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New Here and really struggling

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#1 Erin M.

Erin M.


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Posted 12 July 2008 - 12:55 PM

Hi everyone.

I have been reading things on the forum for several months but only today got the nerve up to post. I am desperate. I just turned 30 a week ago so I should not feel this bad! Since March I feel huge changes in body that get progressively worse. It might have started before that, but I didn't notice much until very recently. I had a horribly stressful year and struggled with insomnia regularly. This winter I was sick a lot and I was preparing for a trip to Kenya in February, so in the span of a month I had 2 antibiotics, 5 vaccinations at once (DPT, Polio, Yellow Fever, Hepatitis A, Typhoid) and an antimalarial. On top of that after arriving home I caught a bad gastrointestinal virus.

For the next month I had what seemed like allergies to my workplace--nose running all the time, eyes watering, extreme thirst. I was cold all the time. (I started bringing gloves to work!) The skin on the bridge of my nose would get kind of tight and hot. I thought it was sinus related. I had a lot of stomach pain and bloating and I noticed that when I swallowed it felt kind of like I was eating too fast. There was increased heartburn. In April I started having pain in my muscles and joints, a lot of stiffness. It started on the right side and spread to the other side. My feet felt like they didn't have good padding. My joints popped and locked a lot. I suddenly developed carpal tunnel in both arms and hands and using my hands was hard, especially in the mornings. My elbows started feeling really sensitive. My jaw hurt. I was exhausted all the time. When I took walks it felt like my joints and feet didn't flex right, just very stiff. The doctor thought it was stress and poor body mechanics, so I started stretching more.

Then in May I had this strange sensation of tightness in my jaw that spread downward to my chest. It was harder to swallow and talk after that, but it seemed to go away. A few days later I started getting this hot burning sensation in certain places, and it felt like the skin was stretching. I felt really itchy and dry and sensitive to the sun. My eyes and mouth and nose and "everything else" got progressively more dry. I was given several antidepressants all of which made my anxiety go through the roof and the dryness worse so I couldn't take them for more than a week. I was constantly drinking water and rewetting my eyes and nose all day and all night. The one night I felt the sensation tightness start spreading everywhere-- through my trunk, my neck, my face, my arms, my legs. I could actually feel my inner ear and sinuses stretching. I immediately noticed a huge change in swallowing and breathing. The backs of my legs felt like they wouldn't bend. I swear even my teeth got tighter. This lasted for a week and got a bit better, but started again soon afterwards.

This tightening has gone on pretty steadily for 2 months. It's usually worse in one place then another. I am in pain all the time. I get out of breath easily even just from talking and feel this resistance when I try to breathe in deeply. Some days it feels like someone is actually sitting on top of me when I try to breathe or swallow. I can't sleep lying down because of acid. I feel hoarse alot, like my vocal chords are straining. I have noticed trouble talking and chewing and I am always biting the insides of my mouth. I have trouble using my hands and the skin from my shoulder down my left arm feels so tight that my pinkie and ring finger want to pull under. I have one toe that feels numb and like it will split open if I bend it far enough. My hair is coming out. I have bowel issues and lots of muscle weakness. I feel changes in all my muscles-- even pelvic floor, and sphincter. Everything feels so tight and itchy, almost like sunburn but from the inside. My skin feels rubbery. My fingers swell. My palms and fingers are all wrinkled and have lines through them. I get big marks on my nose from 5 minutes wearing my glasses which I never used to get, my socks cut into me.

I could go on and on. I guess I have already. :unsure:

I saw a rheumatologist recently after waiting 2 months. He did bloodwork which all came back negative. There are no visible signs either. I mean I see changes in my fingers and toes but no one else does. I don't have Raynaud's just extremely cold hands and feet. He wants me to see GI specialist which I have to wait at least a month for. I just don't know what to do anymore. Every week it gets worse--harder to breathe and swallow and move. I can barely work. I fake normality and come home and cry. This week has been horrible. Lately I think that I can't go on, especially at the thought of it getting worse. I am so tired but it's so hard to sleep. I know that I shouldn't stress but how is that possible? I just don't know what to do anymore. I have always been so healthy and done everything right. Why is this happening? I need a diagnosis and someone to tell me what I can do to make this better.

If you've made it this far, bless you for reading. I know it is a small novel, full of self-pity and angst, ha. :) I must seem really whiny. I just don't know how a person deals with this and more every day. I am amazed at the positive attitudes and strength that I have found in this forum. How do you all do it? Lately I just don't think I can...

#2 Sheryl


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Posted 12 July 2008 - 01:44 PM

Erin M. even your gastroenterologist can diagnose Scleroderma. Keep stretching your mouth and face by enounciating your vowels and stretching your mouth. That may help keep your mouth from shrinking as much or as fast. Also stretch your fingers and hands. Lay them flat on the table and give them several good stretches. Hold one hand on top of the other hand and push down to make sure your entire hand lays flat on the table.
Your family doctor should be helping you deal with the carpal tunnel. If you have had the tests and it gets bad enough you may require surgery. I was suppose to have both hands done. When I had surgery on one it somehow helped the other hand and I didn't need surgery on it. So many of your symptoms could be addressed by someone in the know. Hopefully, your gastro doctor is up on scleroderma. You can always ask him to look for signs of scleroderma in your throat if he does an endoscopy, or discuss your bowel problems and he can do the colonoscopy. Your gastro doctor can prescribe things to take care of both issues you are having. He can also give you his oppinion of if you should see a scleroderma specialist. Have you had a Pulmonary Function Test yet to see what the condition of your breathing is or a CT to see if you have any problems with your lungs? Your family physcian could be ordering some of these tests for you. So you can have the results in before ever seeing a rheumatologist who specializes in Scleroderma or other autoammunine diseases. I hope some of this information helps you.
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#3 truman


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Posted 12 July 2008 - 02:35 PM


This disease can be frustrating to diagnose even to today's medical field. Have them check for polymyositis as well. It is imperative that you become your own advocate and supply your doctor with necessary information; much of which can be found here. You are not alone, definitely not alone. We are here for you whenever you need advice. Please reach out to different doctors if you are not satisfied. Do you have family who support you? Please keep us posted and ask questions and/or share information. Between all of us of are a vast of information globally, we will certainly be there for you.

It is what it is...........

#4 jefa


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Posted 12 July 2008 - 11:43 PM

Hi, Erin. Thanks for writing such a long post and sharing what you are going through. Keep in mind that we are not doctors and can not diagnose you. It is hard enough for those people who are seeing you already who have access to your records and can administer the appropriate examinations and tests. The others have suggested some possibilities and shared their experiences which may be similar, but then again may not apply directly to you. At least some of the symptoms you are describing can be caused by anxiety. Read the section on Anxiety and Attitude on our Emotional Adjustments page. Try not to stress yourself out to much. Keep in mind that a good diagnosis will take time. In the meantime, work with your doctors on the individual symptoms. Try to organize a list of the things that cause you the most difficulty so they can be treated. We look forward to hearing your progress as you work with your doctors to find out what is causing your various problems.
Warm wishes,

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#5 Karenlee


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Posted 13 July 2008 - 04:57 AM

Welcome to the forum Erin. I'm glad you found us and shared your story, although I'm sorry to hear that you're feeling so awful. I completely undestand your fear and frustration. Like Tru said, we are here for you. This is a family and it sure helps to have people that understand your fears, frustrations, and concerns. And good for some much needed laughs and comraderie too.

Looking forward to getting to know you.


#6 Peggy


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Posted 13 July 2008 - 05:52 AM

Thanks for your post. You sound like you are really having a terrible time. I really think you should see another rheumatologist that specializes in sclero and associated diseases. There are other tests like a skin biopsy of an affected part of skin that is tight and swollen that can be used to diagnose this disease. Don't give up! Keep on going to doctors until they figure out what is wrong with you. If you don't have sclero maybe you do have Polymyositis. I have both diseases. I was diagnosed with Systemic Scleroderma in August of 2007 and just diagnosed with Polymyositis about 2 months ago. It took me a year of going from doctor to doctor and clinic to clinic before I finally was diagnosed what was wrong with me. During that time I know some of the doctors thought what I was suffering with was all in my head. I just knew there was something wrong with me and kept on plugging away with different doctors before I finally got in front of a neurologist who wouldn't give up "putting the pieces of the puzzle together". It was he who referred me to a rheumatologist who specialized in sclero and she knew immediately what I had. It also sounds like you should be tested to see if you have Sjogren's, which I also have. This causes extreme dryness of the eyes and mouth.

I wish you luck and you have come to the right place to get advice. The people here really care about each other and are always there to lend a listening ear and offer advice and help.

Warm hugs,


#7 Nina


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Posted 13 July 2008 - 03:17 PM

Hi Erin:
So glad you found this wonderful site. And don't worry about your post being long ~ you have to tell you story and I think you did a fine job. I'm still working on mine :-)
Please don't get too frustrated, and if you feel you are, please come here and chat, complain, cry, whatever it takes. You will find the most wonderful group of people here to listen and offer support.
Do as much reading as you can. Start a diary, list all of your symptoms ~ I use to write every day. It really helps to look back and see just how things progress. Don't let any doctor make you feel crazy, that happens, just know you are the one that knows your body best! Educate yourself as much as possible and keep notes. Things will work out in time. I had to see three different rhumatologists before I found the right one. Never give up ,
Welcome and please keep us posted.

#8 Gidget


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Posted 14 July 2008 - 02:54 AM

I am not sure if it matters to you but if you have a borderline autoimmune disease or propensity to an autoimmune disease, then there have been some articles where a Typhoid vaccine can cause the autoimmune disease to flair. I also had a Hepatitus vaccine and could have sworn that I had Typhoid vaccine as well and within a year+ time, I was diagnoised with Scleroderma. Prior to my vaccines, I had Raynaud's. As such, I believe that the vaccines had something to do my disease in that I felt aweful for months after receiving them -- like I was hit by a train or something. Anyway, my point is that although your current tests are negative, you may wish to continue to have yourself tested given the number of vaccines that you have had. good luck. Gidget

#9 Sweet


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Posted 14 July 2008 - 08:29 AM

Hi Erin M,

My heart goes out to you. You certainly have a lot going on and I can sense the anxiety you have because of it. I would suggest you see a Sclero expert. Here is one in the NC area.

North Carolina

Institution: Duke University Medical Center
Suite 09, Baker House, Orange Zone, Hospital South
DUMC Box 3145
Durham NC 27710


Coordinating investigator: E. William, St. Clair, MD


Other Local Participants: Keith Sullivan, MD


Telephone: (919) 684-2193
Fax: (919) 681-8298

I would make an appointment and keep hounding your doctors, even your primary care provider to keep digging as to what is going on with you.

Please keep us posted.

Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)