I have suffered for a few years now maybe not as long as some of you. I don't get much help from my Gp, I feel like I get dismissed before I have even opened my mouth they have never offered me any help. I suppose I have given up and just accepted my illness. Even though my Gp has said its not an illness. I have been suicidal and even overdosed several times but still get no help. The pain has been unbearable at times. But knowone seems to understand. My husband doesn't want to know any more. And freinds don't understand. I feel like its a myth not real like you can say I've got cancer and people react I know its not in that league but I'm sorry if I'm its a long term condition that we suffer from and should be recognised more. I'm sorry if I am going on but if anyone agrees or disagrees please just chat with me.
do people even care: I have suffered... - Fibromyalgia Acti...
do people even care
Hi people do care - you just have to meet the right people - I have lost a few friends along the way but now have good dependable friends - try not to concentrate on the chronic illness label - I tend to concentrate on getting myself as fit as possible - exercise (what I can manage) pace ,eat healthy and try to make time for myself - when I over think I feel worse - I am sure people care they just don't understand - maybe you should change doctor (I am) - hope you feel better soon - be kind to yourself - Do something you love
Neese.
Where have you got new friends? It is always hard to find someone and it is always easy to disappoint them, specially when you are young and need more care than their grandmother. Nobody wants to have ill friend and give a support((
Hi I am older (62) but I moved house 6 years ago (knew no one in the area) and went on a mission to make friends (I am a social animal) - within 3 months I joined a sports centre and go aqua aerobics two to three times a week - I then sat in the cafe with a book and coffee alone - then a lady from aqua sat with me then another then another - there are now 8 of us sitting in the cafe - we go for a Christmas meal and to a spa and the odd afternoon tea - also I have met about another 6 ladies I walk Finley with (the schnoodle) -. I also have 3 long term friends who I see now and then and talk to most weeks -, I am partly lucky but I do make a big effort to be social - I love being with people but since fibromyalgia - I do have my days I like to be on my own - I have always told myself - friends wont just appear on my doorstep I have to get out and find them. -. Some people say "I don't need friends " - but we aren't meant to be alone - I know it takes courage but the reward is worth it - it takes time but you can do it. - good luck. Neese
Hi activation, so sorry you are feeling so lost and alone but let me assure you that this community does understand what you are feeling. The pain, the exhaustion, the despair and the every day battle with this invisible illness is real, it is NOT a myth, but only those who suffer the same will know. It sounds like you need to find some one to guide you through the darkness you are feeling, have you tired to see if there are any support groups in your area? Also is it possible to find another GP who will listen, it can make all the difference when you are just listened too. I really hope you get the right help and support soon. Sending you hugs
Hi
I'm so sorry you feel so rotten. Everyone's brilliant on here. I'm lucky I've got a good support network and everyone on here. I think it would be wise to change your Dr. There are understanding people out there. You could show your hubby this site and let him read some of the posts. I'm in pain 24/7, it doesn't help having other conditions as well. Please take care of yourself. Love and hugs Lynne xxxx
You have to help yourself. You have done so by coming on this forum.
Why should people offer help? People often have enough problems of their own to contend with. They do not want to devote time and energy to someone else when they need someone to devote time and energy to them.
Vampires exist. These are people who drain you. I prefer to avoid them at all costs.
There is a very old saying "you can only change the world by changing yourself." When I first came across this I believed everyone else had to change. A few years of Buddhist practice I found I was in the position where people gave me useful help. I had to work not to put to much a drain on them and find ways of returning favours.
One of the things that is useful is saying thank you with your whole body and mind. It is draining when you are low on resources. However, it is a technique well worth developing because other people appreciate it. On the flip side I have met people who say thank you and it sounds like an insult.
Meditation and mindfulness is something useful to cultivate. It opens up a universe that you did not know existed before. Walking meditation can engage one in exercise as well.
youtube.com/watch?v=_IFvabl...
Very wise words Johnsmith, I am currently doing on online Mindfulness course, and I believe it was Gandhi that used the expression "you must be the change you want to see in the world" . Basically I think this is saying " if you change how you think, then you will change how you feel and what actions you take, and so the world around you will change! "
I dont think you have the correct doctor to help you.is there another you can see.
Hi to you we care for you and we know what your going through so please please no more o/d has one day it could happen
Go back to your doctor or is there a different doctor you could see if not soeak up for yourself and tell him you want to see someone else anytime you feel bad come on here there will always be someone to talk to
Hugs to you x
Good morning, We do care on here and completely understand how you feel. I have never found the doctors any help at all, and like you say they dismiss you before you have even sat down. I have had many of arguements with the doctors and specialists because they don't seem to care and some appear really quite heartless. At the pain Clinic I had to complain about the nurse and the receptionist and she got sent to compassionate training afterwards.
We are always here to help and support you,I have found alternative medications have been far better than anything any doctor could write out a presciption for.
Best wishes
Debs
After the conversation I’ve just had with a GP who’s never met me, I totally understand and agree with you. Fibro pain has gone to another level which I can’t control, had a headache for 10 days. Tried everything I have. GP said there’s nothing she can do and it’s not worth me rushing down to the surgery to be seen ( her exact words) Yet I took my dog to the vet with something wrong with her, diagnosed and 4 alternatives offered within 5 minutes.
Mention fibro to a dr and I’ve yet to find one that’s interested. Her medical opinion was to take 50% more otc cocodamol.
Dear Activation, I have little strength to write, but feel I must contact you dear. So very sorry how you are, and I fully understand some of your struggles. The pain seems unrelenting and unbearable, and there are always other issues ready to be added on that we have to deal with. No-one seems to want to know and you start to feel somewhat isolated. Why do not people believe you? Not even Drs. seem to see what distress you are in! I have been there so many times. All I can say is never, ever, think of ending it all. Because that is NOT the answer. God has given us life, and we are to live it. You will see some better days and look forward to those. The pain does ease, and give some relief. I have had over 33 years of being disabled and suffering long before that. My main problem is loss of voice, with such weak muscles, and was told by a specialist about 25 years ago that my muscles are just too weak to operate my vocal chords. I just have my daughter visiting now for a couple more days, but really have not been able to speak to her. It is very depressing, as if I strain, then I have difficulty breathing. So may I encourage you to battle on. It does not matter what other people think or say, because they are not in our shoes, though it is upsetting. Feel sorry for them that they cannot understand. I will be praying for you. Sending love from Roselil
Hmmmm. I hear you. You are not alone.
What I would say though is that it sounds like you have quite severe depressive episodes as part of Your fms and it may be useful for you to seriously consider getting some additional support to address it asap, especially as you've mentioned having suicidal thoughts.
Don't focus on how others are seeing you or treating you.
Change your expectations.
Look after Yourself and Focus on your own wellbeing.
When You start doing everything You can to care for Yourself in a mindful, selful and independent way, people around you will start to treat you differently. It worked for me. Give it a try. This forum is a real help.
Please seek help for your depression ok.
Best wishes going forward.
Gentle hugs.
Hello activation. I am so sorry that you find yourself in this awful place.
What struck me reading your mail was whether you can change GP. This might improve matters. At my surgery there are 6 GPs - 2 of whom certainly do believe in Fibro. 2 seem very sceptical about it, and I haven't seen the other 2 to ask. Just having someone who believes you makes a big difference, as I now know. You certainly deserve more than someone who is ignorant enough to say outright it is not an illness! What century is this person in??
You say you have overdosed in the past, which is so sad to hear. I don't know what support you received after these terrible times but it might be worth speaking to someone in your local mental health services. Just about how much you are struggling to cope with the Fibro given people's attitudes, etc. Here I can self-refer to the local counselling service and they can then refer on if they think that appropriate; I don't know if this is available where you are? It has certainly helped me hugely to be able to just sit and talk to someone for 20 minutes at a time about the weight of everything. In your case, if you have tried to take your life, then I would hope that good support would be made available to you.
If you are able to make some progress on the GP/mental health front then that might also help your husband. I can only imagine that he feels pretty hopeless about all of this, as things stand.
Please let us here know how you go. All good wishes to you.
Totally understand where you coming from I am in same boat and I have given up with them now and the less I have to see them the better sorry you had a rough time of it just try stay strong and positive no easier said than done do the things that make you happy and put a finger up to the world we live in a messed one and you got start looking after your self because nobody going to thankfully there sites like this where you think your haveing a bad time then you read someone's life and realise there plenty people got it worse or even the same and some times you learn how to deal with your own problems wish you the best of luck hope you never have them dark times again and hears to the future x
Just read another 1 of your reply and you want a new friends I be your friend and sure on hear your meet loads your not on your own hopefully it won't take you long and it all turn good for you life like a roller coasters up and down if you want to chat just send me a private message and I get back to you x
I fully understand how you feel. Had fibro? if that is what it is - over 35 years. Been bad for a long time. The last 2 years have been horrendous. Two daughters never ask how I am. I know they have their own lives and problems and they do visit, but it would be nice to think they care. One does help with occasional shopping, but it is mainly with hubby. Hubby diagnosed with dementia 2 years ago and fell and broke his foot last Xmas. I am having to do pretty much everything, although he will do little jobs if I ask, he gets defensive when i snap, which I do often, when I am not crying.For the last week I have been pretty much out of it, think I am dying, managed to get to see a doc, a miracle in itself and I have antibiotics for bladder infection. Feel so ill . My head is about to explode my abdomen is swollen and the right low sided pain is awful, and that is without all the usual 'stuff'.I feel abandoned as the few 'aquaintances' I have aren't interested. I no longer make any attempt to mention my health as their problems are always more important . I know I am feeling sorry for myself but hopefully when I get a reasonable day things will look brighter.
I really do understand how your feeling I have also felt suisdal and that know one understand but please try and keep your chin up because tomorrow could be a better day sending you loads of love
Just an add on from my earlier rant. Does anyone have peripheral neurophathy. Just been doing a bit of research and am wondering if what i am being treated for as a bladder infection could be interstitial neurophathy instead, with no infection involved.This would tie in with my other nerve pains. Also anyone any tips for relieving nerve pain. I have just about reached my tolerance limit. Take care all.
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