Any suggestions
Posted , 6 users are following.
I have recently been diagnosed with fm and am having problems getting my family to discuss it let alone understand it. All my family have passed away and they are the only people i have to talk to. my first support group isn't until september. I feel like I'm screaming inside and don't know what to do...any suggestions? Jo
0 likes, 16 replies
tiswas24537 josephine25095
Posted
because fm has so many symptoms other the pain and fatigue most people i find
think its all in the head, we know its not, but theres no getting it other to most people
iv had since 97 and my husband still dosent get it and neither do my grown up kids they just think its mum with the miserys . theres not much you can do. if your leg is hanging of people get it but these hidden disabilitys . are just that hidden.
just know your not making it up , be kind to yourself ,and try to ignore hurtful remarks , get a relaxtion cd and do twice a day to help keep calm because when your stressed the symptoms flare.
josephine25095 tiswas24537
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josephine25095 tiswas24537
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tiswas24537 josephine25095
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iv had many times where i just sob because people dont believe me, i think like others i try so hard to keep doing stuff even when it hurts or when i feel like iv got a hang over with out the pleasure,
the fatigue and brain fog are the worse for me,, when the fatigue is really bad i just cant do anything .except sleep.
its lonley as i have no friends and no other family close by ,so its just me and my aspergers son and my husband, i get more comfort from my dogs, i was on my knees crying the other day i got really bad stomach pains from constapation, and my little scruffy, just jumped on my back and liked my tears .
i am glad it wasnt the other dog would have knocked me out , its funny how dogs are more tuned in to your emotions then people. take care try and have a good day. tina
patricia17763 tiswas24537
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your story of your dog comforting you when you were sobbing really got to me, I have had a good cry myself just thinking of you, hope you are getting over it now. I just posted to you, but had to post again, it's our emotional stress that makes us feel worse.
my stress at the moment is through food, nit knowing what to eat its a b----dy nightmare.
You will laugh I rang up a nutritionist in Birmingham to enquire about help with my nutrition, and she said with my list of complaints it would be a long programme and she said her fees were not cheap so I imagine it would a thousand or so, told her to forget it but she did give me a few tips said not to drink tap water, take turmeric capsule and avoid all preservatives in food which is pretty difficult, and cooking from scratch is not always possible.
My GP has referred me to a dietitian but knowing the NHS god knows how long that will take.
Got to wash my hair tomorrow that always takes a lot of effort and holding my arms up is torture
Where do you get most pain, I get it in the back chest and shoulders the worse, usually put a hot pad on it but doing it in the hot weather just makes me sweat buckets.
Will go for now, keep your chin up.
Pat
patricia17763 tiswas24537
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Pat
tiswas24537 patricia17763
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i also found that the any of the those drinks with the supposed good stuff in them or even the tablet form , do the same.
yes holding my arms up or out kills me after just a few seconds
i used to hate washing my hair its a lot easier now we have a shower instead of a bath,only problem is i miss the long hot soaks in the winter.
my condition got a lot worse after my first fall in 2000 when i broke 3 ribs
the worst of my pain is between my shoulder blades neck and shoulders.
airyfairy85 josephine25095
Posted
that sounds very difficult. I am lucky to have a supportive partner who understands and tries to help. However, I'm not sure the rest of my family really get it, although they mean well.
I wonder could you contact someone from the support group and asked whether anyone there would be willing to meet up with you over the summer for a chat, as you are feeling alone and need someone to talk to? Don't know if that would work- just an idea! I'm sure there are other people close by who would be available to meet over the summer.
I found a good leaflet on fibromyalgia on the Arthritis Ireland page (I'm lrish), that you could try to persuade your family to read....it's called 'Living with Fibromyalgia' web link: http://www.arthritisireland.ie/assets/73/6873BE2A-9A66-3FBC-14F3E5532AC8F6E3_document/Fibromyalgia.pdf
Do your family help you at all? Maybe you could ask them to come along next time you are visiting the rheumatologist, and ask him/her to explain a little to them? Again - just a suggestion. Wish I could help you more.
Take care,
Marie :-)
josephine25095 airyfairy85
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patricia17763 josephine25095
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You do feel very alone, but see if your Doctor can refer you to any groups that deal with Fibro.
i take the UKFIBROMYALGIA magazine and there is a load of info in that I got a
Exercise down load, if you look on You Tube itgives Tai Chi for Fibromyalgia that is nice and gentle,
they say exercise is good but can give you hell if you overdo it.
Nutrition is also very important, though a nightmare if you get Ibs with Fibro as I have
Anyway enough for now,
Best Wishes
Pat
josephine25095 patricia17763
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Mrs_doodles josephine25095
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josephine25095 Mrs_doodles
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patricia17763 josephine25095
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also having a bad day today, been to the Doctors this morning no help whatsoever, because your blood tests are ok they seem to think you can get on with it
he said you are 78 and woman live on average to 78 I did not know to laugh or cry,
personally I think he does not have a clue, he did give me a spray for my nose as get
really congested, hope it helps.
Sorry to hear about your constipation are you taking anything for it, I take Movicol
does help me,
I have a friend but she is not very sympathic, they don't realise how painful it us, only see her now and then, my brother lives in Devon, only have a telephone call from him
about half a dozen times a year. My son lives in a village outside Melton Mowbray, so do not see home every often, he thinks all I need is to get out and about. My daughter in law is a Specialist Nurse in long term conditions, so you think she would understand more, she thinks I need another antidepressant, they want me back the way I was, so do I but it is not going to happen,so I wish they would just accept it.
Do you get any help with your son, you sound like your dogs keep you going, I think dogs are great companions, had two, could not manage one now.
This weather is really getting me down, it going to get cooler over the weekend thank goodness, I thank god when I can go to bed and take my sleeping tab and be out of it for a while, even relaxation tape has not helped today. I hate the weekends, always feel more anxious, which flares the fibro. That fibro fog is terrible have it all the time, stops me from being independant, and going out in the car because balance is bad, have to ask the husband to take me everywhere, hate it.
Well Tina I hope you have a decent weekend, did you say you live on the coast in Yorkshire?that must be nice it does keep it a bit cooler on the coast, where abouts do you live
it was 29c in the car today
bye for now,
Pat.
tiswas24537 patricia17763
Posted
i couldnt manage to walk my dogs at the moment so my son and husband do it. with out them i would have to hire a dog walker
i couldnt be with out a dog, the small one is my daughters who is supposed to be going back to her in augast but his been here for nearly 5months and his attached to us, and we are to him , so thats going to be stressful ,i want him to go back because its hard work with two, but iv fallen in love with him, and he loves the garden, and playing with my dog, so i am worried that his going to be lonley left in a flat all day while shes at work .
i am hopeing he wont settle so we can have him back ,i know that its sounds nasty , but i really dont like dogs in flats , especialy terriers.
my grandfathers family came from melton mowbury, i would love to live in tilton on the hill near melton , i have a big connection thru my family to melton my family were builders carpetners etc , and actuley built a house there. i grew up in leicester city, loved it so sad to see whats happened to it now. hope it cools down soon . chillow pads placed in the frezer are great , about £6.00