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Any other Mums with Fibromyalgia out there?

9 replies

Brewster · 08/03/2010 09:20

I have fibromyalgia and would love to get in touch with other mums suffering from this.

Am having a bit of a flare up at the moment and wonder how you cope with it all?

Thanks

OP posts:
Are your children’s vaccines up to date?
rockinhippy · 08/03/2010 10:00

Hi Brewster, Yes, I have Dx of Fibro & M.E.... & yes its tough, but thankfully I've learned how to cope....we have to don't we, considering how little help the medics can give us

Dealing with an ongoing flare myself, so I can emphasise with you, but spring is on its way, so onwards & upwards, as the good weather always helps a bit

Have you tried Manual Lymphatic Drainage? thats the most helpful massage I've found, I also swear by Spirulina, Magnesium, & 5 Htp, & aromatherapy, Also if you've not heard of it, I can recomend Dr Peatfield Durrants Thyroid books...I know several people dx with FM getting their lives back thanks to that

Brewster · 08/03/2010 10:34

TH
hanks for replying.
I am very newly diagnosed though I had CFS when I was 18.

I take beroca and magnesium....what is 5 Htp?

I was looking into primrose oil as i am wondering if mine gets worse a week before i am due.

I have amitryptiline but am slowly having to come off that as I have been getting terrible headaches and dizzy spells lasting all day.

I have just come off teh pill as later in the year we are thinking of having another baby.

OP posts:
rockinhippy · 08/03/2010 11:27

Hi
I had a really bad reaction to Amytriptiline, a lot of us do, so its good you are coming off it, have you looked on the FMA UK website?, thats pretty good for info & support, especially if you are new to it all
www.fibromyalgia-associationuk.org/community/index.php#1

% htp is a naturally occurring amino acid, that your body needs to maintain healthy nuro transmitters, its especially good for sleep, taken 1 or 2 half hour or so just before bed time helps you get a better nights sleep, & getting control of your sleep is a big step towards controlling FM more info here www.answers.com/topic/5-htp

Star flower oil is similar, but much more potent than primrose oil, though I think you'll find that all of us with FM find theres a hormonal link to flares, studies have been done & proven a link, so not sure it will help that much, but we are all different, so always worth a try.

another good supplement is Flax seed or Cod Liver oils, takes a couple of weeks for effect, but has a lot of benifits.

Nurozan is a brain boosting supplement, & I found that very good too,

Have you looked at your diet at all??..... eating a chemical free natural diet, & looking out for any food intolerances is always good, as a lot of us cant tolerate things like Wheat, or diary, or meat....nt as bad as it first sounds, as after a detox, you can usually get away with eating things now & again without too many problems, but if your system is overloaded...you feel it.

& also make sure you have been tested for ALL possible other ailments, as a lot of us eventually get an alternative or additional dx, as not everything is on the standard battery of blood tests.....things like hyperthyroidism, hughes syndrome, lymes disease, pernicious aneamia, & Scleroderma are all possible alternatives

if you had CFS at 18, then its likely you may be sensitive to a lot of the newer drugs, for some reason those of us with CFS too, find it difficult to tolerate a lot of drugs, so if you do try new ones, plan it so you can try them without it impacting on your family too much if you do have a bad reaction Personally I've given up, & stick to old favourites such as Paracetamol, Ibruprofen, Diazapm for muscle spasms, & Morphine for very bad days,

Interested in this thread?

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Brewster · 08/03/2010 11:43

wow that is loads of really helpful info.

I will get on to reasearching and buying some of this stuff.

How do you get prescribed morphine?

Are all the other ones you mentioned available in somewhere like Boots or Holland and Barrets?

The food thing worries me to be honest as I have a history of eating disorders....so worried if I start really examining what I eat it may become a bit obsessive and lead down a bad path.

I also have alot of deprssion and anxity disorder. I am currently having CBT which is great.

I had terrible post natal depression and quite a painful pregnacy.....

How were your pregnancies?

OP posts:
decena · 08/03/2010 21:02

Yes, but I don't think I will be of much help as being pregnant stopped my fibro! I had it for 5 years prior then it disappeared when pregnant 7 years ago.
In the last year, I have had the occasional bouts of muscle twitches (fasiculations (sp?) but no other symptoms have returned.
You have my sympathy though.

Coldhands · 08/03/2010 22:03

I have M.E./CFS. I have noticed that many people with fibro say they also have or have had M.E. as well. What is the difference? TBH I have always thought that the symptoms are so similar, I don't know how docs diagnose them seperately.

Brewster · 10/03/2010 22:04

I think the difference is that with CFS you are just totally wiped out and knackered by the tiniest of things but with Fibromyalgia you are also in a lot of pain......that is my experinec anyway.

so...decena ... there is hope for me with the next pregnacy and it all disappearing??

xx

OP posts:
NieuB · 16/03/2013 15:05

cfs/ me/fibro mialgia = all the same thing - lots of different names for a group of illnesses with the same symptoms nobody( medical fritirnity) can decide on one name

buildingmycorestrength · 16/03/2013 20:01

Come over to the Spoons thread on general health.

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