OK OK I have said in my comments how positive I am and today its being tested , I have just got worse throughout the day I had a seizure early this afternoon and the pain has just got worse. I have to stay strong for my husband and kids but inside I am crying right now . I am completely fecked off with it. I confess I am due on and the pain all over seems to be stronger. I am 42 and I am sitting in a chair propped up by cusions a blanket and a hot water bottle for my arms watching emerdale , tried knitting a bloody scarf but my hands/ arms hurt. Rant rant rant !!!!!. wow glad to get that off my chest. sorry everyone but sometimes eh !!.
Know the feeling hazel I feel exactly the same I get so angry with myself that I can't do what I want to even texting is sore tonight so this has taken me ages to write.
My arms are always worst so that limits so much and my problem is when I am having a good day I over do it but if ime sore and do nothing I just get sore so there's no balance or not that I have found anyway
I hate saying ime sore to people as I feel that's all that I say now but tonight my whole body aches and I know I am not going to sleep due to the pain I am in
Thank you for taking the time to reply I appreciate it. I am just feeling sorry for myself tonight. I know what you mean I feel like I am falling on deaf ears sometimes ,so I have decided not to say unless asked. Know one gets it any way unless you are suffering yourself. I have just ordered magneisum flakes and oil recommended by a member give anything a whirl. Right I am off to bed take my amatriptalene and hope for a pain free sleep. I hope for you that you get a good nights sleep. Another day tommorow , I will give myself a kick up the bum and stop wollowing ha ha .
i get so angry to i hate depending on anyone to do stuff for me and i hate feeling so useless. my body hurts so much
, i had to sew a zip in a coat because the poppers were rubbish it took 3 hrs and the pain in my arm and shoulder lasted for 5days .
so sewing , baking, writting, and other hobbies i used to enjoy now all come at a price .and the price is PAIN .
i am no others have the same problem its so soul destroying and i get so cross and angry . i love covering up with my fleece throw. it soothes the pain in my arms by warming them up gently wish i could get some fleece arm and leg warmers
. my wrist has also locked today i need to crack it like my fingers but it hurts to much
hope we all have a better day tomorrow
Hi Tiswas,know what you mean...If you can sew, buy some fleece online and have a go at making some leg and arm warmers. Must be quite simple to do its just a strip of fabric, sew some velcro on so they can hold on your'e leg/arm. Putting elastic in would agrivate because of the pressure I should think. I am going to have a go myself...I used to do lots of sewing and knitting at on time..Now I can't even knit half a row..I feel so useless Never mind..Have a good day if you can, Anne
Morning , I saw in Dunelm mill a teddy bear onesi It is really soft , Do you know its good to let what you really feel out. I had an awful sleep kept waking up to get comfortable then when I did I needed a wee. still in pain today. It must be frustrating for you to suffer to do the things you enjoy. Plus I to have to rely on my husband to drive places and nothing pees me off more the control he has when I want to look in other shops just to feel normal, being out of the house he will say " No need to get home incase you have a seizure or he has jobs to do" . I miss driving myself places , I had to stop because of seizures ( and rightly so) but to be honest my arms and legs hurt anyway.But today is another day . here is to a good day for all of us
.
Hello Hazel, I know exactly how you feel..I hate my husband driving me around too, I so wish I could get my independance back but I know there is no chance of that.. I am having yet another bad day today, its seems to take till at least 1pm for me to start getting a little more mobile. Then by 4.30ish, the pains are kikking back in..Have a better day if you can...Regards Anne..
Morning Anne , Woke in pain but I thought today is my day, I have just had a wash and am now back in pjs , I was thinking of trying to walk to the shops , but after I had got dressed the pain in my legs back and arms are giving me that burning throbbing pain even worse than this morning. I get that to by about 2.30 I start to potter around but by 6pm I am crying inside. I crave to get back to normal. sending you a hug . And you to try to have a better day.
sorry to hear you have seizures is that thru the fibro .iv never heard of that must be one of the rarer symptoms.
i had accupunture on tuesday i told her i wasnt sleeping having lots of dreams in a night, and could feel my body pain so couldnt rest
she did some points and iv had 2nights of good sleep .
i wish i could unlock my wrist it really hurts ,i v found any where iv got an old injury or wound the pain is worse have you found that .
its the same with my husband dosent like going into town with me [scarborough] because i have to hold on to him because i never know when my left knee will give way ,
i can manage with a stick but that makes me feel old . i am 54 but i am not if you know what i mean
i am still little crazy still love life and fashion and music /art/ and love to walk ,its like i have a massive ball of energy inside that i cant do anything with ,i am not ready to hang up my boots and slid into old age
to be honest i never will be ,
even if i make 80 i will still be wearing funky clothes and boots .they day i slip into a cardi and a granny skirt i going to be put down . please god save me from that .
i feel really sad somedays as we all suffer so much and loose so much and yet people think we are faking it ,and trying to get benifit is a nightmare . i am really worried about not getting mine again when it runs out in june.its going to make me even more dependant on my husband
for my ltd pain relief and to get my hair done i cant live with grey hair
.
. i wont be able to have my accupunture either so i am really scared i will end up not only more house bound but in more pain and grey as well,
my self estem is already on the floor . i am a firecely indepandent aand
its not fair this bloody conditon takes so much from us then we have to fight for what little we have to help us .have some independence sorry iv been on a bit of a downer ,will give you lots of smiles to say thanks for listening to my rant
i hope that your having a good day ,
i think we feel worse because we feel so powerless
our dissabillity is hidden dosent get much descusion in the media and new to the world so to speak
and we feel that very few people even try to understand what we are going thru, you know the only place that dosent hurt on me is my fore head . but when i try to explain. people just roll there eyes and it makes me so angry.
but i suppose we will have to try and smile for our own sakes
Hey rant as much as you feel like I will be here. Right on sister you hold on to who you are. I have had seizures for years since about 30ish on and off and since 22 dec I have had them practicaly daily this is why I am off work at the min. I have always had this pain though. It wasnt until I was admitted to hospital recently that I found out about two symptoms I have, Nurses were saying " do you want your pain relief for your fibromyalgia or silent migraines" I was like what!!!!!. Then a nurologist came to see me and talked about how I was coping with the condition plus mainly to talk about seizures. I said that my Doctor has never told me this is what I had but treated me for pain. But i am happy now as I know what I am dealing with. Told my doctor what I had found out and he didnt really comment just put me on extra pain relief amatriptalene. As for seizures they think its Non epileptic seizures but I am waiting to be reffered to a different nurologist now. waiting game. I to am fun loving , love to be around people. I was wondering about sticks ect does anyone else use them???. I feel like I could use a stick but have been putting it off. Does it help you?. I shouldnt worry about your benefit you have doctors backing and evidence. do you know any mobile hairdressers? , cant have you having grey hair darling . Your right its not bloody fair , its like you are fighting your own body well i am up for a good fight!!!!!. send you a hug , and have a good day . love the faces
HI , smiling right now my flakes and oil are coming tommorow. I hope to get some kind of relief. Its the little things in life
its a thought maybe i will cheat and look for a fleece jumper and ill cut the arms out , not sure about the legs , i am a bit vain maybe someone will think of it and it will become a fashion statement for next winter .
So sorry you are feeling so ill just now, Hazel - what gets me is the way that I can be feeling poorly for weeks - even months - sometimes, and within a few days, I am 100% better ( usually Summertime ). I've just started on supplements - D3, and Magnesium and Calcium, and I am feeling better than I have for years. I'm hoping it's not just a coincidence........
no mobile hair dressers in this area , its the money that will be the problem i f they stop my benifit, its £40 for my hair once every couple of months / my fortnightly accupunture is £40 my pain relief stuff magneisum oil and flakes and oils add up to a prettty penny. each month
so no benifit none these so il shrivel up and have to stay in .
i rarely go to the doctors so theres not much they can say , on my behalf
so i am stuffed . yes i use i stick if i have to go out on my own it gives me that bit of extra support if my leg gives way .the last time i did i broke my nose and hand
i am just angry that everything is such a struggle and the new benifit system is intent on making it even harder.
i hope you get some good days soon..hun
The Benefits system is all wrong now - I have a friend who suffers terribly with RA and Osteo, and they stopped her benefits. The only job she could get , as she had no choice but to work, was as a cleaner, and every single day is an absolute HELL for her. So I can understand your frustration Tiswas, and anyone else who is ill and has to rely on benefits.
i no hun thats why i am so scared i am lucky compared to some i realise that ,as i have a wage earner ,but loosing my bennift means i loose my independece .
id like to know what job i could do ,i cant sit for more then 20mins stand for more than 20mins , i cant be near anyone wearing certain perfumes including soap/and fabric softners, cant be near anyone who smokes
can t be anywhere to hot or to cold Aand i never know when my leg will give out. ANY IDEAS . a cancan dancer maybe
Hello wendy,Thank you for your reply, I always feel less pain in the hot weather, one doctor sugested I move abroad, like I can do that. I have got some magnesium flakes & oil coming tommorow cant wait to try . Thats great to here somthing is helping somebody.
my best time is hot weather as long as its not humid.
humid and hot humid and cold kills me.
best place for me would be madrid hot and dry .if only