Raynauds, Scleroderma, Pulmonary Hype... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Raynauds, Scleroderma, Pulmonary Hypertension and Heart Problems

JayneO profile image
6 Replies

Well it seems that my diagnosis's were never ending! I now have to learn to live with it all.

To think I only went to the Doctor because I was short of breath, and generally felt unwell!!

I would like to hear from anybody with tips for coping with any of this!

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JayneO profile image
JayneO
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6 Replies
kel55 profile image
kel55

Hi, you slowly walk from day to day.

Notice I said slowly walk not run or just walk. It took me about two and a half years to accept similar to you, not give in but accept limitations, this doesn't mean you don't push but you get to know when it's time to stop and you stop or it hurts.

I have Small Vessel Disease, Microvascular Disease, hypertension, Raynauds Phenomenon and vascular spams, primerally it affects my heart but it can affect any organ or area of my body, it hit my gallbladder this time last year and it caused pancreatitis, so they took out my gallbladder! I've also had a vascular TIA

Along the way I've picked up a few Periferal problems, fibromyalgia type symptoms, chronic fatigue syndrome, and chronic anxiety syndrome apparently they come with the job lot!

The best words of advice I can offer are: to make sure you take your family with you on your journey, they will be hurting for you and because of you, also read as much info as possible (your responsibility) and pass it on to your family.

Take care

Kel

truerose profile image
truerose

I to have the same as you but my heart is ok..I have a lot of things going on to I have SCLERODERMA,RAYNAUDS and lungs scared..Am Shortness of breath I have had it for 6years now......I hope you get well soon TRUEROSE.

zenabb profile image
zenabb

I have the same as you except for the lungs. I have digestive dysfunction. My heart is not as much problem as I thought. We are quite friendly with each other other now.

LucyJean profile image
LucyJean

Hi Jayne, I think you might have been copying my list of ailments! ;) I complained about shortness of breath towards the middle of 2012 and ended up with a borderline pulmonary hypertension diagnosis and ectopic heart beats (to add to all them others). I got really freaked out at the time, and then after a while I calmed down, started walking more slowly and taking life more steadily in general. I also got a radical hair cut (from shoulder length to pixie crop). Which shocked a lot more people than my diagnosis ;) Here I still am, pottering along relatively nicely, working with what I have, smiling sweetly when people going charging past me in the street. Pacing my housework activities...working very part time and generally determined to defy the system. Hold on in there. It feels absolutely mindblowing to start with but you are going to get through it. All my best. Lucy xxx

JayneO profile image
JayneO in reply to LucyJean

Hi Lucy

Thanks for you reply, no time to reply before I have been visiting my Consultant for the Lung & Heart problems!! I now have to go to the Royal Free for yet another heart catheterisation, it seems he is not happy with the drugs I am on, they are not doing the trick!!! I also have to go in to my local hospital next week for a 5 day infusion of Iloprost because my Raynaulds is so severe. So what with having all that done before Christmas I don't think my priority will be shopping! You are quite right about the plodding, I am now in training for it! I feel the same as you I WILL defy this!!

I hope that you are ticking along ok? I found your message along the same lines as my thinking, and refreshing to hear from someone who sounded like minded as myself! I know I have a serious illness but I don't want to be an invalid!!!

The thing that I would like to be able to do most, is to go out for a nice walk along the beach with my 3 Labradors, I'm easy to please!!!

Having said that I am really looking forward to going to bed tonite, I have treated myself to an electric bed, I am so sick off all the aches and pains !!!!

You take care, and I shall look forward to hearing from you sometime.

All my best

Jaynexx 🏃🏼😃

PaleIndian2 profile image
PaleIndian2

Hi Jayne I have Limited Systemic Sclerosis (CREST) and borderline pulmonary hypertension. Don't try running for buses any more, unless you want to "die" on the platform with everyone watching you. I plod, that is the only word for it. No-one can keep up with me, they all walk far too fast even my youngest grandson! I still try to do everything that I did before but pace myself. I still can manage a treadmill at the gym but slower, tai chi is ideal for us, it is slowly paced and also breath easy yoga. The only problem is I do suffer from chronic fatigue so by the end of a week I am exhausted. I go out with a couple of friends every few months and we usually go walking so I have invested in a portable scooter. It was a bit funny at first but everyone has got used to it and it allows me to go out on longer walks without holding everybody else up and not being too exhausted at the end of the day. I also find that I use a shopmobility scooter when I shop by myself as my local mall is on a man made mountain and it means that I can still take myself off to the shops and shop in a much shorter time and actually enjoy it with feeling too tired to continue. I am lucky, most of my heavy housework is done by my husband and the rest I break up into small tasks. I still walk up stairs but slowly and usually stop to let others who move faster than me to get past. It is frustrating but I can still be independent.

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