Scleroderma & Raynaud's UK (SRUK)
6,792 members3,213 posts

Raynauds & Diagnosed Health Issues Questionaire What Do You Think?

I have read all of your posts and questions. I see many of the same issues I have, not one or two but many. Would this community like to see a check list questionnare all in one nice little package? I know I would. I am an exercise physiologist and published research author; I am interested in seeing it all in one table. We could all then use the results of our unoffical poll to talk with our own medical provider. If you are in, just reply and in the response list your diagnosed health problems like this--

Raynauds

Iritis

Dry Eye

Spontaneous Teeth Breakage

Numb Toes, Fingers, Ankles

Pain in toes, fingers, nose

I guess I will know if you are in if you click respond and put your list on the page...then I will comply the responses and create our own little check list for our group and others, in particular our doctors.

Thanks for stopping by & stay warm,

Coldtoes

29 Replies
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ps: I see typos in this question--sorry folks:) coldtoes

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Good idea if you are willing to do it. I find the occupation - exercise psysiologist fascinating and it reminds me that I must get my liist of hand and mouth exercises out and get on doing them again.

I have

Raynauds

Scleroderma

Calcification of tendons and ligaments - knees

Osteoarthritis - hips and neck

Sjorgens syndrome

Telagetasia

Acid reflux

Bowel problems

Bent/clawed fingers

In fact a typical CREST patient

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Thank you for the response Yorky. I will add your dx. to the list. Stay warm. coldtoes

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Hi!

I have Crest :

Raynauds/calcinosis in thumb, knees, nose /GERD/ talangactasia

Sjogrens

Hypermobility in joints

Anti mitochondrial antibody +ve (Primary Biliary Cirrhosis)

Osteoarthiritis

Vit D deficiency

Get vascular headaches occasionally when tired

Thanks

Lisa

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Lisa, Thank you for responding. I will add your dx. to the list. Depending on how quickly people respond the checklist will appear. Coldtoes

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Hi Lisa,

What do you mean by vascular headaches?

I have a pain in head and neck and have had for 6 weeks-no longer think it is just a stiff neck. pain can be bad.

x

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Hi

I think its a good idea too. I have

Raynauds / CREST

Scleroderma

Lung Fibrosis

Vit B12 Def

Bowel problems

Thank you

Sandra

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Dear Sandra, Thank you for answering this post. I see we have a lot to discover. In a week or two after all the dx. health issues are posted on this page I will use the "Suggest a Poll' option on this site and list all the dx. we have on the page. Let's see how it goes and stay warm:) Coldtoes

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I have been diagnosed with:

Limited cutaneous systemic scleroderma

Raynaud's

Autoimmune underactive thyroid

Dry eyes

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LynnCox, Thank you for sharing. Will leave this post up for a few weeks to gather as much information as possible before we take it to a suggested poll process.Stay warm, Coldtoes

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I have been diagnosed with:

Scleroderma

Sjogren's Syndrome

Raynaud Syndrome

Pulmonary Hypertension

Fibromyalgia

Gastroparesis

IBS

COPD

Acid Reflex

Severe Sleep Apnea

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Thank you Karenconnie for sharing the list of Dx. As noted, the big checklist will come forth in a few weeks and presenting to the site as a suggested POLL. Many thanks, stay warm, Coldtoes

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Good idea. I have the following:

Diffuse scleroderma w/overlapping features of lupus

pain in fingers, toes, wrists, knees, elbows, and shoulders

ruptured biceps

severe raynauds

calcinosis (in fingers and legs)

finger ulcers

tanglestisia(not sure of spelling)

headaches

reflux

bowel problems

difficulty swallowing

interstitial lung disease

Wow! I'm a mess! Trying to get pre-approved for a new prescription. Hope that helps some.

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Dear Cherylann, Thank you very much for sharing. Wishing you the best with your Rx. Stay warm, Coldtoes

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Hi

I have

Raynauds

Peripheral neuropathy

osteoarthritis

Sjogren's Syndrome

GERD

legmuscle weakness

Back pain

asthma

bronchiectasis

fibromyalgia

allergies

hypermobile knees and hips

Kathy

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Kathy, Thank you for responding to this post.Will post the checklist; poll in a few weeks. Will suggest the poll and see where it leads us. Stay warm, Coldtoes

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Hey there folks, some similar ones to the other people on here:

Raynaud's

PCOS

2 Shattered teeth/ dry mouth

Bowel issues

Vitamin D Deficient

Asthma

Allergies

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MissMatryona, thanks for adding your list to the list. You are right the dx. we have in common are beginning to 'show'. I will let this list ride a while longer and then request a poll of the whole site. Stay warm, Coldtoes

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In order of diagnosis -

underactive thyroid

Primary Biliary Cirrhosis

Crest syndrome without calcinosis until very recently

Lichens sclerosis

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Thank you Louislou for responding to this post, much appreciated. I am looking forward to getting this information into the spread sheet to move forward with the poll. Stay warm,

Coldtoes

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GOOD MORNING EVERYONE FOLLOWING THIS THREAD:

I see new posts/questions regularly that relate to this thread of course.

If you are responding to other questions onsite would you be so kind as to suggest that they also visit this thread and share their information?

Trying to connect the dots so that we have a few more responses before we create the suggestion to POLL the entire group.

Thank you and stay warm,

Coldtoes

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Hiya this a good idea, would have replied sooner but not long been back from my holiday, then became ill. I have the following:

Raynauds,

Mild/Allergy related Asthma,

Hayfever,

Epitaxis (nosebleeds),

Really clumsy - accident prone .

Strained the ligaments - hip area and shoulder,weak joints in my knee, strained my right side - not all doctors agree with this one.

good luck with your research!

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Thank you for the response bookworm. Hopefully this list as it is shaping up will serve this online community in some fashion.

All the best to you, stay warm!

Coldtoes

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hi i have

Raynauds all over

Dry Eye

Spontaneous Teeth Breakage

Numb Toes, Fingers, Ankles

Pain in toes, fingers, nose

Reply

ibs,food allergies,bipolar,ultra clumsy - accident prone

fatigue, sleep problems

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Thank you Fairy Goddess for sharing. Look for the POLL to come out in a few more weeks and then we will all go back in there and fill in the blanks! Stay warm, Coldtoes

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Hi Coldtoes( great name- apt!)

I have Scleroderma and Raynauds

tight skin

contracted tendons- bent over,crooked fingers and other joints

restricted movement in elbows, shoulders and legs, toes and tongue!

itchy skin(back)

derma fibroma

increased melanin- constant tan!

digital ulcers and ulcers can occur on elbows and ears

small mouth- scleroderma has drawn it in and restricted movement

tummy upsets- diarrhea/constipation (ibs/food allergies)

pins and needles and numbness in feet

acid reflux

heartburn

some difficulty swallowing

fatigue

It's a fantastic list!

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Dear HelenL, thank you for your response. I will be compiling the 'poll' list in a week or so and send it in. Look for a poll from the site should they decide to run it. In the meantime, stay warm.

Coldtoes

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Hi everybody...if you think about it please ask others on this portal to sign in here if they wish. I am going to compile all of our responses and send it to admin. to ask for them to conduct a site POLL.

Thank you everybody for your input and participation! Stay Warm!!

Coldtoes

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