Recently (suspected) fibro.

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Recently (suspected) fibro.

Postby debzdrew » Tue Nov 11, 2014 3:45 pm

Hi to everyone out there..... I got told by my GP that she suspects I have Fibromyalgia..... for over 2 years my energy levels have got less and less..... I get many aches and pains..... 2 years ago I would be up at 7am...hit the floor running and stop running when I climbed back into bed at 10pm.... my husband would then have to tell me to shut up talking so he could sleep as he was up real early for work/ these nights I would read in bed till 11/midnight..... and still have no problem getting up at 7am and doing it all again.....

I have a three story house....4 children...dog.... I could easily get my youngest to school...scrub my house....walk my dog 3 times a day....go shopping or meet friends for coffee...so on and so on.... NOW.... I fight to get out of bed each morning and it seems to take everything I have to take my youngest to school and do a few small chores.... I rely on my oldest to run my dog before she heads to college.... each day anywhere between 11:30....2.pm I fight to stay awake... I eat paracetamol daily... and I just started Amitriptyline 2 weeks ago....

I have read up as much as I can on this condition and read many of the posts on here...my heart goes out to each and everyone of you... I know the daily struggle all to well..... I am diabetic too and spent most of the last 2 years blaming the diabetes for the pain and lack of energy....also blaming myself... being bone idol... unfit...everything you can imagine.... I have had more blood test than stars in the sky (exaggerating a bit there) I been through 2 endoscopies...Brain scans (looking for epilepsy) brains wave tests... and come back with NOTHING.... I have no physical reason to be like this..... my children have to write on a daily list (what I need to do or remember) if they need anything because I forget.... the frustration some days is unbearable....

Although I have done much research I still can't seem to accept this... I cant seem to get my head round being such a bouncy full of energy person to struggling daily with simple tasks.... it is early days for me... but does anyone else have the same problem accepting this? Sometimes I even feel it is a cop out from the doctors... they can't find anything wrong so telling me this so they can fob me off and send me home with a hand full of pills.... any advice would be greatly welcome....

I am really struggling....seem to be crying more and more.... I can't live like this... I spend my life sat staring out a window, because I spent what energy I have trying to keep on top of my children's needs and the housework!!! some days I hurt so much I can't do anything. My home feels like a prison... Will this get any better? In need of a friendly chat.....Debz.
Last edited by FluppyPuffy on Tue Nov 18, 2014 3:30 pm, edited 1 time in total.
Reason: Split paragraph into smaller ones for easier reading.
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Re: Recently (suspected) fibro.

Postby Patsb » Tue Nov 11, 2014 4:21 pm

I feel for you.after numerous tests. I was told by a rheumatologist that the " only thing he could put my symptoms down too was fibromyalgia "
I have tried numerous medicines and pills to no avail.im now just taking 10 mg amyltriptyline nightly co codamol for pain Valium 5 mg ( gp won't up dose so I ration them and take 2 at once when I'm desperate) antacid tablets and suppositories for constipation which I buy myself.
I stopped going to the surgery over a year ago as I felt I was wasting my time.im in constant pain and havnt left home for 12 months.
I hope you have more success than I have in getting help and pain relief. :flowers:
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Re: Recently (suspected) fibro.

Postby Helhit » Tue Nov 11, 2014 4:30 pm

Hi Debz

I think that everyone on this forum will say that we have found it really difficult to come to terms with fibro - and actually still am

You're going through the stages of grief for what you once were and what you are now. It will take time, but you will feel better about how you and your life is now.

Look up pacing and meditation (including body scan), as these are the best coping mechanisms I've found.

Once you've mastered pacing, life becomes easier to manage.

Also cognitive behavioural therapy worked wonders for me. Your doctor could refer you for that.

Any time you have a question or just want to talk , use us. The beauty of this illness is that there'll always be someone awake cos we're all such awful sleepers.
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
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Re: Recently (suspected) fibro.

Postby taracidre » Tue Nov 11, 2014 4:58 pm

Hello
Its always hard to suddenly have to stop something you have always done without thinking about it or to find yourself having to rely more on family members. I also have only just been told I have fibro after nearly 4 years of going back and forth to doctors and hospital appointments and even though I have been diagnosed its still really hard to except. Like you and most if us on here have all been where you are with all the pain the feeling of guilt family members not believing your pain and every other thing thrown in for good measure. However talking about it with people who understand and learning about the condition and asking for that help and most of all pacing yourself as well as not stressing (easier said than done) all helps. We are all here for you whenever you need us. Sending gentle hugs.
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Re: Recently (suspected) fibro.

Postby debzdrew » Tue Nov 11, 2014 7:07 pm

Hi there.... a massive thank you for your replies.... I must stress it does help knowing (it's not in my head) and other people suffer as much and sometimes more than I do.... I don't know off or have ever met anyone with this condition.... in fact up till the doctor mentioning it (5 weeks ago) I have never heard of this condition....I did go to a support group last week but I think I was still very overwhelmed by the idea and probably in shock and I did not interact to well.... I was given a lot of paperwork about this condition to read and I have done research... My GP told me NOTHING.... My husband needs to come with me to any "important" meetings/appointments as by the time I leave the meeting/appointment I have usually forgotten what has been said....All my GP said was she suspects it's Fibromyalgia and gave me some medication and a leaflet to contact a phone group for "mental support" as I am not coping.... no explanation what it is and what it does.... I have had to find this out myself. I have my next appointment on 26th this month.... so it will be interesting what my GP has to say or advices. Thank you all again for your words. Hug for you all x x x
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Re: Recently (suspected) fibro.

Postby denys » Wed Nov 12, 2014 3:36 pm

Hi and :welcome: to the forum :wave: :wave: :wave:
Denys

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Re: Recently (suspected) fibro.

Postby rick31797 » Wed Nov 12, 2014 6:59 pm

Your post really got to me, and that don't happen to me much, i think it was the way it was wrote, and how much change you went through over the 2 yr span.
I am a 58 yr old Male living in Canada, and have had this illness for 19 yrs, Started in 1996, and i had no idea what was going on like you, it took many doctors and 5 years before i heard the word Fibromyalgia.From that point i went to support groups, took many many different medications and basically mentally put myself through hell..

Today i am more content, i guess you could say i excepted this illness, but i still get bitter at times, as it just takes from you..I have my music, i play guitar, but as far as joining a band,which would be great mentally i cant do it.. i would not be dependable, so it has taken that from me along with my job many years ago..

My advice and i agree with others.. pace yourself.. but saying that, there will be many times you will overdue it.. i still have a hard time leaving something i have started., and hope for a better day to finish.. its a whole new way of surviving.

Sleep is so important, you need to get that under control, if you are having problems..I take a sleeping pill, i go to bed at the same time every night, i use a memory foam topper for my mattress. and most importantly i lay on a heating pad.. this defers the pain enough for me to fall asleep.. its a soft heat pad, so it don't get really hot.

It sounds like you have family support.. this is good, and i hope your husband understands that what he sees in front of him, will not be the same person physically,and its nobody's fault..He will need to be very understanding, but also, don't throw this illness in his face or other family members and friends, they will soon get very tired of it..

I wish you the best, its ok to grieve and cry, i have did this many times as its such a drastic life changing illness and so complicated to deal with..Some how we all need to find what works for us, to have some quality of life , Doctors don't have any answers , you will have to be the one to suggest things to try.

And i also suggest and this is important.. start a diary .. write what meds you are taking and for how long and the results.. Doctors you see , dates..and tests done.. if you don't do this , especially with medications.. you will forget what you have taken, and may repeat it, and end up going through bad side effects, that will jolt your memory into remembering that you already took this.. Also having records for having to apply for disability is a good thing . Good Luck
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Re: Recently (suspected) fibro.

Postby debzdrew » Mon Nov 17, 2014 11:54 am

Hi Denys.... thank you for my welcome. x
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Re: Recently (suspected) fibro.

Postby debzdrew » Mon Nov 17, 2014 12:39 pm

Hi Rick31797..... Thank you so much for your reply....and the good advice.... I started a diary a while ago as I am trying to make a connection between my activities and what triggers a bad day.... I count myself very lucky after reading people's posts... I find I can go 5/6 days doing well before I have 2/3 bad days..... sadly some people suffer daily with the energy levels..... I do take pain relief daily... I must say I am very headstrong...(stubborn by my husbands words ha ha ha) and I find I do keep pushing myself to complete my daily tasks.... I do take daily activities much slower and some days they can take me twice as long as normal.... sadly on my not so good days I struggle to just get up and dressed.... again I will push myself because there is only me to get my little girl to school....

My older 3 children sort themselves thankfully. As of yet I don't really see a pattern to my good/bad days ....and on my good days I hold my hands up and say Yes I over do it.... I can't help myself at the moment as it feels great to have the energy to complete my daily tasks and do a bit extra..... I know I must pace myself but this I need to learn!!!

My husband really is fantastic... he changed his hours at work so he does a split shift... works in the morning home for 2/3 hours at lunch time back to work for the afternoon/evening... this is so he can help if I have not completed my daily housework... we all have our priorities and mine for 24 years (been a mum that long wow)... is to be sure my children are healthy...happy and come home to a clean house and good meal.... My older 3 children living at home are really understanding..... I have had 6 children in all...aged from 24 oldest....4 youngest....I have 4 still living at home... it's my little 4 year old it seems to have hit the hardest.....

During holidays/weekends I always completed my housework...then I would pack a picnic and take the children to either the beach....day out...play park....and so on.... during holidays we would only stay home maybe 2 days a week for me to catch-up on washing etc.... Sadly last year I only managed to get them out about 14 days during the summer holidays.... and this year I managed an adventure week I booked for them (5 days...most of that I was sat in the car or sat while they did the activities)... outside this adventure week I managed 1 day!!! So out the whole 6 weeks holidays I did 6 days out and about....my little girl is always asking why we don't go to the play park anymore or to the beach...and why mummy needs to have a sleep some days during the day....granted it is not the weather for the beach or play park... but I always managed something.... nowadays I seem to sit...

I do still try and play with my 4 year old...colour...do crafts....but even these on some days are very difficult because my hands hurt or really weak that I can't hold a pencil... I got very upset last week.... I could not hold my knife properly and didn't have the strength in my hand to cut up my meat on my dinner....my husband asked if he could cut it up for me and I got very angry...not at my husband but more at myself... I felt so useless... sadly I feel like this a lot lately... I just can't seem to get my head around this....I've gone from a happy...healthy...bouncy...full of energy person.... to a miserable do nothing ...sat staring out of a window...grouchy cow!!! It doesn't make sense! x
Last edited by FluppyPuffy on Tue Nov 18, 2014 3:36 pm, edited 1 time in total.
Reason: Split larger paragraph into smaller ones for easier reading.
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Re: Recently (suspected) fibro.

Postby debzdrew » Tue Nov 18, 2014 1:06 pm

Patsb wrote:I feel for you.after numerous tests. I was told by a rheumatologist that the " only thing he could put my symptoms down too was fibromyalgia "
I have tried numerous medicines and pills to no avail.im now just taking 10 mg amyltriptyline nightly co codamol for pain Valium 5 mg ( gp won't up dose so I ration them and take 2 at once when I'm desperate) antacid tablets and suppositories for constipation which I buy myself.
I stopped going to the surgery over a year ago as I felt I was wasting my time.im in constant pain and havnt left home for 12 months.
I hope you have more success than I have in getting help and pain relief. :flowers:
"""""" I am so very sorry you are having such a hard time... I do find very few doctors are sympathetic or helpful....Maybe a change of GP? ....My heart aches for you... You really are suffering... I find it hard enough when sometimes I only get out once a fortnight.... I do find I sometimes I just sit in the garden regardless of the weather.... just for fresh air and open space.... xxxx I wish I could advice and help you....sadly I'm new to this so I don't know how to help x x x x Lots and lots of hugs x x x
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Re: Recently (suspected) fibro.

Postby debzdrew » Tue Nov 18, 2014 3:06 pm

taracidre wrote:Hello
Its always hard to suddenly have to stop something you have always done without thinking about it or to find yourself having to rely more on family members. I also have only just been told I have fibro after nearly 4 years of going back and forth to doctors and hospital appointments and even though I have been diagnosed its still really hard to except. Like you and most if us on here have all been where you are with all the pain the feeling of guilt family members not believing your pain and every other thing thrown in for good measure. However talking about it with people who understand and learning about the condition and asking for that help and most of all pacing yourself as well as not stressing (easier said than done) all helps. We are all here for you whenever you need us. Sending gentle hugs.
""""Thank you for your advice... I am trying to pace but when I feel good it's hard to sit still.... I have always been very very active so it's a hard habit to break.... stressing...yes definitely easier said than done.... it's the lack of energy that stresses me ha ha ha..... thank you again for some valuable advice..x.x.x. Lots of hugs x x x
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Re: Recently (suspected) fibro.

Postby debzdrew » Tue Nov 18, 2014 3:11 pm

Helhit wrote:Hi Debz

I think that everyone on this forum will say that we have found it really difficult to come to terms with fibro - and actually still am

You're going through the stages of grief for what you once were and what you are now. It will take time, but you will feel better about how you and your life is now.

Look up pacing and meditation (including body scan), as these are the best coping mechanisms I've found.

Once you've mastered pacing, life becomes easier to manage.

Also cognitive behavioural therapy worked wonders for me. Your doctor could refer you for that.

Any time you have a question or just want to talk , use us. The beauty of this illness is that there'll always be someone awake cos we're all such awful sleepers.
"""" Thank you for the heads-up advice...it's good to know things will improve...meditation mmmmmm I think I will definitely look at that one.... I can't believe how life changing this has been....may have been over a period of two years plus but it is still a shock.... I wake each morning with the same thought"has it gone!".....strange eh.... I think it is just going to go away like a bad cold.... need to accept it won't..... thank you for your help x x x x hugs and hugs x x x
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Re: Recently (suspected) fibro.

Postby FluppyPuffy » Tue Nov 18, 2014 4:23 pm

:welcome: to our little sanctuary debz :cow-wave: :cow-wave: :cow-wave:

I've split your posts into smaller paragraphs to make them a little easier to read. One of the delights FM bestows upon some of us, incl myself, is problems when it comes to reading larger blocks of text. We get part way thru it then end up getting lost and reading the same bit over and over again.

You need to give yourself time to get used to living life with FM. If you can give things a little time to settle down, then you may find that life does start making a little sense again. It's something that can't be hurried unfortunately, it needs the time that it needs. If you try to take short cuts, it tends to come back with even bigger teeth and bites you in the backside whilst at the same time kicking you there as well.

Most of us start off by taking things day~by~day, even hour~by~hour or minute~by~minute if needed. You can also apply taking things bit~by~bit to housework and other domestic goddessings you need to do. Splitting a task down into smaller segments, doing a bit, then having a rest, then doing the next bit can make it easier to complete. This is the basis of pacing, and is what keeps some of us bobbling along thru each day.

Wrt your youngest girlie, she is just a little bit older than what my son was when things started appearing for me. At first I tried to carry on as I was preFM, but this was only possible for a very short period of time. Without realising, I'd backed myself into a corner where change was the only way to get out of it. And the only way to do that was to work within what my capabilities and limits were at the time.

I'd set aside some time during each day, no matter how awful I was feeling, that was just for me and him. We'd set ourselves up in a base, and he chose a number of toys and activities that we could do. Some involved more interaction and involvement than others, so we'd start off with one of these, do it for a set period of time, and then, depending on how I was feeling, the next one might only involve half the amount of the first one. We'd go thru things like this, each activity needing a little less thinking about than the previous one, so we were still doing things and having fun together, which were designed not to take too much out of me whilst keeping him focussed and entertained, for some of the time at least.

When I was getting near to my limits, we had a code word that I was supposed to say so that he knew it was time to do something a little more gentle as I wasn't able to manage what we had been doing previously. It didn't work every time, but when it did, the difference it made was most welcome. What your little girlie will remember is what she did with you rather than how long you were doing it for {quality over quantity.} If you can find the balance for this, it could all help with one little girlie growing up into a well rounded and balanced person.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Recently (suspected) fibro.

Postby debzdrew » Tue Nov 18, 2014 4:55 pm

FluppyPuffy wrote::welcome: to our little sanctuary debz :cow-wave: :cow-wave: :cow-wave:

I've split your posts into smaller paragraphs to make them a little easier to read. One of the delights FM bestows upon some of us, incl myself, is problems when it comes to reading larger blocks of text. We get part way thru it then end up getting lost and reading the same bit over and over again.

You need to give yourself time to get used to living life with FM. If you can give things a little time to settle down, then you may find that life does start making a little sense again. It's something that can't be hurried unfortunately, it needs the time that it needs. If you try to take short cuts, it tends to come back with even bigger teeth and bites you in the backside whilst at the same time kicking you there as well.

Most of us start off by taking things day~by~day, even hour~by~hour or minute~by~minute if needed. You can also apply taking things bit~by~bit to housework and other domestic goddessings you need to do. Splitting a task down into smaller segments, doing a bit, then having a rest, then doing the next bit can make it easier to complete. This is the basis of pacing, and is what keeps some of us bobbling along thru each day.

Wrt your youngest girlie, she is just a little bit older than what my son was when things started appearing for me. At first I tried to carry on as I was preFM, but this was only possible for a very short period of time. Without realising, I'd backed myself into a corner where change was the only way to get out of it. And the only way to do that was to work within what my capabilities and limits were at the time.

I'd set aside some time during each day, no matter how awful I was feeling, that was just for me and him. We'd set ourselves up in a base, and he chose a number of toys and activities that we could do. Some involved more interaction and involvement than others, so we'd start off with one of these, do it for a set period of time, and then, depending on how I was feeling, the next one might only involve half the amount of the first one. We'd go thru things like this, each activity needing a little less thinking about than the previous one, so we were still doing things and having fun together, which were designed not to take too much out of me whilst keeping him focussed and entertained, for some of the time at least.

When I was getting near to my limits, we had a code word that I was supposed to say so that he knew it was time to do something a little more gentle as I wasn't able to manage what we had been doing previously. It didn't work every time, but when it did, the difference it made was most welcome. What your little girlie will remember is what she did with you rather than how long you were doing it for {quality over quantity.} If you can find the balance for this, it could all help with one little girlie growing up into a well rounded and balanced person.


"""" thank you so much for splitting my post.... sometimes I forget to hit the return key.... yes I also struggle to read long paragraphs as I also read the same piece over and over.... I did giggle about it....it reminded me of a very good friend who would read my letter I had posted to her and she would send it back with all the spelling mistakes marked in red....you cheered up my day by bringing that memory forward...

I like your idea regarding my little girl....yes I will definitely try that.... I know it's time and planning to get grips with this... but some days there seems no light at the end of the tunnel.... it is very early days for me and I am still trying to get my head round "this is what I have" let alone how to deal with it....I am very thankful for people like yourself..... at least I don't feel alone with this ..... thank you x x x hugs x x x
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Re: Recently (suspected) fibro.

Postby FluppyPuffy » Tue Nov 18, 2014 6:11 pm

Glad there was something in my wafflings that helped perk you up :-D :-D :-D :-D

What I did with the setting times for what we were doing something when my son was ickle came from something that was originally intended to help with concentration in little peoples, the basis of it appealed as I find structure and order helps me keep going, for most of the time anyway.

You'll find your way thru this stage Debz. It will probably be a bit bumpy along the way, and you'll find yourself trying a number of things before you land on what suits you. Try not to let it faze you when/if it does happen. Instead, take a little time out for things to settle back down, have a look at how things went and what you could do instead, then give it another go. Things do become lighter and brighter again, and along the way you may discover some little gems that you might not have considered preFM.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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