I'm a 38 year old male who now suffers with secondary Reynaud's in a bad way on a daily basis. I've been giving sedenifail which did nothing. But now they have given me Botox in between my fingers which has made this 10 times worse as now they go black and have all cracked open.
I got this condition when I started taking entreaties in replacement of rampril.
I take this and other medication for my heart has an icd defibrillator and pacemaker helping function till I can get a heart transplant which I have been told I can't have till this has been stabilized.
I have Servier Biventriculae Cardiomyopathy after having Phnumonia for 3 months which caused an enlargement of my heart causing it to fail.
I now have fluid retention causing my whole body to swell, my including my head and neck, but every time I have water tablets or infusion I get body spazems an craps were my calf's go inside out...!!!
The worst part is being violently sick every morning noon night trying to get thick white mucus of my chest and the lack of sleep.
So while all this Is going on I now sweat like am in a sauna with a coat and all your clothes on lol.
An just keep sent home cos my stats are coming back nearly right
And cos the mucus is white that am bringing up.
So please if he can point me in the right direction it would mean the world to me thanks Tony also I've just been kicked off the p I p and have got a make a new claim as the decision has been made
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TonySpit
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You poor thing ... my heart really goes out to you over all you are suffering with.
🙏🕊🙏🕊🙏🕊🙏🕊
I have primary Raynauds Phenomenon, so does my dad.
He also has your blue fingers condition and his heart “ part of it isn’t working “. He won’t tell me what the true condition is but I suspect he is in failure.
I cannot help you with suggestions but I wanted you to know that I just prayed for you. You are so young to be in your condition. I am following your posts. You can post me anytime 🕊💕🕊💕🕊
Thank you for your reply an following an most of all your prayers. And if I find out anything that may help yous to. I'll be sure to let you no ok luv. Xx
I wish you well an try to stay strong even when it's tough just remember like me theirs always someone else worse off. So enjoy every second with are loved ones as somearnt as lucky as us are they xx
The one thing we can all do for ourselves is control what we feed ourselves.
There are a number of doctors who have now had great remissions/cures for their own auto immune conditions using nutritional approaches. Dr Terri Wahls, Dr Brooke Goldner. These are just 2 that spring to mind.
The modern day diet is generally very high in processed foods. But the most nutrition comes in the form of just picked foods. These foods have a higher vitamin content and many still have live enzymes the body requires.
Anything in a packet or tin or that has been pre prepared will be lower in nutrient content. When you are unwell you need nutrients to give you a boost.
If by chance your diet does not contain mainly fresh food you may benefit from taking supplements.
Google Andrew Saul. He has been called the vitamin man as he does not sell any but recommends that everyone takes vitamins.
Why?
Well he says ideally we would get all of our required vitamin content from food. But modern diets in general contain much of little nutrient content, thus leaving us lacking. That leaves the choice of drastically changing your diet, or else getting the required nutrients through supplementation.
If your body is severely lacking in some nutrient or another, you will continue to feel unwell until the imbalance is addressed.
I am only another patient with no medical training. But I have read quite widely on the subject of nutrition. This I believe is one of the few avenues where we may be able to do lots to influence the direction of our illness.
You poor thing, you certainly have a battle on your hands, I hope that there are some people on the site who can offer you some useful advice, or ideas that you could test, or ask your specialist about. As we are all treated and cared for by different specialists the results are not just the result of their training, but also of their experiences based on what each of us bring to their door. Treatment seem to vary, so hopefully there will be people whose treatments , or aspects of it might be helpful for you to know about.
Sadly I am not sure how much I can offer as we sound as if we are at different points with our symptoms, I have Raynaud's and my hands can look very like yours, but no where near as frequently. I also have scleroderma and have regular heart and lung tests About five years I have whooping cough which went undiagnosed for a couple of months. The after affects are that I struggle to clear mucus from my lungs, and would be coughing like someone with consumption on a daily basis! I was not sure from your post if clearing the mucus was part of your symptoms, or if you simply mention it as the colour is part of the way they judge infection.
In case it is helpful I have had success with carbocistine which I have been prescribed for long term use. It seem to decrease the mucus, so now much fewer of the colds I get lead to chest infections. Where I succumb to an infect I can sometimes make it through without steroids and my family are enjoying more peace and quiet.
I think that overnighthearingloss gave some good advice - I will certainly look more closely at what I eat and spend a little time following up on that research. Sharing our experiences and challenges, can have positive outcomes for other people, even if it takes a little longer to reach the person with the information that you are waiting for,
You are in my thoughts. I hope that good news is around the corner for you
Like wise and thank you for replying and yes I will be looking in to all of what any one says as even if it only helps that 1% ill try anything as theirs nothing to loose by this. An yes a struggle removing it off my chest especially of a night an first thing is a battle in itself. I will mention this next time I see the specialist which is in a few days from now an will let you no what they say.
Once again thank you for the reply to my post as I was really starting to give up and was running out of options
Hi tony you poor thing don't want to worry you are you seeing anyone about your raynaurds I see a dr Middleton Rheumatology he told me if my fingers go black must see him urgently hope you get sorted out x
This is what I am worried about to be honest. They were going like pure white down to my nickels on both hands and also my feet. Were I was then referred to the plastic surgeon ✋ specialist at whiston hospital who suggested Botox injections in between my fingers.
Since this it has become unbearable to say the least. Now they go black but have all cracked and are sore when touching or picking up things.
Thank you so much for your reply doe an wish you the best of health an happiness x
Poor you. I had severe raynauds in hands and feet which led to my scleroderma diagnosis. Since taking snow release nefedipine my symptoms have been much better. Whether you would be able to take it with your heart problems I don't know but worth asking.
Wow! You sound just like me! My body can't handle the meds my doc tried giving me. I take Kallawalla. I think it helps! The spams are really bad and painful i haven't figured out what to get for them yet. Hope you feel better !
I can't add much to whatever has been said, but I can say that my finger problems have improved thanks to treatment with Sildenafil (improving peripheral circulation) and Methotrexate (damping down the auto-immune response). I always wear specialist gloves and finger mittens from the Raynauds & Scleroderma Association (I'm wearing them now as I type!!)
Interestingly, I have discovered that tea and coffee (all types) have a bad effect on my fingers so I have cut them out completely. I now drink herb teas and drink cocoa - and of course filtered or bottled water. If I have even one cup of tea (e.g. PG Tips, Earl Grey, Yorkshire, etc) my fingers soon start hurting and stiffening up, and ulcers start to reactivate.
Best wishes,
Tim
Hi Tony,
I also take Nifipidene (as above) and Sildenafil, which have really helped my Raynauds - mine was pretty awful before the meds, and i had digital ulceration as well which was horrible.
I also had to take diuretics for fluid retention - which were awful and also gave me foot and leg cramps but they did the job. A low carb and low salt diet can really help to get rid of excess fluid as well which will help get some of the swelling down. It sounds awful but isn't that bad when you get the hang of it.
I would also second giving up caffeine where you can - decaf tea and coffee are actually okay and i think that caffeine really aggravates Raynauds.
I can't imagine what you're going through, there's so much going on with you. I don't know anything about all of your problems except raynauds but I certainly hope you find some relief soon and good luck with your new claim for pip. Hope all turns out well
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