I need someone to talk to :( - Fibromyalgia Acti...

Fibromyalgia Action UK
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I need someone to talk to :(

Dolly84
Dolly84

Im giving up! Feel like my diagnosis is going nowhere, no treatment, no help and constant pain. To top it off my partner doesn't really understand and I feel like I'm completely lost! Don't know what to do anymore. If I didn't have two beautiful kids I wouldn't be here

22 Replies
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Hi doily84 I'm new on here. Sorry to hear your not doing good everyone on here seems to be so supportive I really hope someone with more advised can help you. It has taken over 3 years in total for the doctors to finally tell me I have fibro. I have had some gyne problems and after changing my doctor for a gyne doctor he finally got to the bottom of what's going. I've been sent for scan after scan bloods then more bloods and nothing I had endometriosis last September on my cervix which was removed had keyhole done which wasn't nice since then my fibro has taken it's till on me have some really. Bad days but I also have 4 children and one of them is only 3 so I feel I have to keep going for her and myself I'm quite a strong minded women and don't let anything get in the way if my life but recently I'm struggling and this is why i had to change the doctor and nurse I see every week. As all doctors see different thing I've had more support from my nurse than my doctor but they got there in the end. So please keep going for yourself and your children my partners not the best at understand what I'm going through but I've been of work now since last September so money has a lot to do with it in our relationship. Now I'm going down hill he seems to have stepped up to the mark if only they where made the same as us they would understand please don't think your on your own as there are so many amazing people on this site stay strong. Dods79x

hello Dolly. I am not sure exactly what to say to you, but i am in alot of pain now or maybe will soon be. I am so very confused and lost in my life. I try to make friends and it seems i just make enemies. I am here to talk

Hi Doly84

I am so sorry to read that you are suffering so much at the moment, both physically and emotionally. I was wondering if you have given any Fibro material for your partner to read? It could be that he simply does not understand the true gravity of Fibro?

I have pasted you the link to our mother site, FibroAction, maybe you could let him read the symptoms and / or treatments pages:

fibroaction.org

I have found in my life that many folk simply do not understand what is happening to their loved one's and do not see things as a problem. There is also the other side of this whereby some people simply do not have the same empathy toward others that we do. There could be many reasons why he is not understanding what it is like for you?

Another idea could be to take him with you to your next medical appointment? I know what you are going to say, diagnosis is going nowhere, no treatment, no help and constant pain? However, human nature is quite bizarre in its attitudes. What I mean by that, is any person who loves you will naturally stick up for and take your side if you start having a difficult time with your GP? Once he begins to come on side, by all rights, a snowball should develop and hopefully he will be much more supportive and understanding? I know that sounds like manipulation, but if it works, well?

All my hopes and dreams for you

Ken x

Morning Dolly,

I understand how you feel completely, it is so very difficult

to get used to the way our lives have changed.

We start off with such optimism that the next doctor the

next test will actually tell them how to help us. We get knocked back regularly

untill we find our selves at home in pain taking tablets for this that and the other!

There is one thing and it helps enormously - it is being on this site - you realize you are not alone!

Lovely people who really understand what is happening to you are here waiting to chat, to chew the fat, to ponder over prescriptions, to shout at if you need to rant. To , I know laugh with when your funny bone needs tickling. You will find we are here just about ALL the time so never feel alone. we do love a chat and a giggle the last it is compulsory :) I do love the smiley emotion faces do you :D

So at he moment you are rather low, I know from your post it feels pretty grim so take your self to your window what can you see? It is a new day (ok it is corny ) but lets have a chat join me for a coffee and let me hear how you feel e can help because we can just knowing someone cares helps doesn't it Well I am here I am a bit bonkers but quite fun with it! I am the very large lady over there who is in that horrid wheel chair as you can see I have a bright reed sundress on ,strange wraps on my legs and my posh gardening hat on my head. I grin rather like the cheshire cat would you like sugar in your tea.?

xxgins

Ide love coffee too. I'm not sleeping well and I'm one of those people that needs my sleep, plus by 12pm I also need another rest. I've not been. At work as my shoulder and wrist are so bad and I feel very isolated. My partner has read everything but is just getting frustrated with me being so down an in pain all the time. I keep thinking it's all in my head but it's not. I've put on 3 stone and I'm only 5ft and feel disgusting as I'm the heaviest I've ever been! This morning my shoulder is so bad I can hardly move my arm and I feel like I've been hit by a bus :( just want some painkillers that work. I'm still awaiting on diagnosis either fibro or ra...or both!

clare_hart
clare_hart in reply to Dolly84

What is the possiblity of getting medical leave or applying for unemployment? (I don't know what your government offers). Here in the US, we are not getting extensions even if our benefits should have gone on past the end of December 2013. I have that problem, as I was supposed to receive 5 weeks more. Finding a job when you have fibro, are my age, can no longer do the jobs you have experience in, and are competing in an economy such as this, make it impossible, for me at least to find work.

But if your doctor is on your side, you should be able to get extended medical support, maybe even workmen's comp (if that is available) for you to survive. If you have adequate financial resources, I think it is necessary that you stop working and concentrate on dealing with the pain, the fatigue, and the anxiety, at the very least.

I could not make it through the day if I were still holding down a job. I must say my efforts to find one have become really lackluster (after trying for over a year to get something I would even be considered able to perform. I had all of one interview in person in all this time)

Don't beat yourself up.You must make your own decisions as to what is right for you, what you can handle, and what causes your symptoms to flare. RIght now you are having constant flareups and this leads to a state of frustration, depression, loss of self-esteem, maybe even despari.

I totally agree with Ken and others that we have to educate our family and friends. I brought my fiance to one doctor's visit and wil do so again since I think he is still a bit skeptical. I have been more vocal about my difficulties and keeping them on the burner so he doesn't get complacent about what he believes I can handle.

I wish you the best,a nd sorry if it seems like I am preaching. I am just trying to share my experiences and hope this brings you some insight on yours.

Good morning Dolly,

I hope you're feeling a bit better today, I totally empathise with you, I feel like i'm in a constant battle with not only the medial profession but the whole world at times. I'm a single mum so don't really have anyone to offload to, except my daughter, who herself suffers from chronic back pain and obviously as her mum her needs take priority over mine. I do think sometimes how things would be different if I didn't have my kids (son 17, daughter 18)!! but try not to dwell on it. I know how hard it is to keep fighting just to be believed but you do have to draw the strength from somewhere and keep on fighting, you'll get there eventually!! i've asked my kids to go on website and inform themselves of my condition so they have a better understanding, maybe your partner could do the same. Anyway you've got 2 beautiful kids so you know that you've got it in you.

take care and please know that here you don't need to convince anyone. Kmc xx

Have you got a fibro group in your area? We have a brilliant group in North Somerset, really supportive and it is really wonderful to be with other people who just understand and somehow it makes the symptoms seem less problematical. We have a regular meeting with speakers (once a month) a craft group (once a month), we have asked the library to stock books for us that anyone can loan, and sub-groups for coffee mornings with a few members, we organise spa trips at discount rates and subsidise people who can't afford it, we have some money raising events selling our craft things, plus lots of people form close friendships with the people they meet up with. So it really is an amazing way of finding your way forward with this horrible disease.

I live in preston Lancashire so I don't know x

Hidden
Hidden in reply to Dolly84

Hello Dolly. I have just had a quick look and found that there are four fibro groups in Lancashire.

If you click on the yellow butterfly at the top of the page and then on the web site. You will find the support group directory on the left hand side of the page. I hope this helps and that there is one near to you. Gentle hugs sue xx

Hidden
Hidden in reply to Hidden

just had another look and there is one in Preston. If you need any help. just ask. :)

Dolly84
Dolly84 in reply to Hidden

Does it say where?

Dolly84
Dolly84 in reply to Hidden

Can't see where to look for groups...I'm on my phone

Hidden
Hidden in reply to Dolly84

They are taking a break at the moment due to the passing of their leader.

info@chorleyfibrosupport.org.uk

If you leave a message they will contact you when they are up and running again.

There is also a group that meet at Clayton Brook who can be contacted at the same E mail address.

Hope this helps sue

Sweetheart, I feel your pain!!! First are you taking any anti-depressants? They really do help,as this disease is overwhelmingly depressing. Next go to a pain clinic. It saved me, I was at my wits end. Now life is at least bearable. Hoping this helps you. xxxx Mitzi

I don't know what to do to go to a pain clinic when I haven't had a full diagnosis!?!

clare_hart
clare_hart in reply to Dolly84

I insisted my GP refer me to a pain clinic. It was this doctor who confirmed my diagnosis and that was only a few months ago. My GP, though he basically agreed with me, felt that he was not qualified to write it down as an official diagnosis. So get yourself to a pain magmt doctor or a rheumatologist, or whatever kind of specialist who can deal with your pirmary symptoms. As others have said on this forum, research the available docs who have the most experience with and empathy for fibro sufferers.

fenbadger
fenbadger in reply to Dolly84

Sorry this is a long time coming. Why not go to a pain clinic if you're in pain? There's a whole raft of pain with no discernible cause.

I'm also wondering how you feel otherwise now?

I have seen a rhumy and it's just ridiculous...my next appoint is sept, so what am I spose to do till then? I'm seeing gp tomorrow but not sure what to say to get him to give me proper treatment and or painkillers that actually work

tell your gp your concerns & exactly how you are feeling hopefully he will be able to help you but you have to keep on at them.

take care

lilian x

Dear Dolly only me again lol !

I really feel for you it's so hard when you don't have a definitive diagnosis

I remember being at your stage just I really had to be in agony before I took pain killers , which is actually worst you can do when in acute pain. If you wait for the pain to be at it worst the painkiller struggles to keep on top of the pain. If it was me going to the GP I would tell him everything and don't try to be strong ,don't be brave if you want to cry CRY!! Please dolly the GP needs to give you a regular pain killer so you can keep on top of the pain to make it bearable. The thought of antidepressant was shocking but side effect of some are pain relief and if taken at night help you sleep so you feel better have less pain and can sleep better. I don't feel that we can expect to be pain free but the pain must be bearable . I know GP don't like being told what to do you have to make them think it's there idea but any good GP will get you pain manageable to a level you can cope with. If you have you consultant rheumatologist name I would also and have rang there secretary and explained how bad things are and they use to help. The GP can write to consultant to speed things up if he feels it's needed or can be bothered. I also said before and done this many times prior to diagnosis is gone to A&E when in agony and said can't cope at home in this pain mostly it was a waste but on one occasion I had an excellent consultant who just happened to be on call and I found myself in theatre having an operation 3 days later which we all thought would cure me but sadly did nt however it was luck really that I had a proactive surgeon. I hope it all makes sense I don't feel I can or have any right to tell you what to do but just feel for you so much that I want to tell you some of the things I tried. I hope you don't feel I'm telling you what to do cause it's not my intention just want you to have options. I feel so angry that your suffering so much when I know the GP , hospital, consultant can help you . Good luck will be thinking of you and I know so will all the other lovely caring people on this site . What would we do without it ?.. Night Dolly and all you other night owls xx

awwwwwwwwwwwwwwwww dolly feel for u i live on my own have 1 son who didnt understand fibro and said it was all in my head but over lat years hes been more understanding of me being ill and i think hes realised it not in my head at all were do u live have u know friends family to talk to xx everyone on here friendly and helpfull xx

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