Hi Dee I would still ask your dr to refer you it's worth a try I always thought you have the right to see any hospital you wish for second opinion I will see the Neuro again in Oct here and will ask them to send me there it's dr gosal there who specializes in sfn Google him his reviews are great he always tried to get to the bottom of it ,there saying manchester won't help me as my Neuro view is that I've had tests all fine it's sfn so it's pain relief only as idiopathic that's all I hear I've tried turmeric, high dose b12 selenium iron everything it says can help I have tried nothing works , there's loads of blood tests I've read online that they never gave me mercury, excess b6 hormones there are a Lot of women in a menopause group I've seen that have tingling but mostly on and off not none stop and I have no menopause symptoms at all in fact I have an 8 month old baby I went through a full pregnancy with this none stop no Drs where interested even then, I've decided to stop the cymbalta I havent taken it for two days now I don't see the point I sometimes thought it was helping but then flared worse and I'd rather be drug free if the benefit isn't sum relief at least ,there's so little known about this illness there is a fb group small fibre neuropathy support I also have fb if you would like to keep on touch that way please pm if you would like my name to add
,Hi Dawn
I don’t think there is any meds that help this sfn i have had them all I think.
all bloods normal brain scan normal but then again I have read sfn is outside the brain ,think I need a soft tissue scan, but that frightens me as scan even affected my nerves in my temples I feel as though my nerves are plugged in to a electric socket,
i wonder if sub has got any help or new meds from Manchester.as he has nt posted again.I don’t know how you cope with a baby you are very brave!
i know you have no choice but you need a pat on the back,
i thought yours might have gone after you had your baby ,
as hormons are another complicated thing,
have you thought about an antidepressant for a short time to see if they could help.
Im just unlucky enough nothing works
i think I may be past any thing that help,s.
they way my doctors concerned, I’m so embarrassed to go,to see her.
.
Ive only tried cymbalta anti depressant wise as that's also quite a powerful one as well as one of the only things to help sfn or so they say it did lift my mood but the tingling continues I've been on it since May at 30 mg I know it's very hard to get off at higher doses and Drs want it higher so I'm going cold turkey off it there's no benefit so what's the point I don't want to be completely hooked on something that isn't doing much ,pregabalin did nothing at all but give me bad side effects and pain killers do nothing at all I've got the neupro patch at home haven't dare put it on yet ,we need a list of things we both have tried bloods we've had and tests diet allergies there has to be something missed in us both
Hello have you been back to Manchester with any luck on new meds
or treatments.
Dawn don’t cold turkey of cymbalta reduce over time as it’s to strong to just not take it,I could nt take it but also did nt like the wright up it had on the internet.take care with some of these meds.
Hi
ive just joined as my husband has sfn hes had for 2 years now and it has got worse.
its the pain management we are finding really hard.
He has it in both legs and feet also across back in both arms and hands also under ribs.
The pain can fluctuate from burning to sharp and i have to say its been life changing for us.
ive noticed its been 2 years since you posted,im just trying to reach out to be able to talk to people who suffer this terrible condition.
would love to hear from someone.
viv
Hi
my husband has just been diagnosed with small fibre neuropathy after 2 years of chronic pain and a biopsy.
hes on 30 mg butec patches and 500mg gabapentin x3 times a day also takes anti anxiety ventafluxine which help him to sleep.
hes pain is in both feet both legs across all of back diwn both arms in neck and around lower ribs.
weve never been abke to find causejust came on 2 years ago mainly in legs and lower back then just went from there.it fluctuates in sensation sometimes burning sometimes cutting either way hes only really managed to get it to a 4/5 on 4 days out of 7.
ive heard good information in regard to salford hospital in manchester they have a department that deals with small fibre neuropathy im trying hard to get him refered.
i would love to hear from people now who are having to deal with this condition and know what theyre experiencing as I have to say nedically we dont feel supported.
all the best
viv married to Ed
progressive. no work. life scaled back activities.
ask for a QSART test. and get a good Neurologist.