mums or mums to be with cfs/m.e

[sophxx]

is there any mums or mums to be with cfs/m.e im haveing a rough week this week after my los birthday party and just thought it would be nice to have a surpport group x

 

[MoonLove]

Hello!
I've suffered with CFS for several years now. Had problems back in 2009, saw so many doctors and they all fobbed me off completely, until i finally saw one who sat and talked with me for a whole hour about CFS and what it was.

I love the idea of a support group

 

[sophxx]

hi

i know theres a few other mums on here with cfs but i dont think they all use the groups but hopefull more people will join

i thought we could share tips i was really badly affected after having lo so found lots of useful things to help me rest

im sophie im 23 ive been ill on and off since i was 16 i have a little boy whos one x

 

[misslissa]

I've had CFS diagnosed for about a year. I'm TTC my first and hoping I can cope when it happens. I've put it off for ages and not willing to wait any longer. I struggle but I'm getting a bit better. I think the best thing is being aware of our triggers and trying to prevent bad bouts if possible.

 

[mummyx2]

Hi

Thanks for giving me this link in my post in Health and Wellbeing, i pretty much told you my story in there.

Being a full time mum is difficult enough, but I think us mums with Fibro/CFS etc can be affected worse.

I was only diagnosed a year ago, but I am pretty sure I have been suffereing for many years.

xxx

 

[sophxx]

hi

glad you both joined ive had cfs since i was 16 but been in and out of remission alot when i was pregnant i felt amazing but after i really struggled my lo is one now and im picking up alittle now

do any of you have any treatment for your m.e? x

 

[mummyx2]

I dont have treatment for my M.E because it's not bad enough apparently, but I do have painkillers for the Fibro, I have tried physio and I have access to the local hydrotherapy pool, but I cant use that during pregnancy

 

[sophxx]

aww thats rubbish hun, could you not push to go to the local m.e clinic it would really help while pregant? we pay for private treatment for mine and i have accupuncture for fibro pain as well as magnesium oil i do take pain killers but only as a last resort

wheres your fibro pain the worst mine is my shoulders and collar bone at the mo which isnt helped because im carrying lo all the time and hes a big boy x

 

[mummyx2]

I have an appointment with my doc on Monday, so will ask about any clinics.

I attend a support group once a month for CFS and Fibro sufferers which is fab, its shown me there are alot of others local with the same problems I have.

My fibro pain is bad in my hips and knees at the mo, tho my wrists get bad too, Im only 17 weeks pregnant and Im already huge, so I got a feeling the pain is going to get worse.

Are you on Facebook? There is a really good page called the Spoon Theory, sometimes I have difficulty explaining how the CFS and Fibro affect me, and my daily life, the spoon theory gives an alternative explaination.

xxx

 

[misslissa]

hi

do any of you have any treatment for your m.e? x

I was referred to hospital by my doctor in December after about 9 months of going in and out of the docs, I initially was diagnosed with post viral fatigue after I had had so many infections (ears, chest, coldsores) and general exhaustion. I was diagnosed with anxiety at that stage too and they said that was due to being so low feeling ill that I had become anxious about my health. I think they were spot on. I am just coming off anti anxiety medication now after about a year. I also suffer with depression, to be honest I've had this on and off for years but when I am ill I tend to relapse mentally as well as physically.

Anyway, my doc referred me to hospital I am now under the supervision of a team called the 'enablement' team. So far I have regular (monthly) apps with the person overseeing my treatment, I've seen a dietician, I'm on an 8 week course with a physiotherapist doing pilates to try and gain my strength back and I see a counsellor every week.

I have been really impressed with what I have been offered, I feel as though my condidtion is taken seriously. My 'team' are aware that I am TTC and they are incredibly supportive and said I will get support throughout my pregnancy.

I also have been having accupuncture for about 6 months which I do privately, I think it helps but then how do you ever really know?

All I can say is for anyone suffering, keep going to your docs and push. I had to go through a lot of blood tests etc before I got my diagnosis but that was fine. Actually at one point I wished something had come back on them just so I could be 'cured' but I'm really glad nothing did now. This is something that I will elarn to deal with. Its hard, won't deny that and sometimes I feel like a 'lazy' so and so because I don't have the energy to do things I want to do. I know deep down I'm not but seeing as I'm only 30 its hard being so exhausted after 40mins of pilates! A few years ago I was running and gym'ing, I was strong and didn't appreciate it. Now I strive to get there again.

I know alot of my illness was brought on by excessive stress, my body reacted as well as my head. Now I take that very seriously, I don't feel ashamed for getting worked up and I don't let my health suffer by lettign work stress me out. My health comes first, not some office job that I don't care about.

Anyway, I do worry a lot about coping during and after pregnancy. Its scares me a lot really but I can't put my life on hold any longer so all I can do is go into with my eyes open....

 

[taperjeangirl]

Hiya everyone

I'm Andrea, I'm 33 and have just been diagnosed with Fibromyalgia, I hope it's ok to be in here too?

I now understand why I've been in so much pain all these years but I am struggling to come to terms with it now it has an actual name (i know it should make me feel better!)

My pain started when I was about 25, maybe younger as it all sort of blends!

I was ok-ish through pregnancy with Daisy (aged 2.5) But I was working 12 hour shifts on my feet and I remember suffering badly with sore legs and swollen feet but I just put that down to pregnancy!

I am a stay at home Mum atm, and I am dreading going back to work as I honestly don't think I will be able to cope, my pain is now in my back and legs mostly and a day out shopping takes me days to recover from so I don't know if I will be able to work

It goes both ways though, if I sit too long I get achy too, so god know what sort of work I'll be able to do.

The tiredness is a killer too, I can sleep right through all night and after an hour awake in the morning I could sleep again and if I gave in to it I know I'd sleep through most of the day, but of course a toddler doesn't allow that!

I have been offered strong painkillers which up to now I have refused, I was referred today for physio and my Doctor thinks he has found a specialist to take on my case, but he said he has a long list of people waiting for his help so I wont hold out much hope that I will see him anytime soon

I would love some tips and advice on how best to get through the day, how do you all get your cleaning done without having to lie down after?!

Simple things like this are frustrating me the most xxx

 

[mummyx2]

Hiya everyone

I'm Andrea, I'm 33 and have just been diagnosed with Fibromyalgia, I hope it's ok to be in here too?

I now understand why I've been in so much pain all these years but I am struggling to come to terms with it now it has an actual name (i know it should make me feel better!)

My pain started when I was about 25, maybe younger as it all sort of blends!

I was ok-ish through pregnancy with Daisy (aged 2.5) But I was working 12 hour shifts on my feet and I remember suffering badly with sore legs and swollen feet but I just put that down to pregnancy!

I am a stay at home Mum atm, and I am dreading going back to work as I honestly don't think I will be able to cope, my pain is now in my back and legs mostly and a day out shopping takes me days to recover from so I don't know if I will be able to work

It goes both ways though, if I sit too long I get achy too, so god know what sort of work I'll be able to do.

The tiredness is a killer too, I can sleep right through all night and after an hour awake in the morning I could sleep again and if I gave in to it I know I'd sleep through most of the day, but of course a toddler doesn't allow that!

I have been offered strong painkillers which up to now I have refused, I was referred today for physio and my Doctor thinks he has found a specialist to take on my case, but he said he has a long list of people waiting for his help so I wont hold out much hope that I will see him anytime soon

I would love some tips and advice on how best to get through the day, how do you all get your cleaning done without having to lie down after?!

Simple things like this are frustrating me the most xxx

Hi

I have got Fibromyaligia too, it can be a nightmare, I have a 2 year old and a 5 year old and a baby due in September, so no sleeping during day here either

The only professional help I have managed to acquire is my GP, he has turned out to be very knowledgeble about FMS

As for the painkillers I have taken them because on top of the FMS theres also M.E. It is worth considering the painkillers but just taking the minimum dosage, maybe accupuncture too, also is there a hydrotherapy pool at your local hospital? Try googling hydrotherapy in your local area.

As for tips on getting through your day, little and often, I might do an hours stint, and then sit down for a couple of hours, and if you do a little every day there is never that much too do. Any help you can get with your LO take it, and do not feel guilty for not being able to do things.

xxx

 

[sophxx]

Hiya everyone

I'm Andrea, I'm 33 and have just been diagnosed with Fibromyalgia, I hope it's ok to be in here too?

I now understand why I've been in so much pain all these years but I am struggling to come to terms with it now it has an actual name (i know it should make me feel better!)

My pain started when I was about 25, maybe younger as it all sort of blends!

I was ok-ish through pregnancy with Daisy (aged 2.5) But I was working 12 hour shifts on my feet and I remember suffering badly with sore legs and swollen feet but I just put that down to pregnancy!

I am a stay at home Mum atm, and I am dreading going back to work as I honestly don't think I will be able to cope, my pain is now in my back and legs mostly and a day out shopping takes me days to recover from so I don't know if I will be able to work

It goes both ways though, if I sit too long I get achy too, so god know what sort of work I'll be able to do.

The tiredness is a killer too, I can sleep right through all night and after an hour awake in the morning I could sleep again and if I gave in to it I know I'd sleep through most of the day, but of course a toddler doesn't allow that!

I have been offered strong painkillers which up to now I have refused, I was referred today for physio and my Doctor thinks he has found a specialist to take on my case, but he said he has a long list of people waiting for his help so I wont hold out much hope that I will see him anytime soon

I would love some tips and advice on how best to get through the day, how do you all get your cleaning done without having to lie down after?!

Simple things like this are frustrating me the most xxx

hi of course it is hun theres me and a few others who have fibro to

i know theres a speaclist in our area dor fibro and chronic fatigue you only get one appionment and hes about a year wait so hope yours is less

accupunctire really helps me you can get ot through the pain clinic if you have one?

also im not sure on your situation but have you claimed disablitilty living allowance? you will be able to but you need to make sure you fill the form in about the absuoltley worse day youve ever had how bad the pain was ect not what itslike now youve started your pain killers as its quite hard to get,your def entitled to it so worth a try as well as i think its esa ( is thats what replaces incapicty)?

i find my pain is aloyt worse in the winter and when its damp the warm weather really helps me xx

 

[sophxx]

for got to answer the tips

pacing its the best thing you can learn ive got some info some where about how to do it theat i got from the chronic fatigue center i could send you they will be lots of books in the libary to

another good thing is to keep a dairy for a week of what ypou have done and see when your doing to much and when you symptoms are worse

if your intrested in trying natural things to help theres quite alot of things that are worth a try i could add some links iof you are x

 

[JessJC]

Hi, i have ME too, can i join?
Im Jess, 24, i got diagnosed when i was 12 but the symptoms started about 2 years before.
I have two kids. Jack was 3 in Dec and Casey was 1 last month.

I like the idea of a support group. I did but a post in the health section a while ago asking if anyone had ME but didnt get any replies. xx

 

[summer rain]

I have CFS, was diagnosed in my teens but told it was down to 'growing pains' and I'd probably grow out of it. I couldn't do my GCSEs and I got a scholarship to a private school to do them and I couldn't do them there either because I just couldn't cope with the travel and ended up having to sleep immediately upon getting home. My previous GP here was very dismissive and blamed it all on my weight; she simply didn't believe that when I first started off with this I was as skinny as anything. Thankfully its a lot better these days; most days I don't even need to nap during the day and I can do moderate exercise without wearing myself out for a week. xx

 

[misslissa]

Hi all, I think any tips or therapies others find useful would be great to post on here as it can feel really lonely having CFS or fibromyalgia.

From what I have read and been told so far it is all about pacing. Also the mention of keeping a diary is really good idea - I've been told to learn the triggers so I can avoid them or look after myself extra well before, during and after. One good idea was online shopping - really helps me. It's not just the fact that I find it tiring it's as much that CFS has made me very anxious and I get quite get up doing a big shop. Sounds daft but it does so as I can easily change it why not.

 

[sophxx]

Hi, i have ME too, can i join?
Im Jess, 24, i got diagnosed when i was 12 but the symptoms started about 2 years before.
I have two kids. Jack was 3 in Dec and Casey was 1 last month.

I like the idea of a support group. I did but a post in the health section a while ago asking if anyone had ME but didnt get any replies. xx

hi

come and join us hopefully the gropu will get bigger

how do you find having two los with your m.e?

xx

 

[JessJC]

Hi, i have been very lucky since having my second and have only been really poorly twice.
I do struggle alot with the workload of being a mother, housewife and a wife so i will do the essentials in the house and leave the rest for another day. I prefer to spend quality time with the kids then ware myself out doing housework.

How does everyone else cope?

 

[misslissa]

I'm having a bit of a relapse today, feel very tired and very depressed. I'm going into work late which is stressing me but tbh the fact I'm even getting there is a miracle. I want to be in bed.