Unsure of Raynauld's diagnosis , thoughts very much appreciated

[smilesb]

Hi there, I'm new to this group.... 47 yr old male. living in the uk

6ish years ago my hands started going cold when surfing... sometimes blue

I was sent to cardiologist who then sent me to lupus specialist who then sent me back to my local Rheumatology dept.

My bloods were normal except for a marginally elevated ANA level. I had a nail bed capillaroscopy which was ok too. Nothing else to note so i was marked down as 'primary'. So i'm being checked out every 2 yrs re bloods

all the above took a few years .. meanwhile my feet joined in the party and my symptoms changed:

I never get blue hands , just cold fingers and toes with pale digits and 'flushed pink hands from knuckles back. This happens on any minor temp change - walking btwn rooms at home for example

I also have constant tingling in my hands and feet which is worrying me. I have taken b12 meds hoping it was that but it seems to be a little worse over time

So i'm confused if i have Raynaulds of something else.

A local private 'functional?' doctor thought my issue was body temp so put me on thyroid meds in an attempt to raise my body temp (which was 35 to 36C) ..... that felt really positive and i felt sure my symptoms improved... but only for a short while and i'm back to the same situation again

I'd really appreciate and thoughts or advice from those with more experience on this group.

Many thanks in advance

[Jmrose]

To me it sounds like Raynauds, as I have same symptoms. My initial rheumatologist could not figure out what was going on so I went to see someone else, another rheumatologist and got my diagnosis. Good luck.

[smilesb in reply to Jmrose]

Thanks Jim... was there anything you do to help with the symptoms? Really interested in finding ways to manage things better

[Jmrose in reply to smilesb]

I keep my hands and feet warm. I'm lucky since I live in Florida I'm not exposed to extreme temperatures. When I did live in the North country I used pocket warmers for my hands. My doctor put me on medication For my scleraderma and also daily aspirin. I also use nitroglycerin cream that helps to open up the blood capillaries and let the blood flow to the extremities.

[Nisrinita40 in reply to Jmrose]

Hello Jmrose, I have been diagnosed with limited systemic sclerosis with Raynaud disease as my symptoms at the moment are white fingers in the cold and red/blue toes. I live in London and I just turned 40 years old. I wanted to ask you as you have the same conditions as me if going to warmer area has helped your condition and how long have you been with this condition? I would expect warm weather won’t cause the Raynaud symptoms but I’m more worried about the scleroderma progression to other organs. Your advice would be really great. Thank you.

[Jmrose in reply to Nisrinita40]

I was diagnosed in 2010, at which time I moved to Florida. Prior to my diagnosis I lived up north where it is cold and I suffered miserably. Yes...warm weather has helped tremendously. I do need to be mindfull of air conditioning if it gets too cold indoors, but that is also good for my electric bill...LOL As far as my scleroderma I have been on medication since 2016 and so far it has not progressed. I take nifedipine, hydroxychloroquine, mycophenolate, prednisone, and baby aspirin. I also use Nitro-Bid nitroglycerin ointment on my fingers and around my ankles. I hope this helps you 🙏🏼

[Nisrinita40 in reply to Jmrose]

Hi, Cheers for getting back to me. It is good to know that warm weather helps which I may seriously do and leave London. You are on many medications since 2016, is it because your Raynaud symptoms gotten worse or your consultant asks you to avoid progression? I’m going to be monitored yearly now and no idea for how long to see how it goes, I really hope it will be just limited to Raynaud as I’m terrified every time I read about it and try to ignore the whole situation. Take care and stay well.

[Jmrose in reply to Nisrinita40]

Yes my symptoms got worse which is why I went to a rheumatologist . Raynauds can definitely be maintained by keeping a warm temperature and atmosphere. I did it for a very long time as I had the it for about 20 years. in the beginning it was very and manageable on my own.

[frannydavis57]

Hello. I have Raynauds secondary to Scleroderma. What I find really helps is keeping my core temperature up by wearing lots of layers. Vest, thermal top with jumper on top. Always wear long johns under my jeans. Not pretty but seems to help! I also take sildenafil 100mg per day. There are other drugs (vasodilators) available so would suggest a chat with your GP or rheumatologist.

[elprof57]

Do you have swollen hands?

[smilesb in reply to elprof57]

hi there. i don't have any swelling just tingling lots and white fingers + flushed hands above the knuckles with any temp change. Handling anything cold isn't very nice. Thanks for your interest

[elprof57 in reply to smilesb]

I have had scleroderma in a begnin form for 10 years. From what l know and from what I've been told, when accompanied with continuous swolleness of hands ( such as mine) Raynaud's is secondary to another condition and a person is almost certainly in a state of Systemic Sclerosis of Connective Tissues, ie scleroderma. ANA blood testing will then give a definitive answer. All the best.

[SmilesBarnaby in reply to elprof57]

Thanks for this elprof57I had very slightly elevated ANA but the rhemy seemed to think it still could be primary. My capilleroscapy was all ok too.

That was 18 months ago though and I’ve managed to convince them I need a new blood test so I’ll go for that this week.

Is there a specific marker or sign within the ANA test that shows up scleroderma that the doctor can look for? I’m totally new to this really.

My hands and feet feel tingly on the upper side and numb ish on the digits. Kind of like the feeling I used to get when my hands have been too cold and you warm them up too fast. Tingling and a bit sore. Over the past weeks this seems to have been getting worse.

Since this all started I’ve been feeling my hands look older and more wrinkled but perhaps I’m just getting older !

Also my big toes ache but I’m not sure what that’s about

I’m still hopeful it’s primary as the scleroderma diagnosis scares me tbh as it seems like it can be pretty tough to live with

Thanks so much for sharing our experience

[elprof57 in reply to SmilesBarnaby]

Dear SmilesBarnaby. I am a 63 yo male from northern Italy. I discovered my Raynaud's while l was driving to work in Nov. 2011.l noticed that the upper half of my right hand had turned pale and sort of yellowish.At the same time l had a tingling feeling in the same hand. My doctor told me have blood testing so as to ascertain if l was positive for ACA. It turned out that I was and l have subsequently had limited cutaneous scleroderma, fortunately in a mild form..... so far. My most recent blood tests were perfect. The only problem is that I have anti centr mere antibodies in my blood. This disease affects people in various ways. As far as Raynaud's is concerned it's specificity lies in the fact that it usually affects one hand more than the other. The hand affected is not totally affected. Thumb and pinkie are rarely struck. Raynaud's occurs when the environment is cold,ie when the temp. dips below 10 deg. or when your hand touches cold objects. ie. food products stored in freezers.Another important thing to note is that in a Scleroderma patient Raynaud's affects the whole body. When you suffer a severe Raynaud's attack the pain you feel in your hands affects you as a person and your body as a whole. You just don't feel well. I can assure that during harsh cold spells we Scleroderma sufferers stay indoors. In a scleroderma sufferer Raynaud's very often causes digital ulcers on your fingertips. They are similar to very small cuts and can take about 2 or 3 months to heal. A nail capillerascopy is a means which determines the extent of Raynaud's. You say that yours gave a satisfactory response.This, together with the fact your hands are not swollen, makes me believe that your condition seems to be closer to primary Raynaud's. All the best.

[SmilesBarnaby in reply to elprof57]

Than you elprof57 for your valuable information and taming the time to reply. Much appreciated. My Raynaulds is the same on both hands and also effects the whole hand

It also is both feet equally and all toes.

I first started noticing the raynaulds winter surfing in the Uk. Freezing temps but in now seem to have it all the time.

Small temp changes can set it off.

I would not call it an attack really. More so my fingers go white and loose sensation and then they quite rapidly come back when warm. No blue etc.

Of late more and more tingling all the time in hands and feet along with what I can only describe as ‘flushed’ hands where my whole hands seem very red at times when not cold. Almost feel hot but it doesn’t last that long.

I wrap up warm in winter and as long as hands are warm I’m ok in myself and tbh even if they go totally bum and cold and don’t feel anything in my body. I still surf etc with v thick boots and gloves on

It sounded like there is a specific analysis of the ANAs

I’ve only had the message that my ANAs are marginally raised - 18 months ago. No mention of specifics at all or analysis of the ANAs themselves. Is that something I should enquire about ?

Thanks again so much for your insights and help

I imagine N Italy is beautiful. Hopefully warm too.

All the very best

[tanya1981 in reply to SmilesBarnaby]

Hi SmilesBanaby, I’ve been living with relatively Mild systemic sclerosis and bad secondary Raynauds for about 5 yrs now. I have similar to your Raynauds symptoms and have been using ginkgo biloba to control them a bit. I also regularly take vitamin C and Vitamin D. I also use electric hand warmers and electric gloves when needed. As to your tests, I suggest you do for specific scleroderma related tests (anti- centromere, scl70, etc in addition to the ANA if you’re worried. You can do that privately if the GP resists to offer them.

Best of luck!

[elprof57 in reply to SmilesBarnaby]

Dear Barnaby. I am inclined to think yours is not a case of a person who suffers from scleroderma. In any case take blood tests in order to determine the presence of anti- nuclear antibodies, the Erythrocyte sedimentation rate and C-reactive protein content. By the way we are going through a cold April here in Italy. March was warmer. Just as well l pruned my olive trees then. If l were to prune them now l would have a bout or two of Raynaud's for sure. All the best and stay tuned to the site.

[SmilesBarnaby in reply to elprof57]

Hi there elfprof57Thanks again for you help and advice

Those olive trees sound wonderful!

Yum and such incredible trees too

Enjoy!

All the very best

[Nisrinita40 in reply to elprof57]

Hello, I have been diagnosed with the same condition as you and as you mentioned you are with this condition for 10 years now, did your symptoms change or it is still associated with Raynaud syndrome only? I’m worried about the progression to affect other organs. Thank you

[elprof57 in reply to Nisrinita40]

Thank you for your enquiry. After 9 and a half years from diagnosis up till now l have one doubt as regarding progression of the disease involving internal organs. Lower urinary tract symptoms and bladder over activity can be related to scleroderma, regardless of sex. I am having blood and urine tests taken next week in order to determine the presence of any disorder. Keep well.

[Nisrinita40 in reply to elprof57]

Hello,Thanks for coming back to me. I really hope nothing serious in your coming blood test and it is just small infection that can be treated with antibiotics. Please do let me know how it goes. I’m still in shock about my diagnosis as I have never imagined to get this rare disease especially I’m very healthy (perfect weight, healthy diet, never smoked or drank alcohol(don’t like the taste LOl) and exercise regularly) not sure what I did wrong to get this but it seems we are just unlucky and that we can’t control :(. I did have for quite some years these symptoms (white hands in cold or freezing toes) and never thought of anything until now when my toes got swollen and didn’t come back normal until now since January (the swilling is better but still not the original size). My Gp said chilblains for 4 times and then I got fed up and went privately and got diagnosed in one week after 23 blood test. Not sure if it is good to know about it or should I just ignored it and be in denial :(. I’m seeing the consultant again this Thursday to discuss the last kidney blood test check and heart ECHO. Take care and stay well.

[elprof57 in reply to Nisrinita40]

Thank you for your best wishes.They are much appreciated. When a disease arises, often there is little we can do. I also have led a fairly healthy life style. Eg. I have never smoked. But nonetheless l have scleroderma, fortunately in a begnin form. I also was in a state of shock when l started reading about this disease but it must be said that it affects people in different ways. As far as the typical symptoms of the disease are concerned, such as the occasional buckling of the knees, feeling of a lump in my throat, the one or two digital ulcers that crop up in winter and the occasional burning feeling in my lungs when l go from a warm environment to a cold one l can say quite frankly that the give any problems at all. Keep well and stay tuned to site. PS. I think your GP did not see any significant signs of Raynaud's in your hands. If he had seen a typical sign ie very pale or yellowish finger tips in strong contrast to the coloring of the rest of your hand, l think he would have sent you to a rheumatologist.

[Fishie1]

I also have Raynauds secondary to Scleroderma. I had gone to GP and was told only Raynauds but primary doesn't usually start mid life. I also developed reflux issues which is when they then sent me to rheumatologist for tests. Moving from room to room is a problem as it is all about keeping core temperature steady. I had problems in vegetable department of supermarket.

Layers are the best advice and remember you lose so much heat from your head.

Good luck.

[smilesb in reply to Fishie1]

thanks for this Fishie1. I have been worried about 2ndary.... I've been in the rheumatology loop for the last 4 yrs and the bloods seem positive so i keep hoping that its primary but who knows. I have some more bloods due soon - i need to pop to the hospital for them next week so i'll be looking to see what, if anything has changes in the past 24 months or so I was measuring my core temp as mentioned above and found that my temp would drop loads when outside. perhaps it always did. I wonder if others have this issue. maybe i should post separate Q. thanks again !

[Sanmateogirl107]

prazosin 1 mg ask the doctor about for pain i take wild lettuce extract ebay. let me know if it works for you. hugs for a better day love julie. p.s make noise ask for pain specialist.

[smilesb in reply to Sanmateogirl107]

thanks Julie i'll have a look into prazosin and the wild lettuce and let you know

[Starmarrs]

Hello! Alot of our symptoms, they say are permanent. I came across Dr. Joe Dispenza and have been studying his program for healing. The testimonies are incredible. I do not agree with my diagnosis and will not believe that I "am" my symptoms anymore. All of these post are heartbreaking. Please look into him and the programs. And NO I do not work for them or anything. I just want everyone including my self to stop listening to the lie that our bodies cannot heal itself. Don't give up and lie in the lie.