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Sjogren-Larsson syndrome
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Newbie joining..
Hi everyone, Not really sure what to write here. Have just going the group today hoping for some support from others who understand what it’s like to be in our shoes. I am from Nothern Ireland, have been diagnosed with PCOS from I was a teenager so always knew we would struggle to start a family
Hi everyone, Not really sure what to write here. Have just going the group today hoping for some support from others who understand what it’s like to be in our shoes. I am from Nothern Ireland, have been diagnosed with PCOS from I was a teenager so always knew we would struggle to start a family
Tryingtobe_Happy
in
Fertility Network UK
4 years ago
Opiates. Each and everyone
Will add to your ability to not be able to sleep sound. Twilight sleep Especially with oxycodone and cotin. Most people on them long term take some type of benzo or z drug which cause up problems . To help with sleep and the dam irritability oxys cause. Something you all should consider. They cause
Will add to your ability to not be able to sleep sound. Twilight sleep Especially with oxycodone and cotin. Most people on them long term take some type of benzo or z drug which cause up problems . To help with sleep and the dam irritability oxys cause. Something you all should consider. They cause
Hidden
in
Restless Legs Syndrome
4 years ago
Rheumatology 2nd appointment
I had my first rheumatology appointment earlier this month and had several blood tests, saliva test and schirmer's test done.I havent had results yet but I've recieved another letter today for another rheumatology appointment in October at a different hospital but at musco skeletal department,will this
I had my first rheumatology appointment earlier this month and had several blood tests, saliva test and schirmer's test done.I havent had results yet but I've recieved another letter today for another rheumatology appointment in October at a different hospital but at musco skeletal department,will this
Kels1974
in
Scleroderma & Raynaud's UK (SRUK)
4 years ago
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What to ask after miscarriage?
I have a follow up phone call today with my clinic today to discuss treatment following our mmc 6 weeks ago. I hope you could give me some help and ideas on questions to ask about the mmc and the next IVF cycle. To give you some background, this is my second mmc. First, ironically was 2yrs ago today
I have a follow up phone call today with my clinic today to discuss treatment following our mmc 6 weeks ago. I hope you could give me some help and ideas on questions to ask about the mmc and the next IVF cycle. To give you some background, this is my second mmc. First, ironically was 2yrs ago today
Miracle43
in
Fertility Network UK
4 years ago
RLS, Food and the wonder drug Pramipexol
I've reported, that intermittend fasting improved my RLS but christmas threw me out of it and I couldn't get back into anymore. My RLS is so bad that I have to eat to calm it down, my brain is screaming like a baby and I can't manage to overcome it. It's like the craving for a drug. But when I eat I
I've reported, that intermittend fasting improved my RLS but christmas threw me out of it and I couldn't get back into anymore. My RLS is so bad that I have to eat to calm it down, my brain is screaming like a baby and I can't manage to overcome it. It's like the craving for a drug. But when I eat I
silkyreg
in
Restless Legs Syndrome
4 years ago
Augmentation?
For 7 years I have taken one 50mg Tramador and 0.5mg Ropinirole. Lately the rls has kept me awake unusually from around 3am for 4 hours. I feel fortunate that I have no underlying illnesses and have regular blood tests which show amonst other readings my ferritin levels hovver around 100. I am 74 The
For 7 years I have taken one 50mg Tramador and 0.5mg Ropinirole. Lately the rls has kept me awake unusually from around 3am for 4 hours. I feel fortunate that I have no underlying illnesses and have regular blood tests which show amonst other readings my ferritin levels hovver around 100. I am 74 The
m1946
in
Restless Legs Syndrome
4 years ago
Lyrica dose
I take Sifrol 0,25mg per day which gives me partial absence of symptoms for some of the time. I was prescribed 0.25mg twice daily but after experiencing augmentation a while ago would rather stay on the once a day dose. My GP has prescribed Lyrica 200mg at night or 100mg twice daily. I don't feel
I take Sifrol 0,25mg per day which gives me partial absence of symptoms for some of the time. I was prescribed 0.25mg twice daily but after experiencing augmentation a while ago would rather stay on the once a day dose. My GP has prescribed Lyrica 200mg at night or 100mg twice daily. I don't feel
kelirock
in
Restless Legs Syndrome
4 years ago
Anyone based in Suffolk?
Hi, any lady based in Suffolk could be of great help to the community. Matt Hancock is MP there and also Minister for health. I cannot wrote to him as he only deals with his constituents. If you are based in Suffolk and happy to help on IVF, please get in touch here or on PM. I am trying to raise awareness
Hi, any lady based in Suffolk could be of great help to the community. Matt Hancock is MP there and also Minister for health. I cannot wrote to him as he only deals with his constituents. If you are based in Suffolk and happy to help on IVF, please get in touch here or on PM. I am trying to raise awareness
Lilly12255
in
Fertility Network UK
4 years ago
Just joined
Hello All, Good to have found this and I identify with lots that have been written about. I got a diagnosis of Fibromyalgia a few years ago and hypermobility, Brighton score 6/9 so not as bad as some though in my opinion he didn't check other places that I think there may be some hypermobility issues
Hello All, Good to have found this and I identify with lots that have been written about. I got a diagnosis of Fibromyalgia a few years ago and hypermobility, Brighton score 6/9 so not as bad as some though in my opinion he didn't check other places that I think there may be some hypermobility issues
Soracha36
in
Ehlers-Danlos Support UK
4 years ago
Lupus/Sjogrens or not ...
I posted the other day as I had an appointment booked with a specialist Lupus clinic tom am. I was so glad to get this appointment in a recommended Centre of Excellence, as I have been trying for years to get properly considered for Lupus and Sjogrens. Basically my reoccurring symptoms have just been
I posted the other day as I had an appointment booked with a specialist Lupus clinic tom am. I was so glad to get this appointment in a recommended Centre of Excellence, as I have been trying for years to get properly considered for Lupus and Sjogrens. Basically my reoccurring symptoms have just been
UrsaP
in
LUPUS UK
4 years ago
Scaremongering or Truth?
Like most people in the UK of late I tend to look at what the press is saying about the Covid19 pandemic. Firstly, let me say that I was horrified by Boris’s initial attitude of “all we need to do is wash our hands for 20 to 30 seconds”, whilst the administration in Hunan were spraying the streets with
Like most people in the UK of late I tend to look at what the press is saying about the Covid19 pandemic. Firstly, let me say that I was horrified by Boris’s initial attitude of “all we need to do is wash our hands for 20 to 30 seconds”, whilst the administration in Hunan were spraying the streets with
Geordie-Y
in
LUPUS UK
4 years ago
Baby with genetic disorder and pregnant again
Would anyone be able to help? I have a 10month old son who was diagnosed with William's syndrome a few weeks ago and I have just found out I am pregnant. Does anyone know the next steps, I was waiting to see a genetics counsellor however we are currently self isolating due to covid-19 and I'm to scared
Would anyone be able to help? I have a 10month old son who was diagnosed with William's syndrome a few weeks ago and I have just found out I am pregnant. Does anyone know the next steps, I was waiting to see a genetics counsellor however we are currently self isolating due to covid-19 and I'm to scared
Natasha213
in
Pregnancy and Parenting Support
4 years ago
RLS better but depression worse
So with my doctors help, I’ve decided to come off of Citalopram 40mg daily. My circumstances have greatly changed and I felt it was a good time to see if I could come off. I am completely weened off now. Surprisingly my RLS has been getting better but I’m now feeling that low mood and foggy feeling return
So with my doctors help, I’ve decided to come off of Citalopram 40mg daily. My circumstances have greatly changed and I felt it was a good time to see if I could come off. I am completely weened off now. Surprisingly my RLS has been getting better but I’m now feeling that low mood and foggy feeling return
Hidden
in
Restless Legs Syndrome
4 years ago
2nd night with no sleep
Hi, I’m only 17 and I started noticing symptoms of RLS at the beginning of this year once I started taking my antidepressants (Lexapro). When I told my doctor she just lowered my dosage which was helpful for a bit but it eventually got worse again. About a month ago I decided to stop taking my antidepressants
Hi, I’m only 17 and I started noticing symptoms of RLS at the beginning of this year once I started taking my antidepressants (Lexapro). When I told my doctor she just lowered my dosage which was helpful for a bit but it eventually got worse again. About a month ago I decided to stop taking my antidepressants
Janis67J
in
Restless Legs Syndrome
4 years ago
For women with low ovarian reserve hoping to restart IVF
I have Severely diminished ovarian reserve (DOR) and I am desperate to be able to do IVF again. I came across an article of the British Fertility Society. They are currently reviewing members‘ proposals on next steps. I emailed my clinic and asked them to email the BFS to request that treatment can
I have Severely diminished ovarian reserve (DOR) and I am desperate to be able to do IVF again. I came across an article of the British Fertility Society. They are currently reviewing members‘ proposals on next steps. I emailed my clinic and asked them to email the BFS to request that treatment can
Lilly12255
in
Fertility Network UK
4 years ago
Anyone with DOR hoping for treatment
Hi, I have DOR and I am desperate to be able to do IVF again. I came across an article of the British Fertility Society. They are currently reviewing members‘ proposals on next steps. I emailed my clinic and asked them to email the BFS to request that treatment can resume for women with DOR. For us
Hi, I have DOR and I am desperate to be able to do IVF again. I came across an article of the British Fertility Society. They are currently reviewing members‘ proposals on next steps. I emailed my clinic and asked them to email the BFS to request that treatment can resume for women with DOR. For us
Lilly12255
in
Fertility Network UK
4 years ago
Best painkillers
Morning all. I have been taking hydroxychloroquine since 25th Feb, 200 mg for two weeks and now 400 mg since Tuesday past. The joint pains seem to be getting worse. I was taking motifene, seen GP on Mon and he prescribed celebrex instead. So far, not any relief to be honest. What are your experiences
Morning all. I have been taking hydroxychloroquine since 25th Feb, 200 mg for two weeks and now 400 mg since Tuesday past. The joint pains seem to be getting worse. I was taking motifene, seen GP on Mon and he prescribed celebrex instead. So far, not any relief to be honest. What are your experiences
Charlie_25
in
LUPUS UK
4 years ago
Xarasho
I am Suffering from severe RLS and I’ve tried everything from vitamins to CBT OIL, 5 HTP Hydroxytry.. , nothing works, the only thing helps is the agnostic dopamine drugs which is for Parkinson disease, it has really bad side effects , please someone help me and be. genuine!!!
I am Suffering from severe RLS and I’ve tried everything from vitamins to CBT OIL, 5 HTP Hydroxytry.. , nothing works, the only thing helps is the agnostic dopamine drugs which is for Parkinson disease, it has really bad side effects , please someone help me and be. genuine!!!
Xarasho
in
Restless Legs Syndrome
4 years ago
Determined to walk Darcy this morning
3 weeks now I have walked Darcy 2 miles every morning. Woke this morning stiff and sore had to take codeine, Etoricoxib and paracetamol but determined to walk. 1/2 a mile less but it took an extra 45 minutes. Hate when this disease beats me I’m a bad looser. Thanks for listening to my grump. I’m off
3 weeks now I have walked Darcy 2 miles every morning. Woke this morning stiff and sore had to take codeine, Etoricoxib and paracetamol but determined to walk. 1/2 a mile less but it took an extra 45 minutes. Hate when this disease beats me I’m a bad looser. Thanks for listening to my grump. I’m off
Hidden
in
NRAS
4 years ago
BFN CD1 Not this month 😞
Af arrived bang on time this evening. While I didn’t quite “feel it” over the entire 2ww, I cannot help but feel extremely disappointed. By the time my ivf clinic reopens, there will be a long waiting list. I was half way through my monitoring cycle only, so I surely won’t be one of their priority patients
Af arrived bang on time this evening. While I didn’t quite “feel it” over the entire 2ww, I cannot help but feel extremely disappointed. By the time my ivf clinic reopens, there will be a long waiting list. I was half way through my monitoring cycle only, so I surely won’t be one of their priority patients
Mmmpudding
in
Fertility Network UK
4 years ago
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