New Rheumatologist dr says my daughter Fibromyalgia
shrek99
Member Posts: 12
we went to hopstial today and new Rheumatologist says my daughter has fibromyalgia and not rheumatoid arthritis
can anyone tell me about fibromyalgia and what help's
can anyone tell me about fibromyalgia and what help's
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Comments
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Hi Shrek, i am really sorry about your daughter. I have RA so I cannot give you much information about your daughters condition.
There are a few on here that will come along soon to give you the benifit of their experience.
I think that some of the medication is the same as for other arthritis types but I know she will be in distress and you will both be struggling to come to terms with it.
Please keep posting and asking questions.
Sorry I am not much help but sending you both my support.
Lv, Ix0 -
did you ask on help line they good with lincs that help valval0
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Hiya
Sorry to hear about your daughter. Just to let you know that I have both Fibro and RA.
Did your daughter's rheumy test her pressure points to confirm fibro? Since I've been diagnosed there have been some drug developments to help. The best thing for me is having good management techniques. Sleep is very important, having good quality sleep will help massively (this is where some of the meds can help - I took 10-20mg Amitriptaline every night which would knock me out, if I didn't take it I would be mostly asleep but I would be very restless and sometimes it would keep me awake). Get a good mattress. I've got a tempur mattress which I would not go without. It can be pricey but as your daughter has an illness she can probably get the VAT off. Plus you can get cheaper if you shop around on the internet. Other than that you can get a memory foam topper for the mattress.
Getting your pain management sorted - have different options from mild to strong so your daughter can keep the pain in check. I found taking charge of my conditions (doing my own research, challenging the doc's to come up with alternatives etc). Its also important to remember that the doc;s may suggest something but you don't have to do it. I approach it as a team with the docs rather than them telling me what I'm going to do (perhaps that's just my stubborn nature).
Relaxation techniques can also help. Planning your week, if you are going to have a busy few days 'book in' a few days of rest to compensate. I find if I keep going then it all becomes too much.
There's lots of things online and the way fibro effects your daughter can be different to other people.
I hope this was vaguely useful and I'm not teaching you to suck eggs. Please give your daughter my best wishes and tell her to keep her chin up.
Jen0 -
hi thanks for your reply0
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hi thanks jen your reply is very helpful your shrek
Yes he do this test on my daughter
when he press pressure points my daughter jump so high and was in lots of pain
he has put her on amitriptyline to start off with
so hope this will help her0 -
hi shrek99 ,
so sorry to hear about your daughter;that must be worrying for both of you. :roll:
I don't have fibromyalgia but found this link on the forum for you that might help answer some of your questions
http://www.arthritiscare.org.uk/AboutArthritis/Conditions/AboutArthritis/Conditions/Fibromyalgia?gclid=CMLrh6Hzz6ICFZEA4wodGl2vyQ
best wishes..
Iris x0 -
Hello, I'm sorry that your daughter has this nasty, painful disease.
One good thing is that you do now have a diagnosis, which means that you know whats causing your daughter to be ill.
I hope she will feel a bit better with the medication.
Love Sue0 -
thanks for the relpys and support yours shrek0
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Hi Shrek
My ex MIL has fibro and gets on ok - she has amitrip at night which makes a huge difference as sleep is crucial wioth fibro.
She also has dirreent p[ain killers to take very like I have
She has to pace herself - things like planning ahead and spreading tasks ou,t rather than doing them in one go like she used to, will help your daughter.
A/C to have a good leaflet which I downloaded for my MIL.
You take care - she will be opk with your support.
Love
Toni xx0 -
thanks for replly help info yours shrek0
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Hi Shrek,
I am sorry your daughter has been given this diagnosis. Its ok once the right meds have been found. I 'probably' have it as well and the pregabalin is very good for helping it along a bit. Hand in there and I hope they have put her on some decent meds? Nice to meet you by the way. Cris x0
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