M.E. CHRONIC FATIGUE SYNDROME PARENTS

[lonewolf]

ARE THER IN ANY PARENTS OUT THERE WITH M.E. OR FIBROMYALGIA.

Hi all, I'm just here to have a rant!
I hurt, I cant do very much at all and it's driving me insane. My brain is trapped!

Arg!!!!

I've worked out that the less I sleep, the better I feel. It's very odd. Painkillers for the pain though, I have not mastered this yet.

I hope you are all well.
Avenanap.

Has anyone tried Provigil for CFS? It's used by the US army to keep their squaddies awake, and also for narcolepsy. Apparently it can be used for CFS, ME etc.

Doc is not keen on it because of side effects (fair enough!)

I am desperate...]

Any other meds you can take for it?

Hi everyone,
I was wondering how everyone was doing?

Coro

hi, i have fibromyalgia and CFS and i have a 16 month old son. He's such a good wee boy. He goes to bed at 10pm and then comes into bed with me at 7am when dh goes to work and then he sleeps till lunchtime. However i am in pain all the time and need tramadol every day and sometimes dihydrocodeine or morphine.

Anyway hope everyone had a great christmas and have a good new year today

Hi everyone, happy new year!

Found this thread recently and just popping in to say hi - I don't come on MN very often - I have fibro and have a 6 mth old and 2.5 yr old.
I had got better, but has come back with vengeance since dd2 was born!!
Am trying to hold on to the ' this too shall pass' school of thought...I did get better before..!

Don't mean to hijack your thread but someone asked about provigil - I have Multiple Sclerosis and suffer from immense fatigue - I've been on provigil for about six months. It does work wonders for me but while it keeps you awake it is a 'fake' kind of energy - not jittery like caffeine but you do need to rest as well. While physically I can overdo it - you always pay - my MS symptoms resurface when I've done too much. As my toddler gets bigger and more active it means I can have a life. Side effects to begin with are weird (you'll be cleaning like flylady for a week) then it settles down. I only take half a dose and have a break every so often as it seems to stop working after a while. Very hard to get on the NHS and must be treated with caution as it feels quite hardcore. Do mail me if you have any questions...

Hi everyone,

Have only just joined MN, and was am ve3ry glad to find such a long running thread
I have had CFS for most of my adult life, cant remember when I didnt feel like this, then according to the doc, developed fibro after my dd was born 5 years ago. The specialist I am currently seing isnt sure i have fibro, as my ESR levels in my blood are abnormally high, but everything else is def fibro, - the neverending painful joints, the fog, the fatigue, the total feeling of inadequacy, and overall, as i am on longterm sick leave from work, the suspicious looks from a lot of ignorant mums at the school gate. Not sure if anyone else gets this. I drive to school on my good days as the walk is just too much even on my good days too, and this also doesnt earn me any brownie points .... How do you all cope with this area?.......I am lucky to have a very supportive mum and dad, and a couple of patient friends, so i know i am luckier than a lot of people, but on a bad day, any optimism dissipears and i worry about how much this condition will affect my daughters upbringing, as i am a single mum.
Sorry if this message is a bit dour, but its been a bad day.......

Oh my goodness, I'm so greatful I sound this.

I'm 17, and 8 weeks into my first pregnancy, and at about 70-80% of the AYME CFS scale. I've been ill for nearly a year and a half now, but I'm getting better, noticably so, now.

I'm TERRIFIED of being unable to cope as a parent when my baby is born. My boyfriends parents are quite set on me aborting because of my conditions (I also have Borderline Personality Disorder) but I'm determinded to keep the baby, and to be the best mother I can be.

It would really mean the world to me to be in touch with anyone with ME who is expecting, as my ME doctor is a paediatrics specialist, so hasn't experienced a pregnant patient before.

I think i can do this. I WANT to do this. I just don't want to be a bad mother, for whatever reason.

Also, has anyone else reallu suffered since they've been pregnant? My ME was improving, but since I fell pregnant, I'm back to needing to nap two or three times a day.

Oh and I'd just like to get this off my cheast. MORNING SICKNESS IS A BITCH.

Hope you're all well. x

Yes I have M.E and I'm pregnant, also I have a friend who is in her late 30's who has a 10 year old and a 2 year old who suffers with M.E

Hey cool my man is way into all that witch craft stuff I'm just learning about it now but he has practised for years : )

Does anyone from recent times still log onto this?

Hi, this thread is tucked out of the way a bit I find.
Hope your pregnancies are going well..

I have a 21 month DS and have had M.E./CFS for about 7/8 years. Is there anyone still around on here?

yes still around, how are you doing?

Coro, it's phantom of the chcolate cake. Hope you are OK.

Hope you are all well and had a peaceful christmas and new year

Are there still people around on this thread? I have had CFS for 13 years now, classed as highly functioning now but still have issues. Currently 9 weeks with second pregnancy (DD now 4 1/2yrs )- a bit nervous as had recently started rehab to try and get off this plateau I seem to have landed on since my last recovery (I peak and trough or is it crash and burn!) Very supportive hubby but he is clearly worried about my health.

Would be nice to chat to someone else with CFS who is currently pregnant!

Mrs S

Not sure how many people are still posting here, but I've just joined and I have Fibromyalgia/CFS and Hypermobility Syndrome.

Just thought I'd say "Hi!"

Hi Slightly Scatty - thought I was the only one here (watching the dust bunnies!) I have CFS - appears as well I may have hypermobility but don't know too much about it yet.

Good to know I'm not the only one around!

Mrs S

Hi. I found this in my watched messages...from waaaaay back (2007!).

I'm here. Not on MN a huge amount, but I will try and keep up with this.

I have a ds who is 4.5 (school in September - hurray). And twins. 20 months - arghhhhhhhhhhhhhhhh!

I find I am a lot better when pregnant and breastfeeding - thank goodness. Though the twin pregnancy was pretty hideous. I breastfed the twins till they were 18 or 19 months, so I've stopped for about a month now. I noticed even as I was cutting down on feeds since the beginning of the year, that my health got worse.

Anyone else noticed that?

I'm thinking of doing the Lightning Process. I know 2 friends now who have really been helped. So...trying not to read the negative stuff (dh has!), but not got round to actually booking it (too much invested in it). I get really depressed with my CFS now, so I find it hard to disentangle the whole thing.

Hi guys,
I've not been around much - rough times. I've just realised how long i last posted. Day passes in a blur at the moment.

How are people coming with the transition to autumn?

Hope to hear from you soon,
Coro

Hello all, I'm new to mumsnet. I'm 28 weeks pregnant and I've had ME for 5years and I'm looking for advice on Labour. I'm worried about how I'll cope with the lack of sleep and also the energy required to deliver my baby. It is so good to know I'm not the only one with ME. I hope you're all having a good day. Take care of yourselves.

Hi,
Congratulations on your pregnancy. I think labour itself is one of those things that all you can do is your best. There will be lots of support around you so try not to worry.

How has your pregnancy affected your ME generally? I found when I was pregnant my symptoms all but disappeared, though not everyone is as lucky.

I think being kind to yourself and sleeping when your baby sleeps are 2 of the most useful things I found. Let others support you with house stuff while you get yourself back together.
Hope this helps. Coro

Hi, I had M.E. for about 5 years when DS came along.

I had an appointment with a consultant before the birth and they recommended that you have an early epidural to minimise the amount of time that you are in a lot of pain, therefore saving more energy for pushing. I was worried I wouldn't have enough strength and energy to push.

The epidural was great, DH said I kept sleeping, I don't actually remember much until it came to pushing. However I did end up with a difficult forceps birth because DS was distressed, not sure if that had anything to do with the epidural, probably not but instrumental births are more common with epidurals.

Wrt to the tiredness and stuff after, yes the first few months were hard, but I found that as I was used to being tired all the time anyway, in some ways it helped me deal with it as I knew what it felt like and couldn't remember the last time I actually didn't feel tired.

HTH.

hi i have fibro and me
im a mum of three and i foster babies too,
my hubby has given up work to help me as i suffer awfuly with exhaustion and pain.

im currently using fentanyl 75mcg but they have made me throw up every day for 8 months so im hoping the pain specialist will wean me off when i go next week.
i have tried ketamine infusions which felt rather nice but did nothing for the pain, i have trid lignocaine infusions which did nothing at all!
i have tried pregabalin, lyrica, tramadol,oramorph, you name it i have tried it.
im going to ask and see if i can go on the ldn trials.

also i would recommend anyone with fibro to join the website i mention below..it is superb for advise re every aspect of fibro including benefits as they have their own qualified benefits advisor. its

www.fibromyalgia-associationuk.org