poppy7
04-09-2008, 09:35 PM
Hi :) i came across this site tonight when i was trying to find out more about fibromyalgia... was diagnosed with it 2 weeks ago.... and i know it's probably already been asked before, but, can anyone tell me if there are any places or groups in the uk where i can get some more info about it please? My rheumatologist just threw a leaflet at me and basically told me to get on with things so i'm kinda going round in circles at the moment. really relieved to know that i'm not cracking up ! but kinda ratty to be left with so little info. so any help would be appreciated please . thanks x
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sweetjerseygirl
04-10-2008, 08:32 AM
Perhaps you can check your local newspaper for a support group, here in the states, they will post things like that. If not they go on the internet and do a seach for your area. A lot of the meetings are held at the hospital in my area, so perhaps you can check with them also. Good luck to you and hope you get to feeling better soon. Have a good one...........
gorgee
04-10-2008, 09:14 AM
Poppy7, welcome, and this is a wonderful place to be! I hope you use this as a place to seek help and make friends.
If you have questions we can help you, and try to answer them. I have had fibro since October, and have learned from all the wonderul, fantastic people here, and I feel so lucky to have found this site. This is my support group, and therapy.
I have met some of the most precious people here and I look forward to being here everyday, and I hope you can feel the same way. If you have questions start a new thread, and ask away! We will help you.
What medications did the dr put you on, and how are you feeling?
Kassandra
If you have questions we can help you, and try to answer them. I have had fibro since October, and have learned from all the wonderul, fantastic people here, and I feel so lucky to have found this site. This is my support group, and therapy.
I have met some of the most precious people here and I look forward to being here everyday, and I hope you can feel the same way. If you have questions start a new thread, and ask away! We will help you.
What medications did the dr put you on, and how are you feeling?
Kassandra
niecsey
04-10-2008, 10:28 AM
Hi Poppy lm in the Uk too! I have not been diagnosed. Great help you can bet here with these girls there great x
poppy7
04-11-2008, 07:35 PM
Hi and thanks for the replies everyone :)
I hadn't realised just how much info i could get from you guys on here so thanks. So far i've not found anything local to help me out, but i'll definitely be asking stuff on here..... at the moment i'm just so relieved to know that it's not just me going thru it.
anyway in answer to kass... the meds i'm on at the moment are : amitriptyline(think thats how you spell it !), omperazole, co-codamol, and a few gels and creams..... some days i feel like a chicken all basted up ready for the oven after i've been using them :)
still having a lot of side effects at the moment tho, but i'm sure i'll get it sorted out eventually !
anyway thanks for your messages of support and i'll definitely be back
take care all x
I hadn't realised just how much info i could get from you guys on here so thanks. So far i've not found anything local to help me out, but i'll definitely be asking stuff on here..... at the moment i'm just so relieved to know that it's not just me going thru it.
anyway in answer to kass... the meds i'm on at the moment are : amitriptyline(think thats how you spell it !), omperazole, co-codamol, and a few gels and creams..... some days i feel like a chicken all basted up ready for the oven after i've been using them :)
still having a lot of side effects at the moment tho, but i'm sure i'll get it sorted out eventually !
anyway thanks for your messages of support and i'll definitely be back
take care all x
suzanna80
04-22-2008, 10:41 AM
the meds i'm on at the moment are : amitriptyline(think thats how you spell it !), omperazole, co-codamol, and a few gels and creams..... some days i feel like a chicken all basted up ready for the oven after i've been using them :)
Really? All my Dr will prescribe to me is Paracetomal and tramodol. Does amitriptyline work for you? If it does I may ask, as the painkillers I'm currently on doesn't work.
Really? All my Dr will prescribe to me is Paracetomal and tramodol. Does amitriptyline work for you? If it does I may ask, as the painkillers I'm currently on doesn't work.
poppy7
04-22-2008, 11:53 AM
Hi Suzanna and welcome ! I'm sure that you'll find lots of help and information on this site as I have done. One thing I'm sure that you'll notice and may have probs with is convos about medication as obviously trade names are different here in the uk - most of the lovely ladies on here are from across the pond ! But there are a few of us Brits knocking about :)
Yeah sorry to get distracted there .. oopps :) Back to meds... amitriptyline hmmm definitely depends on the individual. I was started off on the lowest dose but it didn't seem to have the desired effect on me. Worked ok for a few hours a day then seemed to wear off quite quickly so I was put on the higher dose. Then the difference was really noticible, didn't seem to need to take co-codamol or other pain killers as often, BUT they made me dopey as hell ! I went from having major difficulties getting to and staying asleep, but with the high dose I've been known to sleep for over 14 hours solid. Sounds good when you're desperate for sleep and are exhausted all the time, but when you can sleep through your smoke alarm going off then it's not so great :(
I'm now taking just the low dose with co-codamol and ibuprofen which seems ok so far but i'm going back to my doc to see if I can try some alternatives.
Anyway, hope that helps.
Poppy x
Yeah sorry to get distracted there .. oopps :) Back to meds... amitriptyline hmmm definitely depends on the individual. I was started off on the lowest dose but it didn't seem to have the desired effect on me. Worked ok for a few hours a day then seemed to wear off quite quickly so I was put on the higher dose. Then the difference was really noticible, didn't seem to need to take co-codamol or other pain killers as often, BUT they made me dopey as hell ! I went from having major difficulties getting to and staying asleep, but with the high dose I've been known to sleep for over 14 hours solid. Sounds good when you're desperate for sleep and are exhausted all the time, but when you can sleep through your smoke alarm going off then it's not so great :(
I'm now taking just the low dose with co-codamol and ibuprofen which seems ok so far but i'm going back to my doc to see if I can try some alternatives.
Anyway, hope that helps.
Poppy x
kirstee
04-22-2008, 01:54 PM
Read "What Your Doctor May Not Tell You About Fibromyalgia" by Dr. St. Amand. This is an easy internet purchase, and will give you all sorts of good information. I also have a source in the UK. I sent her an e-mail and when I have more information from her that is postable, I will do so.
Blessings,
Kirstee
Blessings,
Kirstee
Nikonian
04-23-2008, 08:50 AM
Hi Suzanna & Poppy, I’m new here and from UK,
I was also diagnosed recently with FM, after visiting my GP almost fortnightly for 4 years he finally gave it a name and stopped saying you’re getting older!
I wake every day to crippling pain throughout my body, having spent most of the night awake under a fan to keep me cool, I spend the day in more pain, then at the magical hour of 4pm I HAVE to sleep or fall down, this coma like hour of sleep is followed by the most intense brain fog, often I am unable to speak for 20 mins after waking, etc, etc.
During these years I have seen all kinds of specialists, had brain scans, x-rays etc. I’ve also done the drugs, Amitriptyline, Doslulepin and variants, and painkillers like Ibuprofen, Paracetamol, Tramadol, and Co-codamol, though none of these helped with the pain and discomfort.
Unlike the vast majority here, I am Male and until very recently did manual work as part of my own business, this illness has finally worn me down to the extent that I have almost given work up completely.
I do however disagree with my GP’s diagnosis, I feel sure I have ME, I have a cousin who has had ME for 20 years now, talking with him has convinced me I also have this and not FM, after spending many hours on the internet looking and reading about these illnesses, I have come to the conclusion, if you don’t have any of the tender points associated with FM, then you most probably have ME (Unless you know better?)
Unfortunately it would seem these illnesses are so similar that it makes little difference what it’s called, neither have a cure or treatment to bring relief, not that I’ve found anyhow!
Well, I feel better for that little rant.
Regards
Lee
I was also diagnosed recently with FM, after visiting my GP almost fortnightly for 4 years he finally gave it a name and stopped saying you’re getting older!
I wake every day to crippling pain throughout my body, having spent most of the night awake under a fan to keep me cool, I spend the day in more pain, then at the magical hour of 4pm I HAVE to sleep or fall down, this coma like hour of sleep is followed by the most intense brain fog, often I am unable to speak for 20 mins after waking, etc, etc.
During these years I have seen all kinds of specialists, had brain scans, x-rays etc. I’ve also done the drugs, Amitriptyline, Doslulepin and variants, and painkillers like Ibuprofen, Paracetamol, Tramadol, and Co-codamol, though none of these helped with the pain and discomfort.
Unlike the vast majority here, I am Male and until very recently did manual work as part of my own business, this illness has finally worn me down to the extent that I have almost given work up completely.
I do however disagree with my GP’s diagnosis, I feel sure I have ME, I have a cousin who has had ME for 20 years now, talking with him has convinced me I also have this and not FM, after spending many hours on the internet looking and reading about these illnesses, I have come to the conclusion, if you don’t have any of the tender points associated with FM, then you most probably have ME (Unless you know better?)
Unfortunately it would seem these illnesses are so similar that it makes little difference what it’s called, neither have a cure or treatment to bring relief, not that I’ve found anyhow!
Well, I feel better for that little rant.
Regards
Lee
poppy7
04-23-2008, 09:58 AM
Hi Lee, at least I know it's not just me who feels that they should have their own parking space at the docs ! From what I've read on here there are many other people who have been visiting their docs for years and have only recently been diagnosed, although I know of a few who are still waiting for results ! Thinking back I'd been seeing mine since I was 16 - am now 30 and each time I been told it's just a virus or a variation of HSP which I had when I was 8 !
You said that you disagree with your doc... are you planning to seek a second opinion or just try alternative meds?- a few people have tried the homeopathic route instead and seem to be ok with that.
Anyway this site has definitely opened up my eyes to the alternative treatments which people are trying and if I were you I'd certainly look into it more.
Regardless of what the "name" is for what you have, at the end of the day it still sucks so you have all our support here !
Welcome to the club and Happy Ranting :)
Poppy x
You said that you disagree with your doc... are you planning to seek a second opinion or just try alternative meds?- a few people have tried the homeopathic route instead and seem to be ok with that.
Anyway this site has definitely opened up my eyes to the alternative treatments which people are trying and if I were you I'd certainly look into it more.
Regardless of what the "name" is for what you have, at the end of the day it still sucks so you have all our support here !
Welcome to the club and Happy Ranting :)
Poppy x
niecsey
08-29-2008, 06:13 AM
Hi Poppy and eeryone else :) Just wondering how your doing? Im in the Uk too and also should ahve my own parking place at the docs and my own bench! LOL Finally getting sent to the rheumy!!!! I was also giving amitriptyline to help with sleep and pain. Only thing is hubbys away for a few days and l was scared to take them last night (side effects etc) were you ok when you took them? Just need abit reassurance :( been up since 5 this morning , didnt go to sleep till after 1 this morning and lm shattered now :( Thansk again and hope your doing better xx
poppy7
08-29-2008, 10:42 PM
Hi Niecsey, wish I'd known your were still up at 5 the other morning, I'd only just turned off the pc when you posted ! We could have had a late night/ early morning moan to each other :) he he
Well as for the tablet situation..... the amitrip has now been altered so many times that it's very hit and miss for me now as to whether it works or not, have moved out of Leeds to Wirral and have had to register with a new gp, who unfortunately for me has now gone on maternity leave ! Grrr. Just when I was getting my meds into some sort of order as well. Noticed that the first thing she did was to change all of them completely as I mentioned that I'd been having some probs sleeping. Yes I'm also a late night poster on here ! The last few weeks I've been up til gone 5 in the morning, not dropping off til about 6 then surfacing about midday. Have tried changing my sleep pattern- early nights and all that but nothing seems to be working so far. Back on a highish dose of amytrip again to try and sort it out but like you I'm wary of this due to side effects. The worst one for me is they really knock me out so I'm like a zombie for the next few days. Not a problem you might think but when the fire alarm where I live goes off and you manage to sleep right through it ..... hmmm think I'll be trying half doses again and just seeing what happens.
Anyway enough of me, how are you managing to cope with lack of sleep/ late nights? Is your daily routine being disrupted completely or are you managing to keep track of things?!
Hope you have a pain free, decent nights sleep tonight
Poppy x
Well as for the tablet situation..... the amitrip has now been altered so many times that it's very hit and miss for me now as to whether it works or not, have moved out of Leeds to Wirral and have had to register with a new gp, who unfortunately for me has now gone on maternity leave ! Grrr. Just when I was getting my meds into some sort of order as well. Noticed that the first thing she did was to change all of them completely as I mentioned that I'd been having some probs sleeping. Yes I'm also a late night poster on here ! The last few weeks I've been up til gone 5 in the morning, not dropping off til about 6 then surfacing about midday. Have tried changing my sleep pattern- early nights and all that but nothing seems to be working so far. Back on a highish dose of amytrip again to try and sort it out but like you I'm wary of this due to side effects. The worst one for me is they really knock me out so I'm like a zombie for the next few days. Not a problem you might think but when the fire alarm where I live goes off and you manage to sleep right through it ..... hmmm think I'll be trying half doses again and just seeing what happens.
Anyway enough of me, how are you managing to cope with lack of sleep/ late nights? Is your daily routine being disrupted completely or are you managing to keep track of things?!
Hope you have a pain free, decent nights sleep tonight
Poppy x
niecsey
08-30-2008, 07:53 AM
Hi Poppy thank you so much for replying!!! x Sorry to hear of all your probs :( its hard to imagine light at the endo of the tunnel :(. Im crippled this morning esp in my rumpy parts of my back. My fingers are like sausages this morning l had to force my ring off thats never happened before. I also got my rheumy appnt this morning for 29th sept so not to long to wait. Im going to try the amitripy thing Monday its my bday tommorow and lve treated myself to a night ina cosy hotel not far fromhome 20 mins or so and l plan to jst chill just chilling somewhere else and having meals cooked for me lol there wont be no big night out cos l cant do it at all these days just a change of scenery, l hope l am not in this mess tommorow!! I was thinking of cutting the 10mcg tablet in half and trying half the dose first but some people say you shouldnt.. but never said why. I do have a pill splitter, have you tried halfing your dose? I only woke up at 10 this morning but l never went to sleep till way after 2 even though l was shattered all day yesterday. I had been to the docs the day before and ended up going shopping with a friend for hours silly isnt it? When you cant even go shopping without suffering for it? I can see how fast this thing is progressing now its funny how it sneaks up on you slowly over time then it grabs you and its got you hook line and sinker!! Sorry lm rambling lol oh what tiem do you take your amitrippy things? I was told to avoid morning drowsyness to take it about 8.oopm. off another board. I guess it will be a hit and miss thing. Im really tempted to take 5mcgs and not the 10 till l get the feel of it. Hope someone comes on and tells me theyve done it like that and it helped lol anyway l will stop for now and l hope you had a good nights sleep. Thanks again for your help :) it sure helps to know you are not alone sadly xx Have a good day Poppy xx
poppy7
08-30-2008, 10:17 PM
HAPPY BIRTHDAY ! woohoo :) I won't embarrass you by asking how old he he hope you have a lovely time you lucky thing- going off to a posh hotel ..... It certainly is lovely when someone else has the cooking and dishes to worry about !
Right back to the nitty gritty grr I usually take the amytrip tabs about 2 hours before I'm planning on going to bed, though most nights the time I get into bed then actually bother trying to get to sleep can vary by a few hours. Usually find I start reading for a few hours, or end up getting out of bed and messing about in the lounge as my back starts really aching :( The dose I'm on at the moment for amytrip is supposed to be about 30 mg but I've found that when I do take it they really knock me out. Though having said that some nights they don't have any effect that I'm aware of. The next day I'm usually really sluggish, feel like I'm walking in treacle ( I assume having never tried it !) and fog can be really bad for me then as well. When I first started on them my GP actually advised me to start on just 10mg but even that seemed to be effecting me severly so he told me to split the tabs into 5mg just for a few days so I'd have an idea of what the effects were for me. Must point out here that I've had several bad reactions with medication in the past, found out the hard way that I'm allergic to penicillin .... ouch ! I'm like you in that I bother to read all the notes that come with the tablets and to be honest sometimes I actually wonder if it's the tablets themselves that cause half the problems ! The first time I took one lot of medication my fiance at the time and I went through the list of side effects and the only ones I didn't have were a rash and penile dysfunction ! Let's just say that after reading that he was very careful to check the labels on tablets incase he got them mixed up :)
Grr losing track of what I'm typing here ! Have to keep scrolling back up ... oh for a fog free day !
Anyway one thing I do remember the doc saying to me is that starting on a low dose may take a bit longer to have a noticible effect on some people as it kind of needs to build up in their system.
Right I'm off to try and get some sleep- gone 2 o'clock again !
Catch you later
Poppy x
Right back to the nitty gritty grr I usually take the amytrip tabs about 2 hours before I'm planning on going to bed, though most nights the time I get into bed then actually bother trying to get to sleep can vary by a few hours. Usually find I start reading for a few hours, or end up getting out of bed and messing about in the lounge as my back starts really aching :( The dose I'm on at the moment for amytrip is supposed to be about 30 mg but I've found that when I do take it they really knock me out. Though having said that some nights they don't have any effect that I'm aware of. The next day I'm usually really sluggish, feel like I'm walking in treacle ( I assume having never tried it !) and fog can be really bad for me then as well. When I first started on them my GP actually advised me to start on just 10mg but even that seemed to be effecting me severly so he told me to split the tabs into 5mg just for a few days so I'd have an idea of what the effects were for me. Must point out here that I've had several bad reactions with medication in the past, found out the hard way that I'm allergic to penicillin .... ouch ! I'm like you in that I bother to read all the notes that come with the tablets and to be honest sometimes I actually wonder if it's the tablets themselves that cause half the problems ! The first time I took one lot of medication my fiance at the time and I went through the list of side effects and the only ones I didn't have were a rash and penile dysfunction ! Let's just say that after reading that he was very careful to check the labels on tablets incase he got them mixed up :)
Grr losing track of what I'm typing here ! Have to keep scrolling back up ... oh for a fog free day !
Anyway one thing I do remember the doc saying to me is that starting on a low dose may take a bit longer to have a noticible effect on some people as it kind of needs to build up in their system.
Right I'm off to try and get some sleep- gone 2 o'clock again !
Catch you later
Poppy x
niecsey
09-01-2008, 11:58 AM
LOL at the side eefects you didnt have LOL!!! Thanks for the happy birthday :) lm 43 but feel 93!! Well not a good tale to tell :( Woke up ill stayed in bed till after lunch pulled myself together and went even though l was ill :( got there what a surprise :) we were giving an upgrade as the room wasnt big enough to accomodate our daughter tioo and we were giving a suite!!! With 7ft wide bed, extra large jacuzzi lol 2 bedrooms tvs and fones everywhere it was lush! This picked me up abit... then we went for a meal when my back started niggling........ got up after the meal and could not move! the pains were horrendous and come round to my stomach mid upper back where the bra fastens and also right sacrum area pain lm sure lve disc trouble how l got back to the room is beyond me :( I lay on hot water bottles from 8.30p.m... l never even got to try the jacuzzi l couldnt move :( but l again :( Had a shower this morning ,massive shower lol, went to brekkie and it started again :( then the car broke down LOL lve got to laugh had to get a taxi home and send recovery for the car now lm back on the bed with the hot water bottles!!! When my back starts my legs had pins and needles and felt so heavy. I couldnt straighten up other wise l go into spasm. lm sure l have spinal problems too. Ive held off ringing the doctor cos l realy dont want to go to hospital, l know what to look out for cos hubby has spinal probs so if l was to stop urinating etc then l would have to ring for doc asp. After reading you post lm going to split the pill tonight and see how l do. Also if lm still bad with the back probs lm going to have to see the doc tommorow :( Im sorry lve moaned lol If lm ok l will come on tommorow and let you know how lve went with amytripi :) You take care and thanks for helping me Poppy xxx
poppy7
09-02-2008, 02:01 PM
Hi Niecsey, awww what a shame about your night away :( don't know what's worse, the car breaking down or not getting to test the jacuzzi ! Lovely that you were given an upgrade to a suite.... posh or what?! Sounds like the rest of your stay was definitely a case of laugh or cry ... I'd have probably ended up stretched out on the bed, drunk, singing "it's my birthday and I'll cry if I want to !"
It's terrible though when you realise that when it comes to packing to go away, the hot water bottle and tablets are now the first things we pack ! I had the misfortune of being stopped last time I went away as there was something in my case they weren't sure of.... yep it was the three hot water bottle I'd packed... well I was going to Lanzarote so I can see why there would be some puzzle over me packing those !
Hope your back is a bit better than it was the other day, that's the one part I tend to worry about more than anything when it comes to pain... and with your husband having back probs as well at least you're more aware of what to look out for.
Did you try the amytrip last night like you mentioned? If so, any joy? I ended up having to have a very early night for once - was quite disgusted with myself really, in bed by 12 'cos of migraine. After I'd taken tablets for that and some of my other meds, I was sick of the sight of tablets so ended up not taking the amytrip. Surprisingly enough I slept right through til 7.30 this morning :) Ached all over and took over 5 mins rolling about to actually get out of bed but for a few hours this morning I actually felt half human ! Haven't felt as good as that in ages so decided to make the most of it. Knew I'd probably suffer for it this afternoon but was so worth it to get all my ironing, washing and cleaning done.... feel like I should have a medal now :D
Anyway I'm off now to get something to eat. Came round to mum's this afternoon and persuaded her that she wanted to feed me tonight ! Will probably end up doing the washing up later but I'd rather that than messing about in the kitchen.
Catch up later hopefully :)
Poppy x
It's terrible though when you realise that when it comes to packing to go away, the hot water bottle and tablets are now the first things we pack ! I had the misfortune of being stopped last time I went away as there was something in my case they weren't sure of.... yep it was the three hot water bottle I'd packed... well I was going to Lanzarote so I can see why there would be some puzzle over me packing those !
Hope your back is a bit better than it was the other day, that's the one part I tend to worry about more than anything when it comes to pain... and with your husband having back probs as well at least you're more aware of what to look out for.
Did you try the amytrip last night like you mentioned? If so, any joy? I ended up having to have a very early night for once - was quite disgusted with myself really, in bed by 12 'cos of migraine. After I'd taken tablets for that and some of my other meds, I was sick of the sight of tablets so ended up not taking the amytrip. Surprisingly enough I slept right through til 7.30 this morning :) Ached all over and took over 5 mins rolling about to actually get out of bed but for a few hours this morning I actually felt half human ! Haven't felt as good as that in ages so decided to make the most of it. Knew I'd probably suffer for it this afternoon but was so worth it to get all my ironing, washing and cleaning done.... feel like I should have a medal now :D
Anyway I'm off now to get something to eat. Came round to mum's this afternoon and persuaded her that she wanted to feed me tonight ! Will probably end up doing the washing up later but I'd rather that than messing about in the kitchen.
Catch up later hopefully :)
Poppy x
niecsey
09-07-2008, 09:22 AM
Hi Poppy x thanks for the reply :) sorry l couldnt reply earlier lve been really bad had the doc in friday not that they could do anything... the pains in my back well all over were horrendous l had pain allover but mainly the back everywhere that is the worst lve ever had it l guess it was a flare? lm still not right lm actually typing in bed so excuse any typos :) lve only been taking 5mcgs of amytrippy its notto bad and most mornings the aching is less as muscles must be relaxed :) l will increase the dose in the next few days.How you doing? I hope you still feel pretty human? The doc doesnt think its any disc probs buts ive to get them back out if things get worse this was my worst time ever l could hardly walk! Never mind sorry this is short but lm aching lying typing and dont want to over use muscles or whats left of them lol otherwise l will suffer later for it! I will keep in touch thanks again Poppy you take care xxx
poppy7
09-07-2008, 11:18 PM
Aww niecsey (hugs) it's great to hear from you. Had a feeling you might have been laid up with your back, just hope it eases off soon for you and isn't more serious. I've had flares like that before- back or kness going but not as bad as you've got it by the sound of things :( Glad to hear that the amitrip is having some effect for you, actually being able to move of a morning without aching too much is always a relief :) Feeling that little bit better always seems to help the rest of the day go easier.
Well as for me... thanks for asking.... ache all over and I'm completely shattered but it's my own fault for trying to do too much over the last few days ! New guy on the scene (see relationship issues) and so far I've had more of a social life in this last week than I have all year :D Only downside to it though is it's completely wiping me out ! As I mentioned in the other post he's been really great so far- very considerate which is nice but I'm still at that stubborn stage of trying to keep up with him- telling him I'm fine when in reality I'd just like to curl up with a hot fuzzy chick and sleep for a week :D (fuzzy chick is one of those microwaveable wheatbag ones incase you thought I'd gone slightly mad there) Have been out again this evening for a few hours but I think that I'll need a few days recovery time before I next venture out. Even he picked up on the fact that I was suffering tonight, probably the fact that I'd gone as white as the wall behind me as I'd forgotten to take my pain meds before going out :( worst part being I usually keep some tablets in the car but I'd taken them out the other day when I cleaned it so had a nightmare journey trying to drive back home. Drive should have been 20 mins, ended up taking over an hour as I kept having to pull over. That'll teach me to clean my car ! All in all I'm suffering but very happy :D Oh well, it's now 3.15 am and the typos are starting to kick in no doubt so I'm going to hit the horlicks and head for bed. Hope you're up and about soon.
(hugs)
Poppy xxx
Well as for me... thanks for asking.... ache all over and I'm completely shattered but it's my own fault for trying to do too much over the last few days ! New guy on the scene (see relationship issues) and so far I've had more of a social life in this last week than I have all year :D Only downside to it though is it's completely wiping me out ! As I mentioned in the other post he's been really great so far- very considerate which is nice but I'm still at that stubborn stage of trying to keep up with him- telling him I'm fine when in reality I'd just like to curl up with a hot fuzzy chick and sleep for a week :D (fuzzy chick is one of those microwaveable wheatbag ones incase you thought I'd gone slightly mad there) Have been out again this evening for a few hours but I think that I'll need a few days recovery time before I next venture out. Even he picked up on the fact that I was suffering tonight, probably the fact that I'd gone as white as the wall behind me as I'd forgotten to take my pain meds before going out :( worst part being I usually keep some tablets in the car but I'd taken them out the other day when I cleaned it so had a nightmare journey trying to drive back home. Drive should have been 20 mins, ended up taking over an hour as I kept having to pull over. That'll teach me to clean my car ! All in all I'm suffering but very happy :D Oh well, it's now 3.15 am and the typos are starting to kick in no doubt so I'm going to hit the horlicks and head for bed. Hope you're up and about soon.
(hugs)
Poppy xxx
niecsey
09-10-2008, 07:25 AM
ya Poppy x :) good luck with the relationship!!!! My hubbys been great these past few weeks cos seriously l cannot do a thing!!!! I thought l was over the worst and done some things yesterday which meant going out and sitting around and suffered for it when l got back home :( lm not over whatever this is :( whatever it is it has had me up through the night in my left side of my ribs this time goign round my side, l woke up groaning through the night so now l must increase the amytrippy. Im back to square one lm shuffling about aching and terrified the muscle spasms are going to start again :( lm due to go see the doc this week concerning the amytrippy effect on me... l see the rheumy the 29th l dont think l can manage like this for nearly another 3 weeks!!! i got so angry the other day and by tea time l was past myself cryng with frustration and wondering what the hell is next for me. Are back probs common in people with fibro? or does it feel like your spine/discs are knackered for want of a better word lol? Not staying on long but just had to make contact with the outside world lol Yesterday l opened a packet of cuppa soup and my hand went straight into a spasm! That was opening a paper packet! eek by the way my miscrowave friend is called 'my sausage' lol Anyway hope your feeling abit better today and take care of yourself and enjoy your new relationship sorry if lve rambled lol catch you later on Poppy xxx
poppy7
09-18-2008, 11:34 PM
Hi Niecsey, hope your trip to the doc regarding amytripy went ok and you managed to get some answers from him. Sorry for the late reply but I've had a really bad flare over these last few days and on top of which my laptop decided to join me ! The pair of us have been neither use nor ornament :( but now (fingers crossed) we're bouncing back a bit :)
I did have an appointment to see my doc re changing my dose of amytripy again and new pain meds but had to cancel cos of being in too much pain to go ! Typical really. Hopefully I'll be able to sort something out next week as the co-codamol and ibuprofen are starting to lose their magic... Have been looking at some of the meds others have mentioned on here so am thinking about making a list and taking it with me- assuming I remember to take the list ! Fog has been a major issue lately as well, at the stage where I don't know if I'm coming or going ! Tonight has been a bit of a nightmare as I was in college and kept losing track of what was happening- not good in my second week and then to top it off new guy (NG) came round for a few hours and had the joy of witnessing me stretched out on the sofa like a dead duck :( pain was so bad the meds didn't kick in for quite a while so god only knows what he must have thought. He would have got a better conversation out of fuzzy duck than me !
Fuzzy duck says hi to lil sausage by the way !
As far as back probs go, from what I've heard so far, yes they are common with fibro. When I was first dx, I was given the basic leaflets on fibro, reactive arthritis and back probs and told that I should read the back one as it kind of goes hand in hand with it. I know that I do have back probs and being tall doesn't help much either but even simple actions can trigger off back probs for me. When you mentioned having a fight with the cuppa soup and your hand going into spasms reminded me of a similar incident a few months ago... I tried to tear a packet open and ended up putting my back out for 3 days ! Apparently just the sudden movement jerked a muscle in my back leaving me in agony- walked like a duck for the rest of the week so now I always open those packets with a pair of scissors and a prayer !
Right I'm heading off to bed shortly as the co-codamol is starting to kick in and I'd like to be there when it does :D
Hope you're feeling better than last time and have been able to make some contact with the "outside" world :)
(hugs)
Poppy xxx
I did have an appointment to see my doc re changing my dose of amytripy again and new pain meds but had to cancel cos of being in too much pain to go ! Typical really. Hopefully I'll be able to sort something out next week as the co-codamol and ibuprofen are starting to lose their magic... Have been looking at some of the meds others have mentioned on here so am thinking about making a list and taking it with me- assuming I remember to take the list ! Fog has been a major issue lately as well, at the stage where I don't know if I'm coming or going ! Tonight has been a bit of a nightmare as I was in college and kept losing track of what was happening- not good in my second week and then to top it off new guy (NG) came round for a few hours and had the joy of witnessing me stretched out on the sofa like a dead duck :( pain was so bad the meds didn't kick in for quite a while so god only knows what he must have thought. He would have got a better conversation out of fuzzy duck than me !
Fuzzy duck says hi to lil sausage by the way !
As far as back probs go, from what I've heard so far, yes they are common with fibro. When I was first dx, I was given the basic leaflets on fibro, reactive arthritis and back probs and told that I should read the back one as it kind of goes hand in hand with it. I know that I do have back probs and being tall doesn't help much either but even simple actions can trigger off back probs for me. When you mentioned having a fight with the cuppa soup and your hand going into spasms reminded me of a similar incident a few months ago... I tried to tear a packet open and ended up putting my back out for 3 days ! Apparently just the sudden movement jerked a muscle in my back leaving me in agony- walked like a duck for the rest of the week so now I always open those packets with a pair of scissors and a prayer !
Right I'm heading off to bed shortly as the co-codamol is starting to kick in and I'd like to be there when it does :D
Hope you're feeling better than last time and have been able to make some contact with the "outside" world :)
(hugs)
Poppy xxx
niecsey
09-19-2008, 07:03 AM
Hi ya Poppy x lil sausage says hi to fuzzy duck! LOL (sounds rude eh? hahahaha) Soz your not very well :( l thought l was over my flare but yesterday l mopped the bathroom floor and my back started and this morning my muscles hurt so bad :(... its one step forward and many back isnt it? I found an excellent site about fibro and how it effects the spine it brought so much comfort and sense l would give the link but its on the main pc in my favs and this is my daughters laptop its all l can manage when my backs like this l cant sit at the pc!!! The doc said l was ok on 5mcgs of amitrippy so lm still on that... one thing lve noticed is if lm goign to sleep and lm disturbed l get really aggitated but when l wake up the next day lm not aching most mornings. I cant wait for my rheumy appnt. lve waited for so long for someone to listen l hope hes not one who doesnt believe in fibro!!! Ive heard this happens!! I think lve been foggy too lve been talking on phone and forgot what lm talking about lol repeating myself etc lol l must sound nuts! Anyway l hope your fit for your boyfriend this weekend lol if not tell him to join you on sofa! Im sure he wont mind :) Take care Poppy and thanks for your reply and been my fibro friend xxxx
poppy7
09-20-2008, 12:00 AM
Hiya Niecsey, yeah you're right....it did sound rude but gave me a well needed laugh though :D Think I've found either the same site or similar one about back probs that you mentioned, loads of info on it which is good, though the one I've found mainly seems to relate all probs to over doing stuff or exercise which is certainly something I'm not guilty of ! Hey if we can't open our cuppa soups or mop the floor without repercussions ...... grrr not even going to look at my soap box here ! The only solutions this site mentioned were exercise based or drugs.... so nothing new there then. Hey if I went to a gym I'm be barred for putting everyone else off with the rattling from the amount of pain killers I've taken over the last week !
By what you're written, I'm assuming you've not been to see this rheumy before? If so, then this is where I'm going to sound like your mum now and tell you to get your list of questions ready written out for him :) I've had to get a folder for my doc and every time I have any questions they get written down and put in there.... he dreads the sight of it now! But it works well for both of us so far. Just waiting to get another appointment with my gp so I can get a referral to a local rheumy as my last one was based up in Leeds and I'm certainly not doing a 3 hour drive to go see him. So far the guys I've seen have been pretty clued up on fibro and take it seriously so with any luck you'll be fine with yours. The one problem I found was that I rarely got to see him - most appointments were with his registrars so ended up seeing roughly 7 different ones over a few months. Put in a complaint about this as I felt that they were all giving conflicting advice regarding medications and activity but this worked out ok as I ended up seeing just the one person eventually. Felt bad that I had to do this, but I felt that I needed some continuity when I was being dx. One thing I will mention here is that I had to keep my own list of what tests I'd had carried out as several registrars tried to duplicate some of them- mainly the x-rays and scans. Not sure whether you're past this stage yet but if not, then it's something to think about. It was only cos I'd been training as a radiographer that I was aware of this, the potential risks and knew that often x-rays go missing so rather than chase them up, often docs will just repeat them.
Right as you may notice from the time on here it's coming up to 4 in the morning and I've not long been in from a night out with new guy. As far as that goes.... well let's just say I'm sat here with a grin on my face that the cheshire cat would be jealous of ! We didn't make it to the sofa is all I'm saying here :) so to spare my blushes any more I'm off to bed as I've an early start in the morning.
Oh and leave that mop alone incase you get any more ideas ! Hope you're feeling better soon (hugs)
Poppy xxx
By what you're written, I'm assuming you've not been to see this rheumy before? If so, then this is where I'm going to sound like your mum now and tell you to get your list of questions ready written out for him :) I've had to get a folder for my doc and every time I have any questions they get written down and put in there.... he dreads the sight of it now! But it works well for both of us so far. Just waiting to get another appointment with my gp so I can get a referral to a local rheumy as my last one was based up in Leeds and I'm certainly not doing a 3 hour drive to go see him. So far the guys I've seen have been pretty clued up on fibro and take it seriously so with any luck you'll be fine with yours. The one problem I found was that I rarely got to see him - most appointments were with his registrars so ended up seeing roughly 7 different ones over a few months. Put in a complaint about this as I felt that they were all giving conflicting advice regarding medications and activity but this worked out ok as I ended up seeing just the one person eventually. Felt bad that I had to do this, but I felt that I needed some continuity when I was being dx. One thing I will mention here is that I had to keep my own list of what tests I'd had carried out as several registrars tried to duplicate some of them- mainly the x-rays and scans. Not sure whether you're past this stage yet but if not, then it's something to think about. It was only cos I'd been training as a radiographer that I was aware of this, the potential risks and knew that often x-rays go missing so rather than chase them up, often docs will just repeat them.
Right as you may notice from the time on here it's coming up to 4 in the morning and I've not long been in from a night out with new guy. As far as that goes.... well let's just say I'm sat here with a grin on my face that the cheshire cat would be jealous of ! We didn't make it to the sofa is all I'm saying here :) so to spare my blushes any more I'm off to bed as I've an early start in the morning.
Oh and leave that mop alone incase you get any more ideas ! Hope you're feeling better soon (hugs)
Poppy xxx
niecsey
09-20-2008, 01:05 PM
Hi ya Poppy :) hope you have recovered from last night LOL! And your bones are not aching!;)lol... yea your right it will be my first time to see the rheumy l havnt had a thing done to me other than blood tests and a short course of physio. Im a bit scared now its getting closer... esp when l feel so awful.. you start imaging there going to find alsorts lol anyway l suppose its a step in the right direction now at last lve been keeping a diary so should l have one of those days whenl cant remember anything its all on paper! Im not aching today but l feel so exhausted and anxious :( went out for an hour for some retail joy lol didnt get anything(have no interest at min) for myself and to be honest was glad to head home feeling as crap as l do. I understand what you mean about seeing different people all the time its like that at my gps and you end up trying to explain yourself over and over again and getting different advice etc so l now make sure l see the same go if possible. Going to have a ride up to the hospital to find out where l have to be its not my local hospital they dont have a rheumy there so l was told so l want to know where l have to be next monday night yea anight time appointment!! How did you have to travel for 3 hours to see your rheumy??? That sounds along way to go!!! Oh that site you found l think l know which 1 you mean it is not the one l found though it ust mentions how fibro affects the spine and nerves etc and how the pain come sabout etc l will get on the other pc and find it again it really helps you understand whats going on. Soon as l get on the other pc l will put it on here l promise. Well just a quickie lol lm going to have an hours sleep if l can and its only about 5 in the evening here lol catch yu later xxx
poppy7
09-21-2008, 11:43 AM
Hi Niecsey, yeah just about recovered thanks ! Was well worth it though :)
The three hour journey is because I was living in Leeds when I was first dx and was seeing a local rheumy there. Have since moved back home to be nearer to family and have had to re-register with my old gps. The annoying thing there is since I was away all the docs have changed apart from one whom I never really liked anyway so I've had to see a different one each time until I can sort of work out who is ok and who's not. I was told by the rheumy guy in Leeds that I could still go and see him if I wanted but that's roughly a three hour drive for me so it aint gonna happen ! The three hours to get there don't really bother me too much, it's just the three coming back that would finish me off :( Am actually ok with the driving part it's just the sitting part that my butt disagrees with ....otherwise I'd have no problems finding someone else to drive.
I'm surprised at them offering you physio considering you've not seen a rheumy yet, I asked about seeing one at some stage and no-one seemed to think it necessary. In fact some of the registrars I spoke to seemed to think that it might do more harm than good, especially as I do get back problems and not getting something right in physio might trigger off a flare. Think I'll just stick to the swimming- know my limits there at least.
Aww pity you felt so bad during your shopping trip and had to come home, as my friend says if a woman walks out of the shops empty handed then there's definitely a problem ! If it's any consolation I'm planning a shopping trip myself sometime this week so I'll treat myself to a cream cake in your honour ! hehehe any excuse :D
Did you manage to find out whereabouts you're going to see the rheumy? Nothing worse than having an appointment and not having a clue where you're to go. Been like that loads of times, wandering around the hospital looking for non-existent signs, for departments that none of the staff have ever heard of then finally having to ask directions from somone who turns out to be a visitor who is also lost ! Oh joy :)
Right I've got my rambling head on today as you can probably tell so I'm going to toddle off to the kitchen for a cuppa and some biscuits with any luck. Hope you're feeling ok today and are not getting too stressed out about your appointment.
(hugs)
Poppy xxx
The three hour journey is because I was living in Leeds when I was first dx and was seeing a local rheumy there. Have since moved back home to be nearer to family and have had to re-register with my old gps. The annoying thing there is since I was away all the docs have changed apart from one whom I never really liked anyway so I've had to see a different one each time until I can sort of work out who is ok and who's not. I was told by the rheumy guy in Leeds that I could still go and see him if I wanted but that's roughly a three hour drive for me so it aint gonna happen ! The three hours to get there don't really bother me too much, it's just the three coming back that would finish me off :( Am actually ok with the driving part it's just the sitting part that my butt disagrees with ....otherwise I'd have no problems finding someone else to drive.
I'm surprised at them offering you physio considering you've not seen a rheumy yet, I asked about seeing one at some stage and no-one seemed to think it necessary. In fact some of the registrars I spoke to seemed to think that it might do more harm than good, especially as I do get back problems and not getting something right in physio might trigger off a flare. Think I'll just stick to the swimming- know my limits there at least.
Aww pity you felt so bad during your shopping trip and had to come home, as my friend says if a woman walks out of the shops empty handed then there's definitely a problem ! If it's any consolation I'm planning a shopping trip myself sometime this week so I'll treat myself to a cream cake in your honour ! hehehe any excuse :D
Did you manage to find out whereabouts you're going to see the rheumy? Nothing worse than having an appointment and not having a clue where you're to go. Been like that loads of times, wandering around the hospital looking for non-existent signs, for departments that none of the staff have ever heard of then finally having to ask directions from somone who turns out to be a visitor who is also lost ! Oh joy :)
Right I've got my rambling head on today as you can probably tell so I'm going to toddle off to the kitchen for a cuppa and some biscuits with any luck. Hope you're feeling ok today and are not getting too stressed out about your appointment.
(hugs)
Poppy xxx
niecsey
09-21-2008, 12:35 PM
Hi ya Poppy :) ramble all you like lol lm really foggy today my words are coming out all mumbled lol Will find out next week where lm going to at the hospital my mam has to go to the same hospital so will have a look around then. The physio was offered to me whenl went to see one of the regular docs (our docs is like yours dif ones there all the time) l went for about the 250th time about my aches and pains mainly my back and when he asked me how he could help me l started coming out with 10 million symptoms he stopped me and said l havnt much time tell me whats bothering you most! Cheeky git no wonder it takes people ages to get diagnosed with anything! anyway mny back was really bad that day and he couldnt believe how many knots l had not that l know what they are... so he offered me physio l only had a few sessions and l was worse afterwards believe me! Then on my last visit my lower back had been fine for a few weeks so she said l didnt have to go back anymore which was a relief however she gave me some exercises to do and one of them was to pull your lower stomach in x amount of times a day and lm sure that starts my upper back off so lve stopped doing them they wernt doing anythign for my lower back anyway. By the way the same doc said to me normally when you get in your 70's you start moaning of these aches and pains... maybe your getting them earlier! You should of seen my face l was mortified thinking gawd have l got to stay like thia?????? Never mind :) anyway enjoy the rest of your day and l will catch you later :) take care Pops xxx
poppy7
09-23-2008, 12:46 AM
Awww niecsey sorry but I had to laugh at your comments about what the doc said about back probs in your 70's and getting them early ! One cod I saw said exactly the same to me - I was mortified ! Would have slapped him if I'd been able to move that day- took me all my time to walk into the surgery to see him Grrrr he he ! Well after your experiences with the physio I think I'll be giving that a miss for now, like you when I suffer with back probs.... I suffer ! Guess all you can do is think that it's just a temporary thing and it might just right itself with time..... fingers crossed.
As you can probably tell by the typos in this fog is affecting me badly today... gave up trying to talk by early afternoon as everything came out completely wrong. Ended up just pointing at stuff I wanted round the house when I was at mums earlier as even simple words completely eluded me. Even my dog was referred to as the "fluffy thing" as her name and the word "dog" were completely alien to me ! Poor thing.
New guy came over this evening for a few hours and I think that tonight was definitely a make or break night between us. Have been a bit miserable today- prob hormones as it's nearly that time...... you know what I mean... and have been happily counting the hours bewteen pain meds. Was relatively quiet for once when he first got here, was managing to keep myself together then completely lost it. Started crying my eyes out like a baby over something really stupid. The poor lad was completely stunned at first- wasn't sure how to react, then realised what was happening and did nearly everything in the book to help. Fuzzy duck was shoved in the microwave, duvet was dragged onto the sofa and he finished off the ironing that I'd started earlier ! Couldn't believe what was happening and how nice he was being so that got me crying even more :( He had only planned to stay for a few hours as he's up early for work but he insisted in staying til an hour ago til he knew I was ok. Am in a complete state of shock still but in a good way :D
Just hope he forgives me when he drags himself into work tomorrow morning ooppps.
Anyway I'm going to make a move to the kitchen now for the next lot of meds and a cuppa.... hope you've had a good day.
Speak to you soon
Poppy xxx
ps it was a doc I saw, not a cod :D damn fog ! lol
As you can probably tell by the typos in this fog is affecting me badly today... gave up trying to talk by early afternoon as everything came out completely wrong. Ended up just pointing at stuff I wanted round the house when I was at mums earlier as even simple words completely eluded me. Even my dog was referred to as the "fluffy thing" as her name and the word "dog" were completely alien to me ! Poor thing.
New guy came over this evening for a few hours and I think that tonight was definitely a make or break night between us. Have been a bit miserable today- prob hormones as it's nearly that time...... you know what I mean... and have been happily counting the hours bewteen pain meds. Was relatively quiet for once when he first got here, was managing to keep myself together then completely lost it. Started crying my eyes out like a baby over something really stupid. The poor lad was completely stunned at first- wasn't sure how to react, then realised what was happening and did nearly everything in the book to help. Fuzzy duck was shoved in the microwave, duvet was dragged onto the sofa and he finished off the ironing that I'd started earlier ! Couldn't believe what was happening and how nice he was being so that got me crying even more :( He had only planned to stay for a few hours as he's up early for work but he insisted in staying til an hour ago til he knew I was ok. Am in a complete state of shock still but in a good way :D
Just hope he forgives me when he drags himself into work tomorrow morning ooppps.
Anyway I'm going to make a move to the kitchen now for the next lot of meds and a cuppa.... hope you've had a good day.
Speak to you soon
Poppy xxx
ps it was a doc I saw, not a cod :D damn fog ! lol
niecsey
09-23-2008, 11:18 AM
LOL@COD!!! lol thought you were calling you doc an old fish LOL!! lm not having a good day either... woke up with mega flu type symptoms l am aching all over and went back to sleep on the sofa at 9 this morning :( think that costo thing is starting back up too as l dusted my room last night as it was starting to look like a room from a haunted house! Its a wonder l havnt got breathing problems lol hubby said he would do it but it would of been half a job and l get mad lol good on you getting an understanding boyfriend! Hope he stays house trained! lol Just for the record this threads starting to look like an msn chat page between us l hope others do not think they cant join in cos there more than welcome :) the more the merrier to this party :) thoughtl l might of went to the docs today feeling as bad as l was but l held off l hate this it seems to be non stop these days! I avnt even made it into the bath or shower yet as l ache so much l feel like a tramp! Hope your feeling abit better when you find this :) and l will catch you later x ps my lil sausgae has been in miscrowave too lol actually its in more these days than any food that gets in it lol take care Pops xx