Raynaud's with Buerger's Disease and Severe Chronic Fatigue

Posted by liss @liss, Wed, Jul 17 2:19am

Was dignoist in 1998 with buergers disease by Rheumatologists told only to quite smoking. No test was done. Never asked how long I had system. Both my hands blue. burning, tingling, numb,,cold and pain. My lower part of arms, stomach, lower legs and feet doing.same.Suffered with sever weakness, fatigue, fever sweets chills insomnia. She never explained what a vasculitis disease was. Just sent me on my Mary way.. A lot more to this story. Anyone else have buergers disease?

Guess I'll finish story. On diagnosis on Buergers disease, I quite smoking .Burned severely all over. Worked. In Automotive. factory, On vibrating machinery, under large AC unites. So of course I was still having all the symptoms mentioned above. Was so extremely. weak.Hardly could left my arms. Found out. No one. wanted to work with me.Worked too slow for them. Was going as fast as I could go needed my job. Already was having trouble with upper management. Missed more days than I was there. Being so extremely weak feeling like I had flue all the time. My arms and legs felt like they weighed a hundred pounds a piece.When I was at work We had to clock in an out, on breaks,was having trouble making it back on time. Lost weight, from,healthy 105 too 89.90 pounds. Off course. working in factory. It got around I had Aids, Anaresic, Belemea ect……Loved every minute of it.. Also had sever allergis developed. sensitivity too every smell in there.So that. Inculed my head spinning,brain fog,couldn't catch my breath tightness in my chest and tingling all over. Had endometriosis. Irrable bowl. Caught pneumonia several times. Broncutis an of course every thing else YOu can't be allergic to every thing have chronic fatigue an work in a freaking factory. But no doctor ever had an idea to relieve me of my duties. If they did, I could of been placed at other job due to disability laws.I had, an have three kids to support. Had absolutely no help.I I'll finish up later. Still plenty more. Just image. Lol

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Good morning @liss and welcome to MayoClinicConnect. We aren’t medical professionals, but we are here to help and listen, and make suggestions. Hopefully, others can join our discussion. Buergers disease sounds very painful and to have chronic disease on top of it, makes it even more difficult fo you. Your doctor was correct, though;
stopping all forms of smoking will help. Smoking constricts the small arteries and veins, which impedes blood flow. This can cause small clots to form such that you have cold, painful hands and arms. You said that you quit smoking—all forms? You don’t want to smoke at all! Can you go back to this doctor? Get him to write a release of duties? Have you seen anyone in the personnel or Human Resources departments? They might be able to help, too. It seems like you need a really good physical exam and workup to put all these symptoms together and find some answers. Will you let us know what you do and how things turn out? We care!

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Hi there – I have Behçet’s Disease, another rare vasculitis Disease. Stopping smoking is a large part of the treatment for you, but your doctor should test you to find the cause. Burger’s can be brought on by autoimmune responses in your body or genetic issues, etc. I don’t know what your job is or if you suffer any chemical, dust or exposure to on the job hazards, but I would get checked for that too. If your hands and fingers are going numb, you can lose them. I would highly encourage you to get a release from work from your doctor and insist on more testing. And above all, stop smoking. I’m sorry you are going through this. Being sick, with children and having to work is so difficult. Do you have long term disability insurance either privately or through your company? I worked until I fell down and couldn’t. Way too long after I should have. I could have suffered death from stroke, heart attack and pulmonary disease because I wouldn’t stop working. Making the decision to stop was the hardest thing I’ve ever done in my life.

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@becsbuddy

Good morning @liss and welcome to MayoClinicConnect. We aren’t medical professionals, but we are here to help and listen, and make suggestions. Hopefully, others can join our discussion. Buergers disease sounds very painful and to have chronic disease on top of it, makes it even more difficult fo you. Your doctor was correct, though;
stopping all forms of smoking will help. Smoking constricts the small arteries and veins, which impedes blood flow. This can cause small clots to form such that you have cold, painful hands and arms. You said that you quit smoking—all forms? You don’t want to smoke at all! Can you go back to this doctor? Get him to write a release of duties? Have you seen anyone in the personnel or Human Resources departments? They might be able to help, too. It seems like you need a really good physical exam and workup to put all these symptoms together and find some answers. Will you let us know what you do and how things turn out? We care!

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@liss I,d like to add my welcome to Becky,s I would like to suggest that you may want to see an infection Dr. maybe he could put all the pieces together or an endocrinologist that deals in hormones instead of a regular primary Dr. Wishing you the best

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Hello @liss, I would like to add my welcome to Connect along with @becsbuddy, @lioness and other members. You may have already seen these sites but just in case here are a few sites with more information.

Buerger disease – Genetic and Rare Diseases Information Center – NIH
https://rarediseases.info.nih.gov/diseases/5969/buerger-disease

Pharmacological treatment for Buerger's disease
https://www.cochrane.org/CD011033/PVD_pharmacological-treatment-buergers-disease

Buerger's disease – Diagnosis and treatment – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/buergers-disease/diagnosis-treatment/drc-20350664

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I have Buerger's disease and it has affected three fingers on my right hand. Very painful and do not know of anything to put on the ulcers to help them heal.

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@nancygayle

I have Buerger's disease and it has affected three fingers on my right hand. Very painful and do not know of anything to put on the ulcers to help them heal.

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Hi @nancygayle, Welcome to Connect. I know it must be a very painful disease. Did your doctor suggest or have you make any lifestyle changes? The National Organization for Rare Disorders has some information standard and investigational therapies for Buerger's disease.
https://rarediseases.org/rare-diseases/buergers-disease/

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I have buerger's disease so far only my fingers which have ulcers and burn and very painful. My doctor at the hand clinic in Louisville told me to soak in small amount of bleach and water and put zinc oxide cream on and bandage. It hasn't seemed to help. I am still struggling with the smoking issue which I know doesn't help. I have got to quit or I am going to lose some fingers. I cannot find a doctor here in Hopkinsville who knows anything much about buerger's disease but there has to be something better to put on the ulcers caused by the disease. I was told it is aa bad blood circulation issue and that is the reason why they get purple, very cold and eventually rupture into ulcers. If you know more, please let me know.

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