Posts - Scleroderma & Raynaud's UK (SRUK) | HealthUnlocked

Scleroderma & Raynaud's UK (SRUK)

10,844 members • 5,412 posts

All posts for March 2018

Systemic sclerosis and secondary raynauds and sun

Hi guys. I was diagnosed with systemic sclerosis and secondary raynauds Christmas time and am very lucky as my husband booked a few days away in the warmer...

Hi guys. I was diagnosed with systemic sclerosis and secondary raynauds Christm...

Sylviaherring

•6 years ago

5 Replies

Restricted Shoulder movement

Hi everyone - just wondering does any one have restricted shoulder movement eg Difficult to lift your hands on your head and above. Infact even behind your...

Hi everyone - just wondering does any one have restricted shoulder movement eg ...

naila_007

•6 years ago

10 Replies

Stem Cell Transplant

I've just been watching the BBC new and they were talking about a relatively new treatment for MS that kills off your immune system with chemo and then...

I've just been watching the BBC new and they were talking about a relatively new...

AMDP

•6 years ago

19 Replies

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Raynauds?

Hi. I kind of never look into forums, and such places, but I am tired. Literally tired. I think I do have Raynauds. All started last end of August / start of...

Hi. I kind of never look into forums, and such places, but I am tired. Literally...

Miks84

•6 years ago

15 Replies

Raynaud's

Hi , I joined because I believe I have Raynaud's Phenomenon........... undiagnosed but suspected for years.............. always rugged-up and cold, fingers and...

Hi , I joined because I believe I have Raynaud's Phenomenon........... undiagnos...

BriZeee

•6 years ago

2 Replies

Me again 😂

I’ve had excruciating pain in my neck and shoulders, more the left side for two weeks now and I’ve been feeling so fatigued etc. It’s now so severe I went to...

I’ve had excruciating pain in my neck and shoulders, more the left side for two ...

JazPont

•6 years ago

16 Replies

Found a venue for meeting in Birmingham, who wants to come?

Hi Folks, after seeing a couple of places yesterday (Friday), I think I've found somewhere that is quiet enough to speak/chat and be heard but busy enough to...

Hi Folks, after seeing a couple of places yesterday (Friday), I think I've found...

avtargill31

•6 years ago

36 Replies

Confusion after Iloprost confusion???

I completed a weeks Iloprost infusion on 16 February. This was my second admission, the first being last October. I noticed after each treatment I was affected...

I completed a weeks Iloprost infusion on 16 February. This was my second admissi...

linda-l

•6 years ago

5 Replies

Confusion after Iloprost confusion???

I completed a weeks Iloprost infusion on 16 February. This was my second admission, the first being last October. I noticed after each treatment I was affected...

I completed a weeks Iloprost infusion on 16 February. This was my second admissi...

linda-l

•6 years ago

1 Reply

My golden ticket!

My gosh I have never been so excited to receive a hospital appointment 😂 I spoke to Dr Paulings secretary the other day, they finally received a letter of...

My gosh I have never been so excited to receive a hospital appointment 😂 I sp...

JazPont

•6 years ago

12 Replies

ADD maybe?

Hi, i have a question as to if anyone else has this happen to them. I'll be sitting in bed and suddenly feel as if there is electricity shooting through my...

Hi, i have a question as to if anyone else has this happen to them. I'll be sitt...

Chan56

•6 years ago

6 Replies

Does anyone experience hot, red, throbbing pain in hands when warm or active? I’m desperate for any info on this.

Im desperate! I’ve been experiencing raynauds for a couple years now but lately my hands get extremely red, hot, throbbing and feel like they’re going to burst...

Im desperate! I’ve been experiencing raynauds for a couple years now but lately ...

Sthomas1120

•6 years ago

13 Replies

Any advice with drugs?

Hi, I am new here. I have been diagnosed recetly, but having the symproms for a while. Muscle pain in hand and swallowing sometimns is difficult. Does anyone...

Hi, I am new here. I have been diagnosed recetly, but having the symproms for a ...

Marta40

•6 years ago

2 Replies

Just taking it 1 day at a time! But GOD🤗

Hi. I have recently been diagnosed with limited scleroderma that is composed of CREST syndrome and Raynauds phenomenon. I am coping better but still have...

Hi. I have recently been diagnosed with limited scleroderma that is composed of ...

Mecca4lif

•6 years ago

4 Replies

Next joke.......

So there is STILL confusion or lack of communication regarding my funding to Bath! I had a letter this morning from Bath stating I’d been taken off the...

So there is STILL confusion or lack of communication regarding my funding to Bat...

JazPont

•6 years ago

7 Replies

Coping with Raynauds and Erythromelalgia

Hi my name is Britty has anyone else tried dotteria capsules?

britty12

•6 years ago

1 Reply

Live Chickenpox Vaccination

Yikes! My granddaughter just received a live chickenpox vaccination. She lives with me. I have never had chickenpox, although all three of my children had it...

Yikes! My granddaughter just received a live chickenpox vaccination. She lives w...

Intimeslikethese

•6 years ago

4 Replies

tiredness and low energy

l have Reynaud's phenomenon and coped has best l could with it all my life, trying all different drugs from my doctor only being able to stay on them short...

l have Reynaud's phenomenon and coped has best l could with it all my life, try...

Liz2beth22

•6 years ago

9 Replies

Trying to set up a face to face group meetings in Birmingham

I'm going to see potential places for suitability in Birmingham city centre this Friday 16th March 2018. I'm looking at either the Dragon inn (weatherspoons),...

I'm going to see potential places for suitability in Birmingham city centre this...

avtargill31

•6 years ago

7 Replies

Travel Insurance for systemic sclerosis?

My daughter is planning a holiday soon for my daughter and myself ...I have systemic sclerosis,which has damaged my lungs so I would need travel insurance for...

My daughter is planning a holiday soon for my daughter and myself ...I have syst...

marilynmcl

•6 years ago

4 Replies

Scleroderma renal crisis

Hi, I'm 23 and I'm currently in Royal Free's kidney unit after a check up 4 weeks ago. Turns out i had a chest infection that turned into pneumonia and my...

Hi, I'm 23 and I'm currently in Royal Free's kidney unit after a check up 4 week...

Redoralive

•6 years ago

12 Replies

Raynauds getting worse

Hi I’ve had Raynauds for a while now but it seems to be getting worse each year. Obviously this year has been colder than most but I’ve found myself...

Hi I’ve had Raynauds for a while now but it seems to be getting worse each year....

Jooles34

•6 years ago

8 Replies

Pain 3 years after open lung biospy

Three years ago this month I had an open lung biopsy done by a Thorasic surgeon. I am still having pain on the side of my ribs where they went into my long to...

Three years ago this month I had an open lung biopsy done by a Thorasic surgeon...

Jmrose

•6 years ago

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Diagnosed with diffuse cutaneous scleroderma and Raynaud's

Hi, I'm Donna

Donnalw72

•6 years ago

5 Replies

Looking for information and support system

I got diagnosed with diffuse cutaneous scleroderma in October 2017, I'm currently on cyclophosphamide and just finished a course of iloprost. I'm just looking...

I got diagnosed with diffuse cutaneous scleroderma in October 2017, I'm currentl...

Donnalw72

•6 years ago

23 Replies

loss of fat pads on soles of feet

hi has anyone suffered the loss of fat pads on soles of feet or has anyone tried derma fill to fill the fat pads ?

hi has anyone suffered the loss of fat pads on soles of feet or has anyone tried...

Gran54

•6 years ago

33 Replies

Hot off the press

Hi guy's & gal's, there's a new self-help book published for people with debilitating but invisible conditions a very good...

Hi guy's & gal's, there's a new self-help book pub...

amd21

•6 years ago

2 Replies

Verapamil anyone? For scleroderma. And Rayna...

Is anyone on Verapamil?? I've taken a half for about a week. I've noticed it's hard to even get out of bed. I'm so tired. Also.. Dizzy spells ia it from the...

Is anyone on Verapamil?? I've taken a half for about a week. I've noticed it's h...

Susanissufferingtoo

•6 years ago

2 Replies

Is it normal to still feel stiff still? 😓 I.hate this

Hi, I'm new to this website. I just got diagnosed Feb 21 this year. I also have fibromyalgia and that was enough! I'm also on oxygen. I have copd but...

Hi, I'm new to this website. I just got diagnosed Feb 21 this year. I also have ...

Susanissufferingtoo

•6 years ago

5 Replies

Skin Question

I have read that people with systemic sclerosis should avoid hot baths.... why is this ? I’ve read a lot to avoid it but can’t find a reason why? Obviously I...

I have read that people with systemic sclerosis should avoid hot baths.... why i...

JazPont

•6 years ago

14 Replies

Posts - Scleroderma & Raynaud's UK (SRUK) | HealthUnlocked

Scleroderma & Raynaud's UK (SRUK)

All posts for March 2018

Systemic sclerosis and secondary raynauds and sun

Restricted Shoulder movement

Stem Cell Transplant

Raynauds?

Raynaud's

Me again 😂

Found a venue for meeting in Birmingham, who wants to come?

Confusion after Iloprost confusion???

Confusion after Iloprost confusion???

My golden ticket!

ADD maybe?

Does anyone experience hot, red, throbbing pain in hands when warm or active? I’m desperate for any info on this.

Any advice with drugs?

Just taking it 1 day at a time! But GOD🤗

Next joke.......

Coping with Raynauds and Erythromelalgia

Live Chickenpox Vaccination

tiredness and low energy

Trying to set up a face to face group meetings in Birmingham

Travel Insurance for systemic sclerosis?

Scleroderma renal crisis

Raynauds getting worse

Pain 3 years after open lung biospy

Diagnosed with diffuse cutaneous scleroderma and Raynaud's

Looking for information and support system

loss of fat pads on soles of feet

Hot off the press

Verapamil anyone? For scleroderma. And Rayna...

Is it normal to still feel stiff still? 😓 I.hate this

Skin Question

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