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Revesz syndrome
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Just been told i am hyper-mobile. hEDS? This might explain my chronic fatigue / post exercise malaise and more!
Hi EDS forum! For most of my adult life if have suffered with poor sleep, chronic fatigue and severe physical exhaustion after what might be considered normal exercise. I go mountain biking with friends who the next day would be feeling amazing but i am totally debilitated, limbs shaking/buzzing, can
Hi EDS forum! For most of my adult life if have suffered with poor sleep, chronic fatigue and severe physical exhaustion after what might be considered normal exercise. I go mountain biking with friends who the next day would be feeling amazing but i am totally debilitated, limbs shaking/buzzing, can
TranceW1974
in
Ehlers-Danlos Support UK
5 years ago
PVT or PAD, Over the past 5 yrs. I've notice pain and heaviness in my legs and the last few weeks I can barely walk.
I went to my Dr. and she told me I was out of shape. I said he'll no. I know I am out of shape, but you know when something is not right. So, I told her I was going to see the vein Dr. That afternoon. Well sure enough I have dilated veins in my legs and they are going to do mapping on them in about a
I went to my Dr. and she told me I was out of shape. I said he'll no. I know I am out of shape, but you know when something is not right. So, I told her I was going to see the vein Dr. That afternoon. Well sure enough I have dilated veins in my legs and they are going to do mapping on them in about a
Seehowyour
in
Restless Legs Syndrome
5 years ago
Made me laugh!
Picked up my grey and white ball of paired gloves and set off for my run. Phone sorted in my belt, I went to put on my gloves, only to find that I'd picked up socks! Oh, well, you can cover your hands with socks - until you need to get a hanky out of a pocket!
Picked up my grey and white ball of paired gloves and set off for my run. Phone sorted in my belt, I went to put on my gloves, only to find that I'd picked up socks! Oh, well, you can cover your hands with socks - until you need to get a hanky out of a pocket!
Runawaytrainer
Graduate
in
Couch to 5K
5 years ago
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Opiate study
This is a link to the first year of a study of rls patients taking opiates for relief. I have obtained permission from the administrators to share this here. Interesting to see the place of Fentanyl and methadone in usage figures. Cheers. https://partners.us20.list-manage.com/track/click?u
This is a link to the first year of a study of rls patients taking opiates for relief. I have obtained permission from the administrators to share this here. Interesting to see the place of Fentanyl and methadone in usage figures. Cheers. https://partners.us20.list-manage.com/track/click?u
Madlegs1
in
Restless Legs Syndrome
5 years ago
OTD 13dp5dt BFN
I tested yesterday as I wanted the weekend to process things. I was sure it hadn’t worked, and I was sadly correct. I’ve not slept at all well this week and the anxiety really got to me. I just knew when we went for transfer our chances were so slim. The embryo had just reached a blastocyst but was
I tested yesterday as I wanted the weekend to process things. I was sure it hadn’t worked, and I was sadly correct. I’ve not slept at all well this week and the anxiety really got to me. I just knew when we went for transfer our chances were so slim. The embryo had just reached a blastocyst but was
Wrighty82
in
Fertility Network UK
5 years ago
Diagnosed with Joint Hypermobility Syndrome but I’m not sure.
Hi everyone. I’m looking for your thoughts. I have been suffering from considerable pain for a year now. I have alternating pain in my buttocks, pain in my left shoulder and at various other points in my back. I have nerve pain in one leg that travels to my foot. After a lot of physio both paid for and
Hi everyone. I’m looking for your thoughts. I have been suffering from considerable pain for a year now. I have alternating pain in my buttocks, pain in my left shoulder and at various other points in my back. I have nerve pain in one leg that travels to my foot. After a lot of physio both paid for and
browny52
in
Ehlers-Danlos Support UK
5 years ago
The Silly Side: More Tasty Morsels from the Small Ads. Well, it helps to pass the time when under the influence of the DF... ;-)
Greetings All Just when you thought (er, hoped?) I'd gone quiet here, I have in fact been quite busy behind the scenes. Well, yep: the dreaded DF does has its drawbacks. But, as they say, there are 2 sides to every coin. Here are the latest Gems spotted in the small ads... 1973 Mk.1 Batmobile. 1
Greetings All Just when you thought (er, hoped?) I'd gone quiet here, I have in fact been quite busy behind the scenes. Well, yep: the dreaded DF does has its drawbacks. But, as they say, there are 2 sides to every coin. Here are the latest Gems spotted in the small ads... 1973 Mk.1 Batmobile. 1
markbenjamin57
in
PMRGCAuk
5 years ago
Calling All USA Suffers This is Your Chance to Help Us All!
Hi, I know there are a number of people on here from the US and there is some very important legislation about to be made that could affect us all or at the very least those of us with Refractory RLS where nothing BUT opioids will help. Or even if this isn’t you and you know a fellow sufferer like this
Hi, I know there are a number of people on here from the US and there is some very important legislation about to be made that could affect us all or at the very least those of us with Refractory RLS where nothing BUT opioids will help. Or even if this isn’t you and you know a fellow sufferer like this
Not-methadone-addict
in
Restless Legs Syndrome
5 years ago
Ups and downs
Sorry if this post appears twice don't think first one went. I was asking if it is too much to expect to feel 100% all of the time whilst taking pred. Currently on 12.5 for last 3 and half weeks. 15 for three weeks before. Am now pretty much pain free but some days my muscles ache and feel sore and I
Sorry if this post appears twice don't think first one went. I was asking if it is too much to expect to feel 100% all of the time whilst taking pred. Currently on 12.5 for last 3 and half weeks. 15 for three weeks before. Am now pretty much pain free but some days my muscles ache and feel sore and I
Healthworrier
in
PMRGCAuk
5 years ago
Advice please ✈️
Im currently 31 weeks pregnant and after a long road to get here I’m getting myself in such a dilemma. My best friend gets married in Ireland roughly 8 weeks after I’m due 🤞🏻I’ve been putting off booking the flights for months because I’m so anxious of booking for a baby that isn’t yet safely here.
Im currently 31 weeks pregnant and after a long road to get here I’m getting myself in such a dilemma. My best friend gets married in Ireland roughly 8 weeks after I’m due 🤞🏻I’ve been putting off booking the flights for months because I’m so anxious of booking for a baby that isn’t yet safely here.
E_05
in
Pregnancy and Parenting Support
5 years ago
Feel like being ignored by Rheumatologist and GP not sure what to do next?
Hi guys, I posted here a while back because I had suspected EDS (probably Type 3), as I slipped a disc at 15 from stopping suddenly at the bottom of the stairs, my ligaments in my ankle are very loose and I have a lot of the other symptoms and commodities. I also have Vocal Cord Dysfunction Disorder
Hi guys, I posted here a while back because I had suspected EDS (probably Type 3), as I slipped a disc at 15 from stopping suddenly at the bottom of the stairs, my ligaments in my ankle are very loose and I have a lot of the other symptoms and commodities. I also have Vocal Cord Dysfunction Disorder
emilyhedgehog
in
Ehlers-Danlos Support UK
5 years ago
Family with vascular EDS but I have hypermobility...
Hello So on my mother's side there is Vascular type EDS unfortunately. My brother, who sadly passed away from a rupture inherited it from my mum who is thankfully still with us at a pretty good age of 62 and 2 pregnancies which seems like a miracle with this terrible defect. Anyway I wanted to ask
Hello So on my mother's side there is Vascular type EDS unfortunately. My brother, who sadly passed away from a rupture inherited it from my mum who is thankfully still with us at a pretty good age of 62 and 2 pregnancies which seems like a miracle with this terrible defect. Anyway I wanted to ask
Dumplinglife19
in
Ehlers-Danlos Support UK
5 years ago
Madopar - does anyone take it?
I was on Pergolide for 18 years. Wonderful. Cured my restless legs until they took it off the market. Now my neurosurgeon has given me Madopar which doesn’t touch the problem. Help!
I was on Pergolide for 18 years. Wonderful. Cured my restless legs until they took it off the market. Now my neurosurgeon has given me Madopar which doesn’t touch the problem. Help!
Jeverleybane
in
Restless Legs Syndrome
5 years ago
A New Thyroid Subset For Chronic Fatigue Syndrome (ME/CFS)? The Low T3 Syndrome Group by Cort Johnson www.prohealth.com
Do problems with the gas pedal of the body – the thyroid – play more of a role in ME/CFS than most doctors think? By Cort Johnson • www.ProHealth.com. March 13, 2019 I found this to be a really interesting well written article referencing other aspects of low T3. https://www.prohealth.com/library/new-thyroid-subset-chronic-fatigue-syndrome-cfs-low-t3
Do problems with the gas pedal of the body – the thyroid – play more of a role in ME/CFS than most doctors think? By Cort Johnson • www.ProHealth.com. March 13, 2019 I found this to be a really interesting well written article referencing other aspects of low T3. https://www.prohealth.com/library/new-thyroid-subset-chronic-fatigue-syndrome-cfs-low-t3
mourneadventurer
in
Thyroid UK
5 years ago
Diagnosis and support
Hello I am diagnosed with Behcet’s Syndrome and ‘primary hyper mobility syndrome’. I have excellent care and support from a specialist centre for Behcet’s but don’t know it understand hyper mobility that well despite having the diagnosis for over 7 years. The rheumatologist who diagnosed retired after
Hello I am diagnosed with Behcet’s Syndrome and ‘primary hyper mobility syndrome’. I have excellent care and support from a specialist centre for Behcet’s but don’t know it understand hyper mobility that well despite having the diagnosis for over 7 years. The rheumatologist who diagnosed retired after
VickiOliver
in
Ehlers-Danlos Support UK
5 years ago
Short femur at 20 week scan
Hi everyone We had our 20-week scan today. Everything was fine except femur length which was below the 3rd centile. We were sent up to the FMU and a midwife said we will need to go back for another scan with a consultant so baby can be measured again. They’ve also taken some bloods. She said it could
Hi everyone We had our 20-week scan today. Everything was fine except femur length which was below the 3rd centile. We were sent up to the FMU and a midwife said we will need to go back for another scan with a consultant so baby can be measured again. They’ve also taken some bloods. She said it could
Star15
in
Pregnancy and Parenting Support
5 years ago
My 5 Documentary
I'm writing this after seeing the documentary today and felt heart sorry for John, sema and Terry, I have suffered from restless legs for about 20 years and GPs have always been clueless about the condition. My legs got so bad recently they were jumping so mentioned again about the condition to a different
I'm writing this after seeing the documentary today and felt heart sorry for John, sema and Terry, I have suffered from restless legs for about 20 years and GPs have always been clueless about the condition. My legs got so bad recently they were jumping so mentioned again about the condition to a different
Bengal5
in
Restless Legs Syndrome
5 years ago
Maraijuana / Cannabis ?
Has anybody out there tried taking CBD oil for RLS? It has had very good reviews for a whole bunch of other problems. There is a drug called Epidiolex that is prescribed for Epilepsy which is cannabis based. Also available in Holland there is CBD oil containing THC which might be more effective. Availability
Has anybody out there tried taking CBD oil for RLS? It has had very good reviews for a whole bunch of other problems. There is a drug called Epidiolex that is prescribed for Epilepsy which is cannabis based. Also available in Holland there is CBD oil containing THC which might be more effective. Availability
Barnaby97
in
Restless Legs Syndrome
5 years ago
Combined pill levest
Hiya, I've been put on levest contraception and I feel weird for past few days like not myself having bad mood swings and I have had sickly stomach constantly and I also feel like something is lodged in my chest or something is stuck is this normal or should I go back to my GP?
Hiya, I've been put on levest contraception and I feel weird for past few days like not myself having bad mood swings and I have had sickly stomach constantly and I also feel like something is lodged in my chest or something is stuck is this normal or should I go back to my GP?
Raksha125
in
BASHH
6 years ago
Headache pills have caffeine.
I use excedrin for tension headache daily and at least 4 of them. They are loaded with caffeine but the ones without caffeine really don’t work. Is the caffeine a major problem here. I am going to try curcumin.
I use excedrin for tension headache daily and at least 4 of them. They are loaded with caffeine but the ones without caffeine really don’t work. Is the caffeine a major problem here. I am going to try curcumin.
Aleish
in
PMRGCAuk
5 years ago
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