Damn it's hard. Each day is different but always has the pain factor. I find drinking tons of water is key. As soon as you wake up. Chug her back. Try to keep your stress as low as possible. And when it comes on deal with it asap. Whatever it is u do. Breathing .meditating. or however you can alleviate the stress. For me stress is huge. Just recently my feet have gotten the raynauds and they go white for 5 mins. Never has this happened. And it's from me stressing over taxes lol. And the hot tub is also a god sent. At least once a day. And I'm managing without any crazy meds. Just Naproxin. But a lot of it. Been exactly a year since I was using a cane to walk. Just wanted to say everyone on here is truly an inspiration and I thank you for all that you have done. And I wish you all the best in the future.
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And I guess the meds aren't crazy when they keep you alive. I don't know what's harder. Dealing with the pain or the people around you. Sometimes you just want to bury your head in a hole. But you always prevail. Always got to stay positive
Hi Greg,, good to hear an update how your doing. I too have bad raynauds in my toes and fingers now. Are you still taking prednisone and any maintenance meds. Do you still get ulcers.. I'm struggling to get this under control. I have ulcers at the moment and am trying a new maintenance regime. Do you think it's affected your motor nerves,, I'm pretty sure it has affected mine. Sorry for all the questions but there aren't many of us with this type hey
Hard to say if it's affected the nerves permanently. Temporary for sure. I get a hard core throbbing in my one foot and one hand. Both left. And the raynauds happens every morning as I get out to work. Ie stress. And for me the pain seems to move around. I'm only 32 and not boasting but I look like an athlete. I think it's due to the vasculitis. Lol. Because my blood is poor at flowing my muscles are bigger cause everyone says I'm so buff lol. My veins are huge and bulging but because my blood is restricted not because I'm in shape. And I eat like a horse and can't gain any wait what soever. I'll keep you posted on the nerve damage. No ulcers yet. Have had before but nothing crazy. Right now I have a crazy rash on my wrist on the hand that hurts. Cortisone cream seems to help. And ya I'm just popping Naproxin as needed. And Tylenol for the pain as well as maryjane for sleeping. And stress. Just wish I was normal lol. This really makes us strong ass people. Sorry for the language. No cell cent or pred. Thank the Lord. That was the worst time of my life. Hope to hear from you and everything is going good for you. I keep thinking of the future and me on here in ten years. What I'll be typing about. Got to take it one day at a time.
Thankyou Greg,,, it's great to speak to someone who has this. Yes I guess it makes us a stronger person but at times I feel weak,,, like now. I wish I could come off these horrible meds,, especially prednisone. I wonder if anyone has beaten this through natural means.. I still try all my remedies but as yet have not found anything that really makes a difference. It's so hard to keep working as I feel so tired. Is this the disease or the meds? I have this muscle twitching in my feet legs and arms. It seems to be getting stronger and I'm sure it's related to the vasculitis as the toes with raynauds twitch the most.
I know what you mean about burying your head in the sand. Everyone around me thinks I can carry on as normal but they don't understand the pain I have every day. Did you have drop foot that's why you had to walk with a cane?
Anyway thankyou so much for your update. I love this website as I don't feel like I'm the only one fighting this.
For me this disease makes my blood flow very poor. Been diagnosed with venous insufficiency in both legs. And two years ago almost clots started to form in my right leg and I had no explanation except for the doc said I must of hit it? That went on for 3 months and the clots caused thrombosis and it was painful.hence a cane. Now that I know I have a disease. I try to take care of myself. But I'm a smoker and really bad diet. I have two kids to look after and I am the only one who works in the household. Stressful life. I tried quitting but the stress is insane. I've cut back but the diet also is hard. So water is my remedy. Seriously. Lots of water. I buy it in bottles and just chug em. Seems to help my body run smooth.
Hi Thanks a lot for you message. Sorry I havent replied but I dont seem to be able to. I have to verify my email address but cant atm for some reason. Anyhows, thanks again.
No problem. We all got busy lives. I'm sitting here thinking of how to better myself and this disease. I preach on water and rest which is easiest but still hard. Ain't no rest for the wicked. Then reducing stress as much as possible. Even harder. And the hardest of all is diet. And for pain and joint issues I use a hot tub twice a day with nsaids. And mmj. And for everyone with leg and feet issues.i had the pain and still do. Elevate your legs above your heart twice a day for at least 10 mins. I know. For me it's hard to do. And try compression Stalkings and get rid of restrictive clothing. For me my work pouch cut off my blood flow. As well as my socks. Now I wear stolkings and have suspenders to hold up my pouch and knock on wood. Cause I'm surviving. It's a struggle but try to connect all your dots. Cause if you wait for someone else. It could be either to late or the wrong help. For me I think vasculitis is everything around you and it's like an alarm that goes off to tell your body you have gone out of bounds. Just have to find the line in all aspects. Find the limit. Basically. Trying find your sweet spot. I would love to hear from others and how they cope. I liked the one that suggested music.
Apologies for double post. I posted first time and it didnt seem to appear and so tried again. Brainfog maybe or just a dim day.
Hope u doing ok atm. Im trying out the drinking lots of water thing you suggested. Im kind of depressed atm (for first time in my life) and self-care seems a bit of a struggle. Reducing stress also seems important. Whatever the heck ive got started during a period of pretty high stress, so I think it might have been at least a contributory factor. Trouble is that its now more importnat than ever to not be stressed, but also now harder than ever.
Ya I know how hard it is. Atm I'm relaxing in a cabin with the family. And it's working. Barely any pills and my sleep was the best ever. I'm feeling good atm. Sorry to hear your depressed. I deal with it everyday even though I like to think I don't. I'm raising a 5 year old and a 1 year old atm and it's stressing in itself. You just have to sit back and look at your life in 3rd person. And find something that helps and works for you. And for me weed really helps me enjoy the simpler things in life and when stress comes knocking and it always does. It helps me put a leash on it. Then I deal with pain. Omg. I could go on. Just try to be happy. It's got a lot to do with mentality. Hope yu cheer up.
Thanks a lot for your PM. It was really helpful and very much appreciated. I cant seem to send PMs atm and so thought I would give u a shout here. Thanks again.
So I've been doing. Not only have I found ways to deal with the stresses of life. But what you eat and put into your body is what matters most!!! Go back to the old school like your parents parents. And get rid of the processed junk that has nothing in it but preservatives so it can stay on a shelf. Go with a natural diet and you will see the benefits. The stress will be lifted even more once you eat healthy. I admit. The hardest thing I've done aside from quitting smoking. Food is everywhere. But in my case being in pain everyday and night.crying and not knowing why every day. Why me..... it's the stupid food. What I'm putting in my body is toxic. Meat is carcinogens. Just like smoking or asbestos. I'm on the night cap of day 1 being vegan. So no animal by products. It's hard but I feel amazing.... like clear headed. Energetic. And not pain free but damn close. Let's say I've never felt better on a monday..... why don't I hear more people trying this????? If your sick like me why not... what do you have to lose???? I will post after 14 days to let this community know what diet can do for some not all of us who are sick and desperate.
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