans when you were at your lowest and hopefully will continue to do so whenever you need to and also come on here and talk to us as it will give you a connection with others that are facing the same hurdles and will make you feel not so much alone. Do tell yoour grandma and aunt how ill you are and directly ask them if they could find it in their hearts to support you more or have you close friends who could do the same it does not have to be a family member and to be quite honest family are often too close to be dispassionate helpers.

Please take what I say in a feeling of compassion for you, keep in touch with us and let us know how you are getting on.x

[SallyE15 in reply to rosewine]

Believe me I've tried that with my parents I seem to be the grown-up and the situation I've told them I need to be out of this for my own health and sanity but they both just want to keep the situation stirring.

For some reason my GP believes that Sertraline then went to the my anti depressant will sort my pain. I am tired of trying to explain that it isnt assisting and pains only increased but every time I've asked them for assistance I don't seem to be getting anywhere. I am changing GP but is taking a while because I'm so complex. Hospital doctors don't understand why theres such a delay with putting me on pregabalin and I don't know what my GP is concerned about as getting my pain under control now should be the priority. I have suffered depression before fibromyalgia but it is 1 million times worse now. I am in to counselling and clinical psychology at the moment with the pain so bad it's difficult to see that it's having that much effect as of yet. If i could only sleep better i think my overall outlook would be easier. My gp wont put me on a couple of days sleeping pills incase i get addicted but has me on 60mg of morphine miniumum a day. Its all very confusing.

My parents won't go to relate or counselling or anything above just want to make each other miserable and blame everyone else around them. Its very hurtful but i am sticking to my ground and remaining as out of the way as possible. Thanks for the advice

Xx

[Eggcustard]

So sorry you are feeling like this, it's horrible getting to this point. Pain can really drag you down and make things desperate at times. I hope you are feeling a bit better today, please let us know who you are. You are not alone, lying in bed today I wondered to myself how many women are also lying there feeling the same as me, in this much pain and exhausted! Please try your GP again and maybe try a support group, they can really help xx

[SallyE15 in reply to Eggcustard]

The past year I've been going around and around in the cycle the pain gets worse the doctors ignore me, put me on more random medication to stop me chasing them for a bit but they don't really review situation and howit can make me feel better/brighter in the long one. I've had to do all the chasing myself hospital but I don't have the energy to seems to be never-ending. All i want to do is

Get to a situation where i can come off the opipd medications as much as possible. Xx

[TheAuthor]

I am so genuinely sorry to read that the problems are ongoing and I genuinely want to wish you all the best. Please take care of yourself x

[SallyE15 in reply to TheAuthor]

Thank you and all the best to you too x

[SallyE15]

Had a more positive day in that i went out with my boyfriend to see a band in manchester. Absolutely on my knees and still cant sleep. He's terribly worried for me as i am getting 1-1.5 hrs a night. My pain is horrendous in my chest from coughing on top of the normal pain. My parents will not stop ringing me. I've ignores the calls to only get vile snarling messages demanding i answer. My father wishes i become his house servant now mums left, purely due to his laziness, he cannot be bother listening how to switch the washer on. My boyfriend looks on incrediously when he hears my dads comments on it all over the phone. He use to 'believe' i was making up the pain and to be honest i think its never changed. I am applying via the council for housing, i cannot live like this. Its making my ibs aggrevated nevermind the fibro, fibro fog......

Xx

[rosewine in reply to SallyE15]

Glad you had the opportunity to go out even though you have suffered for it. I bet you wish that we were back in the era of normal telephone calls without text and answering machines.x

[TheAuthor in reply to SallyE15]

Please take care of yourself and good luck with getting somewhere from the council. There are also housing associations that may be able to help you? I hope that you enjoyed your outing but I am so sorry to read that it has made you feel ill x x

[Hidden]

hi Sally is there anything i can do to help you at this moment i would be happy to do as much has i can if it would help you out take care look forward to reply Alan x