Search
Search
About
Log in
Join
Experiences with
Coats plus syndrome
Posts
Communities
3,296 public posts
Filter results
Temgesic - letter to the Consultant - raising the profile
If you take a look at my post 'Thought for the Day' you'll understand the context of this letter we sent to Mrs P's consultant. I'm urging suffers to write down their experiences and send it to their doctors. We sent this as an email together with the evidence for Temgesic success stories. I'm hoping
If you take a look at my post 'Thought for the Day' you'll understand the context of this letter we sent to Mrs P's consultant. I'm urging suffers to write down their experiences and send it to their doctors. We sent this as an email together with the evidence for Temgesic success stories. I'm hoping
puzzler1
in
Restless Legs Syndrome
4 years ago
Buprenorphine/Subutex
Hi all-I’ve been able to find a clinic here locally in Oklahoma City that is working with me on the withdrawal from pramipexole. The quick background on my RLS is 30plus years deep with the highest dose of prami being 3.25 mg. Buprenorphine is working. I am now at .16 mg with bouts of breakthrough occasionally
Hi all-I’ve been able to find a clinic here locally in Oklahoma City that is working with me on the withdrawal from pramipexole. The quick background on my RLS is 30plus years deep with the highest dose of prami being 3.25 mg. Buprenorphine is working. I am now at .16 mg with bouts of breakthrough occasionally
erinjee
in
Restless Legs Syndrome
4 years ago
consultant?
Hi. I have been under the lupus unit for 16 years but was recently discharged. I have a condition called antiphospholipid syndrome but they believe this is sufficiently controlled for me to not go there anymore. I believe I also have RA but they say not. And I was previously told I had Sjorgrens, but
Hi. I have been under the lupus unit for 16 years but was recently discharged. I have a condition called antiphospholipid syndrome but they believe this is sufficiently controlled for me to not go there anymore. I believe I also have RA but they say not. And I was previously told I had Sjorgrens, but
donnabrain
in
Fibromyalgia Action UK
4 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Is this a positive lip biopsy?
I suffer from nonspecific autoimmune myositis, small fiber/autonomic neuropathy and dysautonomia. My autonomic doctor I just started seeing sent me for a lip biopsy since I have many of the symptoms often associated with sjogrens but am seronegative. My biopsy reads “minimal chronic inflammation” but
I suffer from nonspecific autoimmune myositis, small fiber/autonomic neuropathy and dysautonomia. My autonomic doctor I just started seeing sent me for a lip biopsy since I have many of the symptoms often associated with sjogrens but am seronegative. My biopsy reads “minimal chronic inflammation” but
Goldyukr
in
The Australian Sjögren's Syndrome Association
4 years ago
Lyrica - side effects
Hi I’ve just been reading some of the recent posts about medication for RLS. I can honestly say the only thing that worked for myself was co codomol a 60 mg dose before bed time. I have bowel complications ( high risk of blockage ) And found that this was making me too constipated so had to stop . I
Hi I’ve just been reading some of the recent posts about medication for RLS. I can honestly say the only thing that worked for myself was co codomol a 60 mg dose before bed time. I have bowel complications ( high risk of blockage ) And found that this was making me too constipated so had to stop . I
Esme2007
in
Restless Legs Syndrome
4 years ago
Smoking and Fluoxetine
After stopping the Fluoxetine and quitting smoking my restless legs have gone completely. Think the smoking has played a big part of the problem for many years (about 20) which gave me restless legs every other day at different times but when I started taking the Fluoxetine the condition was far more
After stopping the Fluoxetine and quitting smoking my restless legs have gone completely. Think the smoking has played a big part of the problem for many years (about 20) which gave me restless legs every other day at different times but when I started taking the Fluoxetine the condition was far more
Bengal5
in
Restless Legs Syndrome
4 years ago
Covid - how long til Xray shows improvement?
My mom has been on a ventilator now for 17 days. Everyday they do the X-ray and there is no improvement on the consolidation and now shows a small pleural effusion on the left lung. She also has subcutaneous emphysema. Ventilator back to 100 and she’s saturating 93%. I just really want her to turn the
My mom has been on a ventilator now for 17 days. Everyday they do the X-ray and there is no improvement on the consolidation and now shows a small pleural effusion on the left lung. She also has subcutaneous emphysema. Ventilator back to 100 and she’s saturating 93%. I just really want her to turn the
Color27
in
ICUsteps
4 years ago
Trazodone for RLS?
Hi my fellow sufferers :-( . I've been doing a lot of research online, and today I found something interesting. I've been taking Lexapro for my depression for several months now. For some reason a few weeks later my Doctor prescribed Trazodone and I didn't understand why she would prescribe two depression
Hi my fellow sufferers :-( . I've been doing a lot of research online, and today I found something interesting. I've been taking Lexapro for my depression for several months now. For some reason a few weeks later my Doctor prescribed Trazodone and I didn't understand why she would prescribe two depression
Micafe
in
Restless Legs Syndrome
4 years ago
*sensitive* Remember me? Thought I would share an update.
Hi all, I just wanted to post on this forum because I received amazing support from this community when I was going through multiple miscarriages from IVF. Through some of my lowest lows, there were members of this forum who talked me through with kind words of support. I also know that I always got
Hi all, I just wanted to post on this forum because I received amazing support from this community when I was going through multiple miscarriages from IVF. Through some of my lowest lows, there were members of this forum who talked me through with kind words of support. I also know that I always got
Violet180
in
Fertility Network UK
4 years ago
12 consolidation runs and a PB! (And a q on rest days)
Been trying to make sure I take my rest days and have managed 12 consolidation runs since my graduation on 15 August. Have mostly stuck with 5k with about 4 5mile runs thrown in too! Didn’t realise how quickly I’d set off and had to double check I wasn’t reading it wrong but 7.44 for my first mile! WOO
Been trying to make sure I take my rest days and have managed 12 consolidation runs since my graduation on 15 August. Have mostly stuck with 5k with about 4 5mile runs thrown in too! Didn’t realise how quickly I’d set off and had to double check I wasn’t reading it wrong but 7.44 for my first mile! WOO
Gaily23
Graduate
in
Couch to 5K
4 years ago
Clonazepam
just been put on clonazepam 500mcg per day. this seems to help with RLS but does not keep me asleep all night I tried taking 2 tablets but side effects next day were terrible. i was prev on Zolpidem which were brilliant for sleep but not good for RLs so ended up on other medication for RLS. Still gtting
just been put on clonazepam 500mcg per day. this seems to help with RLS but does not keep me asleep all night I tried taking 2 tablets but side effects next day were terrible. i was prev on Zolpidem which were brilliant for sleep but not good for RLs so ended up on other medication for RLS. Still gtting
Mike-tyson
in
Restless Legs Syndrome
4 years ago
No sleep RLS
I'm going to sleep Dr. tomorrow, thank goodness. I am up all night no sleep, leg pain and itching. I have RLS and PLMD, Gabapenten does not work for me it makes me feel like I'm a zombie all day and ropinirole doesn't do anything anymore. I have taken some hydrcodonne, but it doesn't really work either
I'm going to sleep Dr. tomorrow, thank goodness. I am up all night no sleep, leg pain and itching. I have RLS and PLMD, Gabapenten does not work for me it makes me feel like I'm a zombie all day and ropinirole doesn't do anything anymore. I have taken some hydrcodonne, but it doesn't really work either
Seehowyour
in
Restless Legs Syndrome
4 years ago
Opinions please on whether anyone would increase their Ropinirole dose?
Hello everyone, Can I ask what you would all do in my situation as I am in a real dilemma.? I had been taking Ropinirole for a number of years before it started not to work and I couldn’t tolerate the extra dose (became agitated and panicked) I was then prescribed Pramipexole which worked for quite a
Hello everyone, Can I ask what you would all do in my situation as I am in a real dilemma.? I had been taking Ropinirole for a number of years before it started not to work and I couldn’t tolerate the extra dose (became agitated and panicked) I was then prescribed Pramipexole which worked for quite a
21years
in
Restless Legs Syndrome
4 years ago
I'm having a restful time
I cant believe I've been rls free for the last maybe 7days.my husband says he notices that this does seem to happen like a cycle, I'm trying to sort out my diet ie. Gluten, alcohol, white bread etc. It's hard to do because I need to find alternatives but I'm gonna keep on with this trial, also I didnt
I cant believe I've been rls free for the last maybe 7days.my husband says he notices that this does seem to happen like a cycle, I'm trying to sort out my diet ie. Gluten, alcohol, white bread etc. It's hard to do because I need to find alternatives but I'm gonna keep on with this trial, also I didnt
Whymelord
in
Restless Legs Syndrome
4 years ago
UK RLS sufferers this is for you.
This week I received an Email from Professor David Nutt also from our Manerva ;] Buprenorphine in the form of TEMGESIC 200mcg is available from your GP also I suspect Norspan patches which is buprenorphine dosing starting at 5mg. Buprenorphine is a very superior drug it hangs onto very few receptors
This week I received an Email from Professor David Nutt also from our Manerva ;] Buprenorphine in the form of TEMGESIC 200mcg is available from your GP also I suspect Norspan patches which is buprenorphine dosing starting at 5mg. Buprenorphine is a very superior drug it hangs onto very few receptors
Shumbah
in
Restless Legs Syndrome
4 years ago
Has anyone augmented on Tramadol
I’ve read that augmentation on Tramadol is rare but I think I may be augmenting already. Did so on Recuip after about 8 months now after only 2 months same appears to be happening on Tramadol. I was so happy thinking I found something to help me. 50mg Tramadol and some THC Edibles and I was doing pretty
I’ve read that augmentation on Tramadol is rare but I think I may be augmenting already. Did so on Recuip after about 8 months now after only 2 months same appears to be happening on Tramadol. I was so happy thinking I found something to help me. 50mg Tramadol and some THC Edibles and I was doing pretty
mmb8083
in
Restless Legs Syndrome
4 years ago
Should I be taking this.
Hi everyone I’ve had loads of advice from this site and I’m still seeking it. I’ll give you a quick synopsis of what I’ve been going through and where I am now. I have had RLS what seems like forever. I took Ropinirole for 10 years, went through augmentation, developed a gambling problem and managed
Hi everyone I’ve had loads of advice from this site and I’m still seeking it. I’ll give you a quick synopsis of what I’ve been going through and where I am now. I have had RLS what seems like forever. I took Ropinirole for 10 years, went through augmentation, developed a gambling problem and managed
Scattypatty
in
Restless Legs Syndrome
4 years ago
Increase in steroids?
I have upped my steroids from 2 to 3 with Docs permission. Now I am thinking of taking a bit more ! My John is now terminal with metastasised lung cancer to the brain and now spine. He is in a hospice for pain relief but I think when that is sorted he will have to leave. I would like him to come home
I have upped my steroids from 2 to 3 with Docs permission. Now I am thinking of taking a bit more ! My John is now terminal with metastasised lung cancer to the brain and now spine. He is in a hospice for pain relief but I think when that is sorted he will have to leave. I would like him to come home
5lupins
in
PMRGCAuk
4 years ago
TREATMENT ADD-ONS WEBINAR
Thursday 27th August, 5pm Stuart Lavery is a consultant gynaecologist at the Hammersmith Hospital and a senior lecturer at Imperial College in London. He has been an NHS consultant for 18 years, and also works in the private sector in Harley Street. His main research interests are IVF and fertility
Thursday 27th August, 5pm Stuart Lavery is a consultant gynaecologist at the Hammersmith Hospital and a senior lecturer at Imperial College in London. He has been an NHS consultant for 18 years, and also works in the private sector in Harley Street. His main research interests are IVF and fertility
DianeArnold
Administrator
in
Fertility Network UK
4 years ago
Update to current status
Hi everyone, Since joining this group I have learned a great deal about this debilitating condition that has been a part of my life for the best part of 20 years- thanks to all contributors. As an update, I thought I would share my current status. I was on 2mg’s ropinirole with very variable results
Hi everyone, Since joining this group I have learned a great deal about this debilitating condition that has been a part of my life for the best part of 20 years- thanks to all contributors. As an update, I thought I would share my current status. I was on 2mg’s ropinirole with very variable results
Earlyriser13
in
Restless Legs Syndrome
4 years ago
1
...
58
59
60
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
Restless Legs Syndrome
1451 results
Fertility Network UK
360 results
PMRGCAuk
135 results
View top 10 communities
Sort by
Most Relevant
Newest