new to fybro
Posted , 9 users are following.
Hi, I am 41 and have two children, and I have just been diagnosed with Fybro but when I think about it, I started years ago. I have suffered for years with painful periods (being treated for early change with HRT, which supprisingly did not work), and tiredness becoming worse in 2005 when I also started with IBS and I had to give up my nurse traing. I have since worked in the caring sector, managing but always tired, but at the start of this year I bacame worse with symptoms of irritable bladder, IBS, widespread pain, joint pain and a feeling of swelling in cartain places. I came to a halt last month when my pain became virtulaaly unbareable, I was very emotional, and my mobility poor, climbing stairs was like climbing a mountain. Everythig hurt. My G.P investigated and found me to have Fybromyalgia with depression and Oesteo arthiritis in my neck. I am on treatment now with amitryptiline 50mg, paracetamol and ibrophen. I sleep better now since I have been on medication but still get pain and fatigue on doing any task. I feel about 90! I appreciated reading about other sufferers with fybro, as I did feel quite alone.
0 likes, 65 replies
dianepaterson
Posted
oh what a night i had last night.. was up and down with the pain and restless legs finally got to sleep at 630am prob the strain from the appeal carry on.. anyway... going some xmas shopping with my greig(16) today so he can carry any shoppin i get but also prob to see what
he can con me out off lol..
I have to look up OA as i dont have much info about it as i have it to but been concentrating more on the fibro. so hope tess and ses are not suffering to much with there OA today.
well just going to have a cup of t before getting ready to go out.. sending u all light hugs and hope ur all feeling well xx
SES
Posted
Just read back the post You said [quote:659cbcd775] i decided i had to see one of there medical advisers for the care apponnent and this tribunal was now adjourned[/quote:659cbcd775] Does this mean that you are entitled to the mobility component???? If you look on the low component criteria [quote:659cbcd775]Lowest:
* for people who need attention with bodily functions for a significant portion of the day
* or if aged 16 or over, are unable to prepare a cooked main meal.
Middle:
* for people who need frequent attention with bodily functions throughout the day
* or need continual supervision throughout the day to avoid substantial danger to themselves or others
* or need prolonged or repeated attention at night in connection with bodily functions
* or need someone to be awake during the night for a prolonged period or at frequent intervals in order to avoid substantial danger to themselves or others
* or regularly use a kidney machine at home or in a self-care unit at least twice a week, and this means they need attendance or supervision by another person. If renal dialysis is provided for them as a hospital outpatient under the NHS scheme, and with assistance from hospital staff, this will not normally entitle them to receive DLA [/quote:659cbcd775]
So if you have trouble with your hands then you have difficulty cutting , pealing potatoes etc so are unable to make a meal, I need help getting in and out of the bath when my hip and back locks. so this is probaby why they adjourned it as you say you need help but you say you can make a meal...... they are confused....... as low rate is set on this criteria? does this make sense? Hopefully though other problems you have stressed will out way the fact that you can make your meals :sad: I can assume though you have difficulty making meals but you have not stressed this enough?
Well Tess how are you with your OA? Mine is driving me mad and there is suppose to be blizzards and high winds so not looking forward to this weather...... I will be a hermit :oops: I am off for blood tests tomorrow for RF etc so I will get my results next Thursday when I see the doctor. I do hope you are coping Tess along with everyone else xxxxx
Take care everyone xxxxx
Dale
Posted
Thanx a lot for all the support :lol: My appt is so quick cos I was already seeing the rheumo for \"an auto-immune non-specific connective tissue disorder\" :shock: What sort of mouthful :shock: is that?! Maybe it has been FM all along?
Dale xxx
Squires
Posted
Yes I am coping Ses. Over the last few days knees have been killing me with Oa also my hands not been very good with the Oa. My wrists and fingers have been sore.
Looked after Sophie and Molly with my daughter Claire last night. Amy had Molly's first parents evening. The Teacher said if she had twenty like Molly she would be happy. :lol: She is doing well and quite forward for her age. Amy and her Partner thanked me for all the hard work i have put in when I looked after her as a baby until school. The only thing the teacher said was she was a bit quiet but that would change with confidence. Amy was like that quiet at school and made up for it when she came home lol.
Don't like this cold weather we are having. We have sun here at the moment but no doubt will change later. :lol:
Hope everyone is coping with their aches and pains today.!
Love Tess x x
paddy
Posted
Glad to hear Molly is doing so well, she is a credit to all of you. I think I must go back to GP at some point, as I think I have OA in my fingers and toes, like you Tess. Used to put it down to the Fibro, but since got diagnosis of oA in knees I`m not sure. Not sure of much at all these days! Lol
Hope your appointment goes well today Ses, and you finally get some answers and the right medication for your problems. Its so hard to know what is causing the symptoms when you have more than one condition.
Well just got hubby ready for his eye appointment at Addenbrookes this afternoon. Going to leave in good time in the hope of getting a disabled parking space. Kepp trying to remember what`s on my list of questions but think I`ll just have to read from it. Fibrofog has kicked in today, I can`t even type the letters in the right order, so if this message makes no sense you`ll know why!!
Take care all, Love Linda
dianepaterson
Posted
ilooked back at what i wrote in a earlier post and i put can cook a meal i forgot the t lol i cant cook a meal i need help getting in and out of the shower i have a board there that the O T gave me, i need all the critierer that they ask for so that what im fighting for.. like u all we deserve it.. i know people who get both and u should see how they run about and can do everything that we cant..
I am off to have a wee nap as i feel down today.. hope u all are well xxx di xx
dianepaterson
Posted
ses... i wrote earlier im lucky i get full mobility allowance and trying for some care part i do feel lucky i get mobility but as i said i feel all us fibro(and people who are as ill) deserve to get help i want the care allowance so i can afford maybe to get someone in to help, my husband works really hard on shift work as apolice officer and has a lot of care to do for me when he gets home.. yes i do have 3 teenagers but they do help if i ask them but i feel they need to have a life to as i lost my mum at 15 and know what its like watching ur mother ill..
anyway all good friends, all our lifes are different and all of us have same but different areas of pain on different days so i hope we can all continue having each other for support on here cause i am so grateful ur all here to talk to u dont know how much i mean that..
hope u all are at least in less pain and fatigue today and hope one day we might even have a meeting place for us all to finally meet up..
luv di xx ps do i have a pic next to my name????
paddy
Posted
No you don`t have a pic next to your name! Wouldn`t it be great if we could all feel well enough to meet up and cope with the travelling or whatever? I`m like you Di, it really means a lot to me to have you all to talk to, I was dreadfully lonely when I had to give up work in the spring, and then I found you all!! I really only have one good friend, who I see regularly, all the others got fed up with me never being able to go anywhere. I think they thought I was making it all up! Lol Who would want to make up all things we have to put up with?
You most certainly should get the care component Di! Although I can`t get into the bath without help, and that`s just to take a shower, I could never sit in the bath, I`d never get out again! I have trouble cooking a meal and getting dressed but they said I could do all those things and refused my claim. There seems to be lots of people who get these benefits who look as if they haven`t got anything wrong with them. It`s just not fair!
Well, I`ve coped quite well today, apart from nearly falling asleep at the hospital while waiting with ray for his app!! The news wasn`t particularly good, so I`ll probably go downhill tomorrow. There doesn`t appear to be much they can do about his sight, they are hopeful that the problem with the left eye can be at least made a little better with different glasses, but the loss of vision in the right is permanent.
Well Ses, I hope you got on OK at the doctors today. Tess I hope you are ok too. Well as much as we can be ok that is!
Love Linda
Squires
Posted
It is difficult Linda to know whats OA and what is Fibro. You could be right we having OA in other joints as well. Do you think there is some connection between Fibro and OA as most of us have both conditions. :cry: I am sorry it wasn't so good news for Ray today with his eyes. It is terrible trying to get parked at Addenbrookes at the best of times. You always have to leave early to get parking space. Thats what it is like at both Peterborough Hospitals. :cry:
Hope you had a good sleep Di and feel better for it. :lol: It would be good if we could all meet up lol. :lol: We will have to come visit you all in our motorhome lol. Travel all around the country. :lol: It is good that we all have each other on here to talk to and get us through the bad times. :cry:
We are all going to be strong and not let it beat us!
I hope you got on ok today Ses at your appointment and had a good outcome.
Take care everyone!
Love Tess x x
SES
Posted
Well Di, at least the DLA didnt try to do something about your mobility side of DLA as I wouldn't put anything past them???? anyway you fight hun, fight them all the way xxx
Oh Linda, you must be feeling the tense situation and your pain will be aggravated by your hubby's situation, bless you both xxx
Tess, you see you looked after your grand daughter and you kinda brought her up well so that is nice you are being thanked for your hard work, it is nice to be appreciated xxx, and yes it would be nice if we all met up maybe half way to where we all live so we would perhaps see from Di being in Scotland to anyone furtherest away????and meet between the two points??? but I think the summer would be the better time as this weather is crippling me!!!!
Anyway I had five blood tests done RF CR Protein and sed rate I do not know what the other ones were? but my arm is hurting where the blood was taken??? goto see the doctor next Thursday, I am going to have to go as the pain is really bad in my arms so I will love you all and leave you all for now ........ sweet dreams xxxxx
Squires
Posted
Your arm must feel sore with the blood tests. :cry: I have to go Monday and have four done two for thyroid TSH T4 and then Gluocose and Full Blood Count.
Will have to wait about a week for thyroid results so will make appointment to see gp after that see what is happening now with my levels. The other two results take a couple of days.
Its really cold here today but we do have some sun at the moment! Hope it is not too bad where you live Ses. Hope you get some answers when you see gp again on Thursday.
Take care everyone and keep warm :lol:
Love Tess x x
Skye
Posted
Well it was snowing here through the night. Woke up around 4ish (surprise surprise... :lol: ) and peeped out the top hall window....and there it was floating down! Mostly gone now though, but I think thats the calm before the storm.
Got another load of Christmas shopping done yesterday! My legs were totally killing me when I got home. I lasted 4 hours shopping! Thats a miracle for me at the best of times as its not my favourite pastime at all. Got all the perfume sets for the girls. Outfits for Kayla and Megan (grandchildren), wrapping paper, present bags, ribbons and bows, the works...
It`ll take me a week to recover.... :lol:
Take Care
Lindy....x
paddy
Posted
I hadn`t done a thing up to last Saturday! Usually been shopping long before that, but just couldn`t face it this year. Walking has become more difficult and if I can manage walking wise the fatigue takes over and I just have to stop! Went with my daughter to Toys R Us last Saturday and bought two presents, decided that was enough and over the past week I`ve nearly finished everything else on line!!
How are you Ses and Tess, we had a covering of snow first thing this morning and then it turned to rain, its brighter now but freezing. Not good for our aches and pains!
Love Linda
dianepaterson
Posted
well well i slept ok last night because i never slept the night before when i popped into see my sister yesterday t time i could hardly talk the fatigue just hit me, so i was in bed after x factor.. anyway im still working my way though trying to get xmas shopping down..we have 18 neices and nephews and god children on top so im about finished theres just to start on my own 3 next. but as u all say even if u have a day u feel u can go u pay for it for a couple of days after it..
going for a family meal tonight 26 of us for my husband johns sisters 25th anniversary so keeping my energy today for that.. my problem is i get so tired at events and sit there thinking i just want to go home..anyone feel like that?
i hope u all sleep well and hope ur not in much pain today...gentle hugs..di x
Squires
Posted
You are all putting me to shame getting all your christmas shopping done.
We usually give ours the money as they are all 20 and above now. So much easier for them to decide what they want to buy. I do my for Molly and Sophie. And some nieces and nephews. Also buy for my nephews four children who are all under ten. The youngest being a week younger than sophie at six weeks.
We did have snow as well Lindy & Linda but like you said if soon disappeared. We even had the sun out this afternoon. A real mixture of weather today. Hope we don't get more snow tomorrow as got to go for blood test and usually walk to drs.
I feel the same as you Di when I have a wedding or social evening to go to. I wake up in the morning and because I am so tired think oh I have got to go there tonight and don't feel like it. Normally ok when I get there lol. I hope you have a good evening and it doesn't tire you too much.
I think you all should have a good rest after all your christmas shopping.
You deserve it :lol:
I hope your hips are not causing you too much pain Ses. :lol:
Take care
Love Tess x x
Love Tess x x