Posted 18 November 2009 - 05:04 AM
I have had a wild ride over the past year. I was told about a year ago at age 42 I had coronary artery disease.This past May I went in for a heart catherization. When I got down to the lab as they were prepping me my hands were ice cold as well as my feet both were almost blue.They determined it was Raynauds.The cath went well but since then I've gone down hill for weeks I was fatigued, joint pains, heart burn just felt like junk.I was beginning to think I was going nuts,spending alot of time in the doctors office and out of work. So it's now November I haven't worked since May they have put me on Procardia to help with the Raynauds,which seems to help a little and pain medication for pain. I am applying for SS disability something I thought I wouldn't have to worry about till I was an old man.The pains I have in my hands is constant most days going up to my elbow.I have pain in my legs most days.Some days I feel kind of like my old self, and spend the day out with my family, but then I am wiped out again the next day.So enough with my own little pity party.With all my new found "free time". I have discovered this is a disease that is more common in women than men.I am just wondering if there are any other men out there with a similar situation.
Thanks for listening
Posted 18 November 2009 - 05:17 AM
Welcome to the Sclero Forums! I'm really glad you found us, but so sorry it's due to your ill health. Your story sounds very familiar. It's difficult to watch our lives change, and it certainly is an adjustment. I was officially "disabled" last year, at age 48, so I understand your feelings on "wow, never thought this would be me at this age".
We do have several male members, and I'm sure they will chime in with their stories for you, and to provide you with support.
This forum is wonderful for information, support, and friendship, so post often, ask questions, and you'll find your not alone in this journey.
I'd like to give you a link for Emotional Adjustment, that may help.
Look forward to knowing you better.
Posted 18 November 2009 - 05:26 AM
Posted 18 November 2009 - 05:57 AM
Yes, it is very unusual to see a man with scleroderma, but they are out there. We do have one male that is very active with this site and in helping others. I'm sure he'll jump in soon.
Are you seeing a scleroderma specialist? We all think that it is very important, especially at the beginning of the disease to see a specialist. If that is not possible, then be sure that your rheumatologist is experienced in treating such patients. Everyone is so different so your main doctors need to know about all of the problems that can be caused by scleroderma. Through me, my rheumatologist learned that it can cause complete heart block. He had treated a lot of scleroderma patients but never had one with heart involvement.
Good luck with your disability application. We do have several members that have applied and received it. The one thing that the successful ones have said is to work with a lawyer right up front. You might want to check out this thread about one of our members journey in getting disability. It might help make yours easier. Please keep us informed on how your's goes and how you are doing. Hope you're having a sunny day today.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 18 November 2009 - 06:15 AM
My son was diagnosed at age 18 with sine scleroderma, then changed to UCTD since he has no Raynauld or skin issues. He started with the fatigue, esophageal dismotility, loss of vocal cords, restrictive lung issues, + blood work up, and 20# weight loss. After 9 months, he was placed on Plaquenil and is doing fine.
This group has been a lifesaver for me.
Take care, Everyone.
Posted 18 November 2009 - 08:50 AM
Welcome to the forum it's a great place to be.
I see you've been diagnosed with heart problems and Raynaud's, I wasn't sure if you've had an actual scleroderma diagnosis? If so then as already said you would do best to see a scleroderma expert simply because they are best placed to intepret your symptoms and come up with a treatment plan.
There are other men on the forum and they will no doubt chip in soon and even if you are in the minority you are more than welcome here.
Take care and keep posting.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 18 November 2009 - 10:39 AM
Welcome to the Forum. We could definitely use more fellows around here.
Raynaud's is pretty interesting, but not what anyone would call fun. Did you check out the page on it? There are some good tips on coping with it and you'll also start seeing it mentioned in threads a lot as we get winter here in the northern hemisphere. Although not all the pain you are experiencing may be due to the Raynaud's, keeping your hands and feet warm and comfortable should help with the pain quite a bit.
Heartburn is also another popular subject around here. I think we should have a page called "I dream of chilli" (well, I dream of choriz' grinders actually) but the one we have is called Esophagus: Reflux.
Did you know we have a Chat Room with chats scheduled for Wednesday mornings and Sunday nights (east coast time)? They can be a lot of fun.
I hope you'll post often. Good luck with the disablility application.
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 19 November 2009 - 09:45 AM
About twelve years ago came down with secondary Sjogren's syndrome, then a mysterious inflammation flare-up nine years ago (went away after a few months and some steroid treatment).
In 2002, I came down with Burkitt's lymphoma, which was successfully treated with chemotherapy and an autologous stem cell transplant. Since then, the sclero problems have been much worse, including pulmonary hypertension (a common secondary involvement).
There are many useful drugs available for Raynaud's - including many of the erectile dysfunction (ED drugs). Different things seem to work for different folks. You might search some of the postings if this interests you. It sounds like you are not having trouble with finger ulcers, so you may not need a lot of help.
I agree strongly with others who recommend a scleroderma expert. Other doctors seem to know very little about this disease. As much as possible, you should try to become an expert! To make it more difficult, everyone seems to have a different version. I for instance, have no esophageal problems - but severe lung problems.
I think it is wise to know your inflammation indicators. These are common blood tests that let you know if you have inflammation. Erythrocyte Sedimentaion Rate ("Sed Rate" or "ESR") and C Reactive Protein ("CRP") are two of these. These are non-specific - which means that they indicate inflammation from any source (the flu, cancer, scleroderma). Generally, the worse you feel, the greater the inflammation. Some of the folks on this board can guess their sed rates by how they feel.
Did you get a diagnosis from your heart catheterization? I ask this because your symptoms could be due to pulmonary hypertension or fibrosis - which are common with scleroderma. Right heart catheterization is used to diagnose PH. These lung problems cause shortness of breath, which could seem similar to heart disease.
I applied for SS disability and was turned down. I've since gone to a lawyer (my experience is posted under "Disability Question").
I generally hear that 90% or more cases are female. However, in my family it's only been male - me and my father. My sisters and other women are not effected.
Good Luck - get an expert and learn all you can!
Posted 19 November 2009 - 01:42 PM
Just wanted to say hello....you've found the right place to ask any questions here....you'll find loads of factual information...I am always learning something new! Take care.
Posted 20 November 2009 - 01:21 AM
Just to say hello and glad that you joined us in chat last night.
Posted 20 November 2009 - 01:48 PM
See you all there,enjoy the weekend.
Posted 21 November 2009 - 05:54 PM
Good to see another male on the forum. I only recently found the forum myself and have found it very helpful in realising that the many subtle symptoms I get are not just in my head but others with scleroderma suffer with them also. I started out with Raynaud's many years ago and the hands, feet and nose coldness either levelled off or I got used to it. My hands do not work well enough to deal with coins so each time I buy something I usually use a note so now I lean to one side with the weight of coins in my trouser pocket!
Cheers Professor Plumb
Posted 22 November 2009 - 02:15 AM
Like you I probably have had this for quite a while. The Raynaud's is pretty intense comes on suddenly. I have been sleeping under 2 comforters and a sheepskin blanket along with flannel pajamas since the summer, even on the hottest nights.Yesterday in my own house I got so cold that I was in my heated leather recliner with my comforter sheepskin blanket 2 sweatshirts and ski mittens.
I am finding I can get used to that, its the hands, arms that feel like I have put them through a wood chipper on some days that is starting to get a bit old. I am staying positive though; life sure is an adventure.
Posted 22 November 2009 - 01:04 PM
Welcome to the forum. I believe only 5% scleroderma patients are men.
This forum has wealth of information.
Posted 24 November 2009 - 05:11 PM
Sorry this is a late reply. I am a man with Scleroderma and your story is very familiar to me. I was 43 when I was first diagnosed. That was 3 years ago and the symptoms I had are very similar to yours. Joint and muscle pain, horrible fatigue, Raynaud's, GERD were only a few of the symptoms that became a regular part of my life.
Thankfully, most of my symptoms have either disappeared or are controlled with medication such that I am working full time again. I received a stem cell transplant to combat the disease. Although we men are certainly outnumbered with respect to this disease, we are out here. You are certainly not alone. Please don't hesitate to ask if you have any questions. I wish you the best.