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Beckwith-Wiedemann Syndrome
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Flare-up not under control and just don't know what to do
Hi everyone Bit of background: Had PMR for 3 years in October but only diagnosed 2 years ago in October. Been on a steroid reduction scheme but developed steroid myopathy in December 2019 (when I had a flare-up and increased steroids) which was only diagnosed in April 2020. Was advised to reduce 1mg
Hi everyone Bit of background: Had PMR for 3 years in October but only diagnosed 2 years ago in October. Been on a steroid reduction scheme but developed steroid myopathy in December 2019 (when I had a flare-up and increased steroids) which was only diagnosed in April 2020. Was advised to reduce 1mg
EscapedtoWales
in
PMRGCAuk
4 years ago
Aspartam!!!
For some months I've liked to drink Coke but always chose light to avoid calories. My RLS became an awful hell with severe pain. Now I stopped to drink it and am free of pain! I still have RLS and need Pramipexol at night but the hell of pain during the day is gone. Seems I'm very sensible to Aspartam
For some months I've liked to drink Coke but always chose light to avoid calories. My RLS became an awful hell with severe pain. Now I stopped to drink it and am free of pain! I still have RLS and need Pramipexol at night but the hell of pain during the day is gone. Seems I'm very sensible to Aspartam
silkyreg
in
Restless Legs Syndrome
4 years ago
Success with Suboxone?
Hi all - I’m new (posting) here. Thanks for being a community, I’ve read so many posts and found comfort from all of you!! Quick background - I have suffered with RLS at least 20 years - but probably my whole life. Started pramipexole .25 in 2000 and in 2018 was taking 2.75mg due to general lack of
Hi all - I’m new (posting) here. Thanks for being a community, I’ve read so many posts and found comfort from all of you!! Quick background - I have suffered with RLS at least 20 years - but probably my whole life. Started pramipexole .25 in 2000 and in 2018 was taking 2.75mg due to general lack of
erinjee
in
Restless Legs Syndrome
4 years ago
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Flare?
Ridiculously tired and headaches, thought it was heatstroke but now my knees are throbbing and my hand joints hurt I’m thinking it’s a flare?! Anyone else get similar, only diagnosed in January..
Ridiculously tired and headaches, thought it was heatstroke but now my knees are throbbing and my hand joints hurt I’m thinking it’s a flare?! Anyone else get similar, only diagnosed in January..
LLH76
in
Fibromyalgia Action UK
4 years ago
Sjögren’s lip biopsy testing
Hi everyone, My GP and I think I may have Sjögren’s syndrome, but so far have been seronegative for antibody testing. I would like to pursue other forms of testing such as a lip or saliva gland biopsy, but have no idea who to see to organise this? I could travel to either Sydney or Melbourne if needed
Hi everyone, My GP and I think I may have Sjögren’s syndrome, but so far have been seronegative for antibody testing. I would like to pursue other forms of testing such as a lip or saliva gland biopsy, but have no idea who to see to organise this? I could travel to either Sydney or Melbourne if needed
Blue-eyes79
in
The Australian Sjögren's Syndrome Association
4 years ago
Homeopathy meet after 2 years
Hi All, When I was diagnosed with PA in 2018 I was suffering a lot and met homeopathy. They claimed to cure PA in 3 years and made me to pay lot of amount upfront. I just believed them as I was going through a lot and nothing seems to give me relief as I was in early days of b12 injection treatment.
Hi All, When I was diagnosed with PA in 2018 I was suffering a lot and met homeopathy. They claimed to cure PA in 3 years and made me to pay lot of amount upfront. I just believed them as I was going through a lot and nothing seems to give me relief as I was in early days of b12 injection treatment.
Thulasi1
in
Pernicious Anaemia Society
4 years ago
Saved by Methadone
After years on Pramipexole 0.75 mg long acting , the inevitable augmentation occurred and I got off it with great difficulty. Since that time, August 2019, I have had very little sleep. I have tried tramadol, codeine, oxycodone, lyrica, Gabapentin, clonazepam, MSContin and various combinations. I have
After years on Pramipexole 0.75 mg long acting , the inevitable augmentation occurred and I got off it with great difficulty. Since that time, August 2019, I have had very little sleep. I have tried tramadol, codeine, oxycodone, lyrica, Gabapentin, clonazepam, MSContin and various combinations. I have
wairoa36
in
Restless Legs Syndrome
4 years ago
IcyHot for RLS
IcyHot, sold in the US, is helping me with my RLS. It is similar to Aspercreme, the only difference is IcyHot has MENTHOL in it. Menthol is the ingredient that helps cure with RLS!. It is true!! I am using it, as a matter of fact, I haven't had the need to use it in the last week. It is like a miracle
IcyHot, sold in the US, is helping me with my RLS. It is similar to Aspercreme, the only difference is IcyHot has MENTHOL in it. Menthol is the ingredient that helps cure with RLS!. It is true!! I am using it, as a matter of fact, I haven't had the need to use it in the last week. It is like a miracle
Micafe
in
Restless Legs Syndrome
4 years ago
False/positive results
I am on a methadone clinic. I have been on it for 6 years. In 2016, I started testing positive on the Dip test for Fentanyl. The clinic would send out the positive urine test to be confirmed. It would come back Negative from the lab. I am only coming up positive certain tests. The last test came back
I am on a methadone clinic. I have been on it for 6 years. In 2016, I started testing positive on the Dip test for Fentanyl. The clinic would send out the positive urine test to be confirmed. It would come back Negative from the lab. I am only coming up positive certain tests. The last test came back
Jewel_7Aniver
in
NRAS
4 years ago
Finally a diagnosis
Hi everyone - thanks for your kind & helpful messages since a joined a few weeks ago. My rheumatologist has diagnosed palindromic rheumatism and fibromyalgia. Prescribed Amitriptyline. It’s a relief knowing what is wrong, now I can start find out how to manage it. Has anyone else found Amitriptyline
Hi everyone - thanks for your kind & helpful messages since a joined a few weeks ago. My rheumatologist has diagnosed palindromic rheumatism and fibromyalgia. Prescribed Amitriptyline. It’s a relief knowing what is wrong, now I can start find out how to manage it. Has anyone else found Amitriptyline
Sunnyseas
in
NRAS
4 years ago
Anyone else with RLS & mind racing? Poor quality sleep.....
My RLS is under control with dopamine agents, insofar as the sensation in my legs is concerned...but my mind is constantly active and I don't sleep deeply at all. It's not consistent, sometimes it's worse than other times. I know the drugs can cause insomnia. I don't have a problem falling asleep, usually
My RLS is under control with dopamine agents, insofar as the sensation in my legs is concerned...but my mind is constantly active and I don't sleep deeply at all. It's not consistent, sometimes it's worse than other times. I know the drugs can cause insomnia. I don't have a problem falling asleep, usually
silkusmaximus
in
Restless Legs Syndrome
4 years ago
Early period or pregnancy
Hi. I had a missed miscarriage when I had to take Misoprostol in the first week of April. I got my first period on 12 May. Now three weeks later I've been getting pain in my lower abdomen and pink discharge. Do you think I am pregnant again or is it an early period? I never missed my 28 day cycle so
Hi. I had a missed miscarriage when I had to take Misoprostol in the first week of April. I got my first period on 12 May. Now three weeks later I've been getting pain in my lower abdomen and pink discharge. Do you think I am pregnant again or is it an early period? I never missed my 28 day cycle so
Hidden
in
Pregnancy and Parenting Support
4 years ago
Ropinarole
I was on ropinarole for 10 years and progressed from 1mg to 3mg and it still worked for my restless leg and the only reason I came off it was because I couldn't sleep and had heard of augument in relation to these tablets. Since I have come off them nothing else seems to work for me ie Gabapentin Pregabalin
I was on ropinarole for 10 years and progressed from 1mg to 3mg and it still worked for my restless leg and the only reason I came off it was because I couldn't sleep and had heard of augument in relation to these tablets. Since I have come off them nothing else seems to work for me ie Gabapentin Pregabalin
Jenkins1414
in
Restless Legs Syndrome
4 years ago
Opiates for treatment
54 yr sufferer here: SEVERE RLS in legs, hips and arms) with PLMD (I thrash 250 times/hr while asleep). FINALLY, relief: low doses of Methadone and Morphine taken over 6 hrs (5-11pm) have changed my life. I have had to increase both slowly, but I’m 75 so who cares?! No addiction problems. Also lots and
54 yr sufferer here: SEVERE RLS in legs, hips and arms) with PLMD (I thrash 250 times/hr while asleep). FINALLY, relief: low doses of Methadone and Morphine taken over 6 hrs (5-11pm) have changed my life. I have had to increase both slowly, but I’m 75 so who cares?! No addiction problems. Also lots and
Hidden
in
Restless Legs Syndrome
4 years ago
Chronic Fatigue Study
I came across this, and thought some of our members diagnosed with chronic fatigue might be interested in signing up: https://www.theguardian.com/society/2020/jun/23/uk-to-launch-genetic-study-chronic-fatigue-syndrome-cfs?CMP=share_btn_fb&fbclid=IwAR0d1eOCfiYLbj1YRNoaE-UB88_1aKWm4g9DotCR2gqM8PEequMzQWj6Gn4
I came across this, and thought some of our members diagnosed with chronic fatigue might be interested in signing up: https://www.theguardian.com/society/2020/jun/23/uk-to-launch-genetic-study-chronic-fatigue-syndrome-cfs?CMP=share_btn_fb&fbclid=IwAR0d1eOCfiYLbj1YRNoaE-UB88_1aKWm4g9DotCR2gqM8PEequMzQWj6Gn4
Cooper27
in
Thyroid UK
4 years ago
Advise please on Pregabalin
Hi, I’ve previously had advise when I was taking Ropinirole. I was on this drug for 11 years ended up augmenting and acquiring a gambling habit. I was advised to come off the Ropinirole which I did, taking a long and painful time doing so. I took a couple of Codeine to help me at the end. Since then
Hi, I’ve previously had advise when I was taking Ropinirole. I was on this drug for 11 years ended up augmenting and acquiring a gambling habit. I was advised to come off the Ropinirole which I did, taking a long and painful time doing so. I took a couple of Codeine to help me at the end. Since then
Scattypatty
in
Restless Legs Syndrome
4 years ago
Mirena IUD levonorgestrel levels after 6 years?
Hi there, I decided to have the Mirena IUD fitted 6 years ago for the treatment of Endio and will now need this replaced. Does anyone know how the hormonal side of the Mirena works in terms of longevity. ie Should I expect any side effects when this is replaced as the level of levonorgestrel has lessened
Hi there, I decided to have the Mirena IUD fitted 6 years ago for the treatment of Endio and will now need this replaced. Does anyone know how the hormonal side of the Mirena works in terms of longevity. ie Should I expect any side effects when this is replaced as the level of levonorgestrel has lessened
Posh5000
in
Endometriosis UK
4 years ago
Thinking of everyone going through a mmc
Hey, I know there are a few that have been through a miscarriage in the last couple of weeks and a few that have opted for surgery. I had an MVA this morning so I totally feel for you all. The procedure really wasn’t very pleasant and my husband couldn’t join me which was less than ideal. However the
Hey, I know there are a few that have been through a miscarriage in the last couple of weeks and a few that have opted for surgery. I had an MVA this morning so I totally feel for you all. The procedure really wasn’t very pleasant and my husband couldn’t join me which was less than ideal. However the
hifer
in
Fertility Network UK
4 years ago
polyp removal cost ?
Hi everyone ,had anyone polyp removal from the uterus ,do you now how much it cost on private clinic ,i am doing IVF and because of this polyp i had to freeze my fresh transfer ,i do not where to take it off the GP it is closed ,i want to do it in private ?thank you
Hi everyone ,had anyone polyp removal from the uterus ,do you now how much it cost on private clinic ,i am doing IVF and because of this polyp i had to freeze my fresh transfer ,i do not where to take it off the GP it is closed ,i want to do it in private ?thank you
Blerta
in
Fertility Network UK
4 years ago
Restless legs. Struggling a lot.
I am 24 . I have fibromyalgia and restless legs. I have been prescribed ropinirole on 1mg for 2 weeks now. And i am still tossing and turning at night and can’t sleep. Waking up during night the checking the time. I am about to cry my eyes out now. I can’t cope
I am 24 . I have fibromyalgia and restless legs. I have been prescribed ropinirole on 1mg for 2 weeks now. And i am still tossing and turning at night and can’t sleep. Waking up during night the checking the time. I am about to cry my eyes out now. I can’t cope
Hayley20202
in
Restless Legs Syndrome
4 years ago
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