I was told I had fibromyalgia just over a year ago., handed a booklet on Fibromyalgia and recommended to join a support group on patientsonline. I was offered a place in a Pain Management clinic. Since then I have watched my work being eroded away ( I was a ballet dancer/teacher),my brain become foggier and foggier. I have lost my fitness and just feel like giving up. The neurologist I was sent to see became rude and dismissive the moment he found out I was being treated for depression and now I have a new GP that I am frightened to go and see in case she is someone else who thinks that Fibro is a 'dustbin diagnosis.' I am having enormous trouble accepting that I have FMS and that it won't go away. There are other health issues going on but they all seem to get lumped in with the fibromyalgia.
Pain management were good but once the sessions were finished I have felt like I am really adrift and there is no more support there. I have had to stop work because my body was in a permanent flare-up from being constantly pushed. I am constantly stressed but can't seem to break free of it.
Mum died in January and I am looking after my 90 year old dad who is a sweetie but it just adds to the stress. I don't tell my OH howI feel because I don't want to moan but then he assumes I'm fine.How does one cope?
Sorry for the whinging.
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jillylin
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9 Replies
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You have had fibro for a year that's not long and its natural you are still feeling shell shocked and depressed at what you have lost which is basically life as you knew it..... Unfortunately you do find experts who are anything but when it comes to treating us as human beings...
The first thing to do is make an appointment to see your new GP and find out what their thoughts are on fibro ... I am registered with a practice of 6 drs and all of them believe in fibro .. If your new GP doesn't then change and find one that does. I know it seems daunting but you can do it and you may find your your new GP is very fibro friendly and can help.. Also as you have depression a common thing when being diagnosed with fibro get your meds checked my 4 th anti depressant I tried suits me perfectly its trial and error as to what suits each fibro mite but when you get the combination right your quality of life will improve... Secondly your OH must have noticed the change in you , you have had to give up work... But he may be scared of saying anything to you to upset you... Don't assume he thinks everything is fine and he may be very happy if you open up to him and tell him how you feel... Show him the post you have written ....... It says such a lot..
As for coping its a mixture of meds, grieving and then acceptance that your life is changed but you are still you inside its just your body that is not working as it used to.. It won't happen all at once , but with meds and support ... Hopefully from family but certainly from us on here you will start to feel better.. It may be slow you may have setbacks but you will wake up one day and think . Life is different but its ok .... And you can start to enjoy things .. Maybe different things but it will happen.
thanks for your reply. I guess I'll have to be brave and visit the GP. My last one was lovely but after my experiences with another GP at the practice and the Neurologist, I am increasingly anxious about it all.
Thank you for the link, I shall be doing a lot of reading
Feel free to have a good moan, we all do it, and we all know how you feel!
Please do go and visit your GP - why on earth should you be afraid of her?
I'm an old bore, because I keep saying this, but remember that your GP draws a very good salary for looking after you, and she's not earning it if you don't go and see her!
I find that female GPs, on the whole, are a bit more sympathetic, so you can be hopeful, but if she doesn't come up with the goods, then complain. You have a right to competent and sympathetic treatment.
My colleague VG, our star volunteer, advises that you should take a written list of your main problems along with you when you visit your doc, Use a separate column for complaints which you think are unrelated to fibro. and take a friend for moral support if that helps.
If you can be concise about your symptoms it saves time, and earns attention.
Ask to be referred to another specialist, preferably one who has an interest in,and a knowledge of fibro, and please consider making an official complaint about the rude neurologist - no matter if he has no interest in fibro, he has no right to be rude or dismissive!
Where your OH is concerned, I understand that you don't want to be seen as a moaner - I'm the same myself, and don't moan very much to my family.
On the other hand I do tell them that I'm ill, briefly describe my symptoms, and tell them what help I need.
If you ask for practical help people are usually only too pleased to oblige. On the other hand, if they meet with a litany of complaints every time they see you, you will be dismissed as a whinger - sad but true!
Ask charmingly for help, be liberal with thanks, and mostly, you'll have them eating out of your hand.
How kind you are to look after your elderly dad! Has he claimed attendance allowance and other benefits? That would pay for a bit of help in the home to give you a break.
I do understand how depressed you must feel at the change in your lifestyle - but if you can get yourself sorted out medically, then like the rest of us, you will be able to plan a better life. It might be different, but it can still be good!
Take care and keep us up to date with your progress!
I tend to be afraid of doctors generally so the thought of having to get to know a new one all over again is daunting. Silly, I know :-(. I guess I shall have to be brave.
OH is a very sweet man and was very supportive of me having to stop work but there his interest ends. He thinks I should be better now so I avoid talking about it to him. Maybe that is a mistake but unless he is the one with health problems , he isn't interested.
Life seems just one big old mess at times, doesn't it.
you are having a tough time at moment and it is only since january your mum passed away and you have that to deal with along your 90yr old dad which is a very grand age and you are having to be strong and cope with all that and trying to keep busy!
When you have depression and fibro yes some will try their best to say its the depression thats causing it or the stress , but why would we go on about it , it shows for the amount of ppl in the group here that it is an illness and maybe you do not have to accept as such as i do not accept i was diagnosed a year ago along with other things it takes some sinking in and sometimes we can also close our selves off too.
it is not a dustbin case or you would not be here seeing real ppl understanding what it is like for starters.
you had such alovely job have you any other things as being a balley instructor/dancer usually get hypermobility for being so flexible..why i say this is because i have BHMS/eds and it affects your mobility along with the pain and suffering from fm also if you have become to a stage to give up and your weaker with muscles and strengths, (like me)
not all of us are the same however and we can be flexible without having what i have.
i was exteremly flexible and wasted talent i guess really .
Anyway as for the Dr you must change or ask to be refered as your not happy, as you do not want to be any lower than you are already. every Dr is different!
Good posts above too on help and this is what the site is so much about helping each other and we do not think anyone moans .. we are what we are for reasons, we were not originally this way.
it is so tough to deal with as it is 'chronic' and can be so debilitating.
it takes so much time to get to a stage where you can deal with it and cope you dont have to accept it .
but accepting it helps you cope better i guess.
think am getting lost for words for once here ohps another issue..
listen my lovley you can talk to any of us it is so so friendly and welcoming and if you want a more private chat then inbox any of us we do not mind listening and trying our best to support you in what way we can.
your OH like VG said surely he must see some changes? i think it be a nice idea to sit as cosy as you can one night or day and try have a chat about it all..
because will then let him decide how he can best help you , like mine tends to do a lot now round the house for me as much as i look very healthy apart from putting on 2 stone and looking puffy lol
yes, I am very flexible and am hyper mobile. I scored 9 on the test they do for that which I gather is extreme flexibility.
Yes, OH does see some changes but , though he is very sweet in many ways, dismisses other peoples health problems. If you have a black cat, his is blacker .Even my old GP commented that he only sees what he wants to see. I suppose I can try talking to him again but last time I tried to tell him about the depression , his response was " well, you must be better now, you've got pills for it". Sigh!
Hi -- I am sure the pain management course probably explained about "pacing" and "managing" your symptoms -- now this is the point where you need to become an "expert" patient and learn to put into practice what you have learnt. I was diagnosed 7 years ago and for the first 2 years I really struggled - could hardly get out of bed -- then I finally learnt how to pace myself by "listening" to my body -- I found paintoolkit.org was useful -- the print off booklet is good.I am now back at work part time (12 hours) ,doing gentle exercise (yoga, swimming, walking).
I got my husband to read the Spoon Theory (butyoudontlooksick.com) and although he is still not very sympathetic he understands a bit better..
As for a new doctor, I would suggest that on your first visit you take a friend or family member along with you for support and make a written list of what you want to discuss with them to take with you. If he/she knows very little about fibromyalgia then on your second visit print off some information about it to take with you --- my doctor knew little but each time I went to see her I took New information with me and we learnt about it together.
You will also have to learn to "say no" when others expect too much of you -- this was one of the things I found hardest because I was used to being able to do everything!! Also don't be afraid to ask for help when you need it.
Finally remember you can ask us all questions -- be strong and good luck in becoming an expert patient. Hope this helps. Xx
PS forgot to mention "acceptance" -- another thing I found hard -- but you have to accept you can no longer do as many things as you used to do -- but learn to be grateful for what you can do xx
thanks for your reply and also the link. I read the spoon Theory for myself but never thought of showing OH. Time to get the printer going.
Saying "no" is something I struggle with. I always feel guilty if I don't do what I am asked to do, definitely and area I need to work on. That and stress control.
Yes, pacing was explained on the course and also to use a timer to pace. Unfortunately when my timer goes off , I go straight to it , set it again, then carry on the same task :-(.
Acceptance is really hard but all of you here do seem to understand. All these years I have worked through pain to make my body obey what it has had to do to dance and now I can't do anything. I look at others in my profession and they are fine, no problems, the occasional injury but otherwise they are still dancing. I have a bit of the "why?" going on. I don't understand how this happened to me
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I feel like I have failed 
Paingone
Fibromyalgia
Lost trust in NHS, lost my job because of it all! 
Lost it!
