mums or mums to be with cfs/m.e

[sophxx]

Sorry to hear you having a relapse I'm having a flare up with pain in my shoulders and upper chest/ breast bone it's horrid seems to be linked to the weather

Does anyone else suffer with pain in there shoulders or collar bone area? X

 

[misslissa]

Sorry to hear you having a relapse I'm having a flare up with pain in my shoulders and upper chest/ breast bone it's horrid seems to be linked to the weather

Does anyone else suffer with pain in there shoulders or collar bone area? X

I get neck, shoulders and lower back pain. Also get headaches, nausea, chest pain, palpitations.

Do you or others suffer with anxiety/depression - I know they impact on me a lot.

 

[sophxx]

Sorry to hear you having a relapse I'm having a flare up with pain in my shoulders and upper chest/ breast bone it's horrid seems to be linked to the weather

Does anyone else suffer with pain in there shoulders or collar bone area? X

I get neck, shoulders and lower back pain. Also get headaches, nausea, chest pain, palpitations.

Do you or others suffer with anxiety/depression - I know they impact on me a lot.

Yeh I get bad anxiety what do you find helps mines been qcheing since fri and it's kind of annoying doesn't help that I then get more anxious even though I've been the doctors about it loads so know what it is


Does anyone find there symptoms improve when the weathers warm? X

 

[misslissa]

Sorry to hear you having a relapse I'm having a flare up with pain in my shoulders and upper chest/ breast bone it's horrid seems to be linked to the weather

Does anyone else suffer with pain in there shoulders or collar bone area? X

I get neck, shoulders and lower back pain. Also get headaches, nausea, chest pain, palpitations.

Do you or others suffer with anxiety/depression - I know they impact on me a lot.[/QUOTE]

Yeh I get bad anxiety what do you find helps mines been qcheing since fri and
it's kind of annoying doesn't help that I then get more anxious even though
I've been the doctors about it loads so know what it is

I would say try and take some time out to rest. I know I become exhausted when I'm stressed and depressed. I know it's easier said than done, I am fighting to get into work but deep down I know a couple of days in bed would put me right. I don't know about you but does everything spiral out of control when you feel like this?

Has the doc given you any medication? If you agree with what's wrong get something to help you.


Does anyone find there symptoms improve when the weathers warm? X[/QUOTE]

 

[JessJC]

Been really tired lately, its a sruggle to get through the day.
How do you all cope with the demands of the housework? My oh doesnt 'do' housework really and with 2 kids is very overwhelming

 

[sophxx]

its hard to keep on top of the house work my oh doesnt do it either

i usually put a wash on 1st thing and when i go to the bathroom i throw another lot down with it
i iron everything as soon as it comes outof the dryer or off the line so its not left around

the bath room i put toilet cleaner down it when i last go to the toilet at night then flush and clean in the morning
i also use that spray on foam for the bath you spray it on leave for a few hours or over nioght then just rinse off so i do that last thing before bed

we bought a dyson hand vaccum which is fab for when your not feeling well but the kids have put stuff on the carpet

if my house is a mess and im not well i just leave it thouigh lol
x

 

[Angel806]

Hello I'd like to join here if possible please?

How are we all? Gentle hugs to all x

 

[sophxx]

Hi

Im good thank you how are you? X

 

[Angel806]

It seems, getting worse Didn't know how that was possible but seems it's so possible.
How are you? x

 

[sophxx]

Aww I'm sorry could it just be a temporary set back? Have you been to the local m.e clinic? I'm ok just really tired my oh is in hospital at the mo x

 

[Tinkerbellxxx]

Hello ladies! I'm hopping over from the third tri after being invited by Soph :wave:

I have had CFS since I was 15 years old, been in remission for many years, but suffered a massive relapse in May last year and had to give up work. I began to recover gradually, and fell pregnant in October last year. I'm 35 weeks pregnant and really quite worried as to how I'll cope after the baby, finding it difficult now! I have 4 children aged 12, 10, 8 and 7 x

 

[sophxx]

Hi

Not long till your due have you got everything ready? I've had m.e since I was 15 to after having glandular fever I'm really struggling with pain at the mo in my back shoulders and breast bone so off back to the gp tomorrow they'll be sick if me lol x

 

[Tinkerbellxxx]

What do you take for the pain Soph? I also have back problems, so I take Co-codamol when things get too much, and am on amitriptyline which Initially made CFS symptoms worse. I believe it has helped a great deal with the pain though, I no longer have the wide spread pain and soreness I had before (you know, that flu type soreness)

I am all ready for baby now, all that's left is a few jobs for DH to finish getting her nursery ready which he is doing as we speak. I wanted to be organised early not knowing what might happen with my health. As it was, my SPD which I also have, ha became so severe I am now completely house bound. So I'm glad its all done! I ordered the last things online.

Now I wonder how things will be during labour, and after the birth. How did you guys cope with labour? I have been quite well during pregnancy to be honest, had some bad days but nothing as awful as how I was last year. I wonder if the pregnancy hormones keep CFS in remission? what has been your experience?

Soph, really hope you get on well with your doctor tomorrow. Do you see a CFS specialist at all? x

 

[Mabelpye]

Hi

I have M.E/CFS and Fibro. I was diagnosed with M.E in Augustish 2010, and Fibro Jan 2011, and found out I was pregnant Jan 2011. I am currently on Amitryptiline so I can actually get to sleep, even if it's only for an hour or so, or else I don't sleep. I was supposed to be going onto Tramadol to help with the severe fibro pains, but obv couldn't as I found out I was pregnant a few days later. I was on 60mg Co-codamol 4 times a day, but that didn't do much at all. I've been told that I can take it during pregnancy, but tbh, I really don;t see the point if it does nothing for me anyway, I was supposed to be going onto some other tablets (bad brain fog day, can't remember for the life of me what they're called lol).

I am on crutches all the time at the min, and a wheelchair for going out. My husband is my carer who works full time, bless him. I was working full time, but I am now on long term sick leave (approx a year and a half). I tried slow integration back into work, but it just made things so much worse that I had to stop

I'm 20, and judging by how long I've been having problems, they're pretty certain that I started with both M.E and fibro when I was 15, and basically between a combo of my stubbornness to just get on with things, and doctors wrong diagnosis of Vertigo and depression (who also told me to just get on with it), made things a million times worse, until I had a major crash.

xxxx

 

[sophxx]

ive just been given Amitryptiline today and started taking them finger crossed they help as i feel washed out and horrid today. did they make you feel alot worse before you got better? does any one else suffer with adrenal fatigue the gp thinks i might have it. i have constant adrenaline rushes which can be related to fibro there really horrid. im having a really bad day today i felt really really well during my pregnancey and then after labour i really went down hill really quickly i was so tired i could hardly walk.

ive seen the speaclist when i was 1st diganosed but theres only one in our area so you just get one appionment ive been on the m.e course to where you do pacing pain managment relaxation ect but its hard to pace with a one year old

do you see any speaclist?

 

[sophxx]

Hi

I have M.E/CFS and Fibro. I was diagnosed with M.E in Augustish 2010, and Fibro Jan 2011, and found out I was pregnant Jan 2011. I am currently on Amitryptiline so I can actually get to sleep, even if it's only for an hour or so, or else I don't sleep. I was supposed to be going onto Tramadol to help with the severe fibro pains, but obv couldn't as I found out I was pregnant a few days later. I was on 60mg Co-codamol 4 times a day, but that didn't do much at all. I've been told that I can take it during pregnancy, but tbh, I really don;t see the point if it does nothing for me anyway, I was supposed to be going onto some other tablets (bad brain fog day, can't remember for the life of me what they're called lol).

I am on crutches all the time at the min, and a wheelchair for going out. My husband is my carer who works full time, bless him. I was working full time, but I am now on long term sick leave (approx a year and a half). I tried slow integration back into work, but it just made things so much worse that I had to stop

I'm 20, and judging by how long I've been having problems, they're pretty certain that I started with both M.E and fibro when I was 15, and basically between a combo of my stubbornness to just get on with things, and doctors wrong diagnosis of Vertigo and depression (who also told me to just get on with it), made things a million times worse, until I had a major crash.

xxxx

sorry to hear youve been ill for so long

do you find your cruches help you? how did you get them did the physio give them you? mine just gives me excercises but im trying to get wrist splints to help my carpal tunnel syndrome

do any of you ever feel your heart beat stronger when you stand up? mine beats stronger but doesnt skip beats the cardioligst says its nirmal if it didnt id faint but i hate worrying about it i have bad anixety related to my heart x

 

[Mabelpye]

Hi

I have M.E/CFS and Fibro. I was diagnosed with M.E in Augustish 2010, and Fibro Jan 2011, and found out I was pregnant Jan 2011. I am currently on Amitryptiline so I can actually get to sleep, even if it's only for an hour or so, or else I don't sleep. I was supposed to be going onto Tramadol to help with the severe fibro pains, but obv couldn't as I found out I was pregnant a few days later. I was on 60mg Co-codamol 4 times a day, but that didn't do much at all. I've been told that I can take it during pregnancy, but tbh, I really don;t see the point if it does nothing for me anyway, I was supposed to be going onto some other tablets (bad brain fog day, can't remember for the life of me what they're called lol).

I am on crutches all the time at the min, and a wheelchair for going out. My husband is my carer who works full time, bless him. I was working full time, but I am now on long term sick leave (approx a year and a half). I tried slow integration back into work, but it just made things so much worse that I had to stop

I'm 20, and judging by how long I've been having problems, they're pretty certain that I started with both M.E and fibro when I was 15, and basically between a combo of my stubbornness to just get on with things, and doctors wrong diagnosis of Vertigo and depression (who also told me to just get on with it), made things a million times worse, until I had a major crash.

xxxx

sorry to hear youve been ill for so long

do you find your cruches help you? how did you get them did the physio give them you? mine just gives me excercises but im trying to get wrist splints to help my carpal tunnel syndrome

do any of you ever feel your heart beat stronger when you stand up? mine beats stronger but doesnt skip beats the cardioligst says its nirmal if it didnt id faint but i hate worrying about it i have bad anixety related to my heart x

because a lot of my pain is in my lower back and hips, and I also get a lot of weakness there too, so my legs often give way from under me, they do help with that, because it's extra support for me, so I'm not collapsing all the time.

My God mum is a nurse, who happened to have a decent pair of crutches at home, so she gave them to me to use, but my midwife, doc etc are happy with me using them because it's either that or a wheelchair permanently. I've alway had pains in my wrists and arms, and using crutches does make that worse but it's the lesser of two evils. I'm not guna collapse and risk harming beanie if my wrists hurt lol.

I'm not under the physio because my specialist doesn't believe it would help me. Because of how bad the M.E is, anything like that, that would help with the fibro, would then lead on to make the M.E worse. I'm under a specialist occupational therapist, who will work with me more after beanie is here, working with more advanced pacing, CBT etc. The problem is, because I found out I was pregnant so soon after seeing the specialist, I've not been able to take the tablets they want me on, to then lead onto everything else they want to try lol.

I've only noticed my heart beating stronger since being pregnant, I can't say I was paying attention to it to much before lol.

I've only seen the specialist the once so far, but if I have any problems etc I can call him up instead of having to actually go in and see him.

xxx

 

[BattyNora]

Hello everyone

It's nice to know a group like this exists....and that there are others around!

A little background...

I'm Emma, 21 and currently 34 weeks pregnant with my first. I had problems with extremely painful joints (mainly hips) and fatigue for a few years and after almost undergoing major hip surgery(!) was diagnosed in August 2009 with Ehlers Danlos Syndrome, Hypermobility type which is a connective tissue disorder basically meaning I'm extra bendy and my joints don't hold together properly, which can lead to lots of pain, subluxtions and dislocations. One of the symptoms of this is fatigue but after having to take around 5 months off work, and the fatigue becoming my main symptom I went through a few months of testing and in Jan 2010 they diagnosed me with ME/CFS.

It's been weird...at that diagnosis I was given a leaflet (on Fibro...not even ME!) and that was it really. I would go to my GP when trying to get back to work, and he would tell me to just keep going and that's all I can do.

I was put on amytriptaline in August 2009 for the EDS but in the nicest possible way it made me absolutely mental! I didn't get any more sleep and was not healthy for me or anyone around me, so I was taken off of those. I was also given Naproxen (anti-inflams) and solpadol for the pain but they didn't even touch it if I'm honest. I had to come off of them when I found out I was pregnant and since then I've been cut and dry.

I did recover somewhat over the past year...with only minor relapses since my wedding in July. I kind of went the opposite way and tried not to let myself stop, no matter how hard I was finding it all because when I did I "gave into" it. I had to quit work last July though because I couldn't cope with 9-5 in an office, and have been working from home. But I've been struggling...I can't see past the fog a lot of the time to get anything done.

I was feeling good in this pregnancy, and even my hips were holding out somewhat...but the last two weeks I've completely fallen apart again. I cannot explain the agony I feel with my hips when they flare up and it's like they know when my ME is getting bad and like to join in. I've been struggling with the normal flu-like joint pains everywhere else and I just feel like, at the moment, that I'm succumbing to it all. I've worked so hard the past two years to make sure I didn't let it beat me, and now I feel like it's won again.

Sorry for the ramble...I'm just worried how I'll cope with rest of the pregnancy, and once babs is here. Especially since I get no support from my GP....it feels like they have the "it's not a real thing" attitude.

 

[chelleyve]

Hi All,

I hope you don't mind me popping in, I'm Michelle and have ME/CFS, I was diagnosed properly about four years ago, when I ended up quiting my job in retail management, but it's believed to have been present since I was in my late teens.

I just wanted to say what a fab idea this post is and wish there had been one early in my pregnancy when I was really worried that pregnancy would cause a relapse! Personally it has had the opposite effect and I didn't need my medication , but PP I am beginning to feel the signs again, so I am hoping this thread will provide support on coping mechanisms everyone uses!

x

P.S. Should say that although I quit retail, I currently work in complex paediatric health... longer shifts but different stress and more down time between them!

 

[Lynda09]

Hi everyone im glad i found this group im 28 and have had CFS for about 7 years ive recently given birth to my first child a wonderful little boy called Oliver. I just wondered how you all cope im just running on adrenaline will it all catch up with me I havent got a choice but to keep going as my partners gone back to work today. Does anyone have any tips I would love to know how you all are feeling physically and cope with being a parent.

Thanks

Lynda