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bloody effing Fibro

(38 Posts)
PancakesAndMapleSyrup Tue 12-Apr-16 00:38:12

Im in complete agony and despite my cocktail of drugs ive had to put on 2 spare transtec 35 patches on for the past 7 days. The kids still have 1 week left off school and im not sleeping therefore exhausted is not the term. DH takes over after work completly and my DM is helping out everyother day but i just cannot cope and im soooo stressed. I burn, cramp, ache, cant lift the f img kettle etc. Its a poor me moment. Feeling very very let down (cracking up) by body and MH.
Oh and Fuck Pacing with a 5 and 8 yr old!!!!!

Happyat40 Tue 12-Apr-16 01:48:52

OP I'm wide awake with my fibro sad.
Tomorrow I will be exhausted again and like you I have 2 DC off school - 10 and 8.

It really is a horrible, horrible illness.

PancakesAndMapleSyrup Tue 12-Apr-16 09:29:50

Oh Happy how are you today? I took another sleeping pill that got me off but fitfully slept again. The school holidays as much as i do love having them around is a gang of 'what are we doing today?' ....'im bored' and on and on! Ive been up for 2 hrs and meds are just setting in. Now that is boringgrin

Happyat40 Tue 12-Apr-16 11:02:16

Pancake I'm fed up sad

Slept rubbishly again and my legs are hurting so much. I can feel all the myofacial lumps in them and know that acupuncture would help but I just can't afford it.

Absolutely brassic to be able to do anything nice with the children eg the cinema and the weather is pants so as you say it's a constant barrage of "what are we doing today?".....

I'm moaning I know. Sending gentle hugs for you!

LivingInMidnight Tue 12-Apr-16 16:14:47

Happy you can get acupuncture on the NHS. I've had it before. Through pain clinic.

sweetkitty Tue 12-Apr-16 16:18:22

Can I join you? I don't even have an official diagnosis yet but I'm so fed up with the bloody pain, I've burnt myself the past 2 days and now I'm too tired to even think all I want to do is lie in bed. I have 4 DC at school too.

Fibro can f* off

Badders123 Tue 12-Apr-16 17:26:05

I hear ya
Back to work yesterday and I'm knackered
Dh comes home and I tend to just go upstairs and relax/sleep/lie in a dark room
I was ill all over Easter and ended up on abx which I think may have given me thrush
Lovely confused

Happyat40 Tue 12-Apr-16 23:45:53

Living Iv had acupuncture on the NHS too - but the nhs staff are fairly regimented in how many needles and where they put them.

HooseRice Tue 12-Apr-16 23:55:34

Shoot me down in flames, especially if you've already heard this or tried it. I was chatting to a distant cousin of mine today who was so bad with fibromyalgia that she walked with sticks, couldn't work (she's a nurse) and had a blue badge. She went vegan and after six days she started to get better. She's been good for several years now, is drug free and back working, nursing night shift with the elderly so obv physical. She reckons it is the no dairy rather than no meat that is making the difference but remains vegan.

Happyat40 Wed 13-Apr-16 07:48:21

Hoose- fibro is a central nervous disorder so I'm not really sure about that one .
It's pretty much like saying eating bananas can cure diabetes .

HooseRice Wed 13-Apr-16 10:07:10

Hi happy, I thought as much. It was only yesterday I saw the cousin then coincidentally read the thread. She was obv delighted with her recovery and puts it down to that. If it worked for everyone it would be the first thing recommended by docs. She's a nurse who didn't work for several years due to the illness and was very convinced/convincing when she was telling me. In any case I'm happy for her that she's recovered and looking great.

LivingInMidnight Wed 13-Apr-16 17:32:03

It sounds to me like she was misdiagnosed and didn't have fibromyalgia in the first place tbh. It's nice that she's ok now.

Bettertobehealthy Wed 13-Apr-16 20:30:36

Hi Pancakes ,

So sorry to hear about your problems - many people have fibro symptoms , which can occur when vitamin D levels are below optimum for your body.

There is a lot of research that indicates that a blood level of 100 and above is helpful , in many body systems. Have you had your level checked. ? This time of year is critical, because over winter , mid-Oct to mid-April, you cannot make vitamin D from sunlight in this country, your level will be at its lowest for the whole year. ( Depending upon your supplementation - if you take any. )

It may be very helpful to you , and any Fibro sufferer, to take enough Vitamin D , over many months to get your blood level up to the 100 or even 120 - 140 level. That sort of level can be found in healthy outdoor workers and humans living a natural lifestyle over millions of years. It is only in the last few years we have changes our lifestyle to reduce blood levels to the common level found in this country now. i.e. 30 to 60

Have a look here

and also here

for a lot more information about it.

It is a safe , cheap, easy thing to try , and I could be very helpful to you.

Have a look at a few of my other posts here on Mumsnet , where I try to explain why.

Good luck , hope this is helpful


Happyat40 Thu 14-Apr-16 10:08:02

Hoose that's great to hear.

Vitamin D does help - but get your GP/rheumatologist to check your levels first.

sweetkitty Thu 14-Apr-16 10:24:08

Hoose - I'm practically vegan and probably have fibro, according to my friends all I need is a steak to cure all my ills! It's getting boring now ow they are always going on about my diet.

Anyway back to fibro rant today it is my middle/lower back am in agony despite cocodamol.

sweetkitty Thu 14-Apr-16 10:24:51

Oh I've had my vitamin D checked twice levels are perfect I do take supplements thiugh

PancakesAndMapleSyrup Thu 14-Apr-16 23:37:50

Hiya thanks for all your posts! DH has been off for 2 days as ive been in bed, comatose and incoherant. Nit great, he just wakes me up with a glass of water and my neds and then deals/takes out the kuds. I think just 3 weeks of having the kids off has killed my body. Hes booked me into the spa for friday too to perk me up bless. We are late 20's so its hard for him to deal with too. As mahoosivly depressed and have PTSD.
I get ky bloods done every 3 months. Im taking 3000mg vit d now a day to keep it within the normal ranges alongside K2, calcium, omega 3, b vits etc. Have booked a nutritionist for late next week too . I know i dont eat badly at all but a bit of help to boost vits naturally opposed to supplements. I know i can use t'internet but she comes reccomended and i cant see the harm. Ive asked doc for fentanyl patches but am waiting for an answer. We shall see. Lots of burning at the mo and randon muscle twitching along side usual pain. How is everyone else?

AnnieOnnieMouse Thu 14-Apr-16 23:59:52

Yeah, I'm dairy free, and eat very little meat - so people tell me it's the wheat I need to avoid. There are always some people will tell you their pet theory.
I must admit, tho, I do feel far worse if I have accidentally eaten anything with milk in it. I'm fortunate and have been able to rest most of yesterday and today.

sweetkitty Fri 15-Apr-16 00:17:17

Rubbish day today for me too pain wise. Lower/middle back was total agony today even with cocodamol. Bit better today but I've had stabby chest pains/pelvic pain and knee pain. Tingly hands too.

I feel the only people I can connect to and tell how I'm feeling are fibro people does that make sense at all? No one else know what it's like. Unexplained pain that moves round your body. Not too bad fatigue wise but I'm not doing as much as I used to which seems to be helping.

PancakesAndMapleSyrup Fri 15-Apr-16 00:29:24

Annie, is thatvdown to the fibro or an intolerance?
Kitty, i completly can relate to that. My new physio also suffers with fibro and was explaining stuff and i just sat and cried as she conpletly understood my pain. Problem is that most of it is 'invisible' so people cannot relate to what you are feeling/going through at the time. Thats what makes it crap (alongside stuffing pills down ur gullet all the time!)

Openmindedmonkey Fri 15-Apr-16 08:48:59

Morning, I'm new posting here, have only just seen this thread, so pleased I have found you!
Hope you all got some sleep last night & aren't hurting too much today.
(My feet & thighs are buggers this morning, neuropathic & myofascial respectively)
Thought you might appreciate a brew to help you on your way (black, almonds, soy, rice or dairy, the choice is yours!)

PancakesAndMapleSyrup Fri 15-Apr-16 15:12:07

Welcome Monkey flowers come and join im a coffee with milk lol but no cake!!! Whats myofacial? How are your legs tosay? Ive just been given oramorph for breakthrough pain so am greatful even though it gives me throat infections. Urgh. Off to hydrotherapy yum :D

LivingInMidnight Fri 15-Apr-16 16:09:46

pancakes I think you've found the perfect physio! jealous

PancakesAndMapleSyrup Sat 16-Apr-16 00:02:13

Living yep bloody marvellous!, she is not as bad and never has been but only works part time as the stress makes her flair up. Completly understood! I luffs her!

Openmindedmonkey Sat 16-Apr-16 09:35:31

Thanks for the warm welcome!
Myofascia is the layer above the muscles (I think of that white thing above a chicken breast & below the skin). For me, it hurts over my thighs; massage helps but it's flippin painful whilst it happens. I have a few tender spots which we've decreased a little over the years, but they often hurt most during a flare - & can be a warning of one coming. Apparently myofascia is full of nerves which FM likes to irritate.

Hope you all have a good day x

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