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#1 froggy

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Posted 22 August 2010 - 02:25 PM

Hi Everyone. This is my first time posting here. I do not have a scleroderma diagnoses, at least not yet. I'm waiting for blood-work to come back. I have an appt w/ a rheumatologist on Sept. 3rd but my primary care physician saw me again last wk. b/c I'm in so much pain. I feel like I'm dying between the pain and all of the new symptoms that seem to come daily. I'm writing to ask you all if you had/have chronic horrible all over body pain? Right now I'm taking high doses of two prescribed medications per day and it barely touches my pain.

I was diagnosed w/ Reynaud's 20 years ago but it never really bothered me all that much until after the birth of my twins in March of 2009. The symptoms of the Reynaud's seemed to go into overdrive. I have had chronic pain my entire adult life, but I also had a full hysterectomy in late Jan of this yr. That surgery ended in a blood transfusion, and so did the birth of my twins (c-sec), and I also had another blood transfusion after the birth of my 3rd child in 2004. Right. So the all over chronic pain and fatigue was bad, but I figured it was due to the surgery, thrust into menopause, and the blood transfusion. Well, about 2 months ago my husband and 240 of his colleagues got Norovirus at a meeting (ugh must've been the lunch meat!) He brought it home and we all got it. Since then it has felt as though I've had the flu w/ the body aches and joint pain. But what happened as well, is that all of these symptoms that I had since the birth of the twins, have gone into overdrive. I had all over intense itching that they thought was due to some liver problem you can get after childbirth. Liver was fine. Itching is horrible. Then I was getting little pinches all over (felt like little bee stings, but not intense pain). After the virus, the pinching feels like bee stings and my skin feels like it's on fire at times. The Reynaud's is so bad that if I run my hands under cool water for a couple of seconds, they turn sheet white, then all the blue veins fill up, then blue splotches, then red and swollen. They, and my feet hurt so incredible bad all of the time. All of my joints hurt.My fingers (mostly pointer and middle fingers) get little white dots on them that "pop" and then the skin peels off. There's nothing in the dots, its just dry skin that's like a bubble...


Anyway, there's a lot of other symptoms, and I should be getting the blood_work back by Weds. at the latest (had it drawn Tues and she said it takes about a wk.)I will know then if it's scleroderma. My ANA came back low, but I tested positive for anti-smooth muscle tissue and that's why she was sending me to see the rheumatologist. At any rate, I'm just wondering if this kind of pain is from scleroderma, or if it's something else. Sorry this was so long. Thank you to anyone who reads this! Peace and Blessings, ~Andrea

#2 Sheryl

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Posted 22 August 2010 - 02:43 PM

Froggy, welcome to ISN forums. Glad to know that you are under a Doctor's care and planning on seeing a specialist soon. Let us all know what your Blood work results end up showing. I really hope it isn't scleroderma, though it sure sounds like you are suffering from many of the symptoms that go along with this autoimmune disease. I am glad you were able to carry and have children. Pairs are fun. Did you have girls, boys or one of each? We have several sets of twins in my family though I wasn't that fortunate. Kids are work, caring for them and having to carry them can be painful issues to deal with. Great to learn a bit about you.
Strength and Warmth,
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#3 froggy

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Posted 22 August 2010 - 03:07 PM

Hi Sheryl, Thank you so much for getting back to me so fast! Thank you for your kind words as well! Are you a twin, or just lots in the family?

I had a set of boy/girl twins! I had 3 boys, all 2 years. apart, then I had 3 consecutive miscarriages, 2 were early in the 2nd trimester. Quite devastating. They did a bunch of tests and it came back that I have Methylenetetrahydrofolate(MTHFR). I began taking a baby aspirin a day and got pregnant yet again. I was only a little over 5 wks. pregnant and began cramping and spotting, figured it was another miscarriage. They typically do an ultrasound to see what's going on before they schedule any D&C's or what not. So the tech said "Well, there's the sac, and it looks good... and there's the other sac... and it looks good too!" The pregnancy was fairly uncomplicated and I carried full term. My girl, Teodata, was born first (via c-section)weighing 6 lbs. 2 oz. Two minutes later, her "little brother" was born, Santino. He weighed 6 lbs 12 oz. Not a day goes by where I don't just stare at my little miracle babies and give thanks for them! All of my kids! I'm just so scared right now because I'm so sick. I want to be there for them you know?

#4 red

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Posted 23 August 2010 - 12:25 AM

Hi Andrea welcome to the forum! Sorry to hear you are having such health issues. As for the joint pain and body aches, I can sympathize totally with you. My problems started during my last two pregnancies - in 1996, I had a first trimester miscarriage, became pregnant again quickly, but started reflux, gallbladder attacks, and vomited every day til delivery, gained only 10 lbs throughout the pregnancy. I was fortunate to have a healthy, wonderful little girl! Unfortunately, the joint pain began with a vengeance shortly after her birth, and hasn't stopped since; Vioxx helped a lot but was taken off the market after a couple of years. The joint pain, fatigue, GI problems continued, without a diagnosis, until 2 years ago, when I had 2 GI bleeds which forced the issue. After lots of tests, I was diagnosed with systemic scleroderma, even tho my blood tests are negative. Last year I had H1N1 flu, then pneumonia, and since then have had the body and muscle aches, and much worsening fatigue. I've tried many meds but the only pain med that works well is very sedating, and with the fatigue in the background, I take a lot of naps! At least, my children are older than yours - 25, 21 and 13 years old -- I can't imagine trying to take care of your young crew feeling as you are now!

I hope your rheumatologist can sort things out for you, and make you more comfortable. While we all hope you don't have scleroderma, it is very difficult to have such problems and not have a diagnosis. Know that we are here to support you as you continue through this journey! Please take care and try to get the rest you need, very difficult with your babies! Do you have family or friends that can help you with household chores and childcare?

Looking forward to getting to know you,
red

#5 froggy

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Posted 23 August 2010 - 06:23 AM

Thank you Red! I'm so sorry you've had so much to deal with! I can't imagine what you've felt like! And from what I understand, the teenagers can have you quite busy as well!

It is difficult sometimes with the twins, and to top it off I homeschool... I began homeschooling b/c my oldest (9 years) is autistic and our public school system was rated 690 something, out of 700 in the nation. I tried sending him to a private school b/c he is pretty high functioning, but by mid-year he was so far behind and he knew it. It crushed his self esteem and has taken years to begin to get it back. Rather than go through all the therapies and such, plus homeschool him, and send my other boys to private school, I decided it would actually be easier if I homeschooled all of them. Pride cometh before a fall, b/c I really felt like I had it down pretty well. He tested this yr and did well, they all love homeschooling, and now I'm so sick I've been hesitating sending my paper work in to the district b/c I just know I can't do it if I feel like this.

I have a very supportive husband, but he can only do so much. My mother loves to help but she's only able to so much as well. My sister is close by but she is very sick herself. She has SLE, and a slew of other autoimmune disorders. She too, has scleroderma, but she's had it for years and I don't think it's that bad. Her most serious thing is the autoimmune hepatitis w/ an overlap of primary biliary cirrhosis. At any rate, I find myself wanting to help her, not the other way around you know?

Well, hopefully I'll find out tomorrow. Thanks again! Take care. And Peace and Blessings to you. ~Andrea

#6 debonair susie

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Posted 24 August 2010 - 05:43 AM

Hi Andrea,

Although I am so sorry you are having the health issues/symptoms you are...You have found an awesome support network in our VERY large family that extends all over the world.

My base diagnosis is Systemic Scleroderma withoverlapping illnesses as well. The doctors have gone back and forth between Limited and Diffuse,, yet it doens't really concern me (anymore), as long as the symptoms are treated.

We welcome you and hope that you are to be treated appropriately, no matter what is discovered.
Special Hugs,

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#7 Sweet

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Posted 24 August 2010 - 08:24 AM

Hi Andrea,

Oops, I missed giving you a proper welcome, so welcome! Very glad you've joined us. You will quickly find out what a terrific site this is, and that it's filled full of wonderful caring, and knowledgeable people! Again welcome! :flowers:
Warm and gentle hugs,

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#8 Sheryl

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Posted 24 August 2010 - 09:30 AM

Froggy, if you get a chance tomorrow to call and get your blood work results let us know how they turned out.
You asked if I was a twin and the answer is no. Though we have several sets of twins in our family. My youngest sister has a set but I wasn't that lucky. I have 3 sets of first cousins that are natural twins. And a set of second cousins. It looks like it might be skipping a generation with some of us. Or we are all out of twin making genes. I hope your doctor will prescribe something to help you with your pain also tomorrow. It doesn't hurt to ask. You have to let them know that normal things aren't working for you if that is the case. Good Luck tomorrow.
Strength and Warmth,
Sheryl

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#9 froggy

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Posted 24 August 2010 - 12:31 PM

Susie, Thank you for your kind words! Thank you as well for reaching out and letting me know that support is here for me. It is quite comforting. I'm sure that even though you are being treated, it must be frustrating at times to not know exactly what is going on. Unfortunately, it would seem, that scleroderma tends to bring some "friends" with it... in the form of other autoimmune disorders, but you seem to have a wonderful attitude. Thank you again.

Pamela, thank you for the hugs and the welcome! Again, it feels so good knowing that I can "retreat" here when I'm driving myself crazy with questions. Thank you.

Sheryl,I was really touched that you remembered about my blood work! Thank you! You weren't kidding with how many twins you have in your family!! Wow!! I know that once you have multiples, your chances of having a second set goes way up. Since I had the hysterectomy everyone in family has let out a sigh of relief! =) We never had twins in our family, but now we do! =) I keep telling my oldest niece this little fact... she's a teenager and (thankfully) not into having babies right now, so she jokes with me and says "I know. Gee, thanks Aunt Annie." One day,in due time, I hope she will get excited about the possibility. Thanks for the encouragement on asking about the pain medication. I feel kind of weird asking, but I'm going to have to at this point. There are some nights that I feel like I want to go to the E.R. and just beg for them to get rid of the pain and find out what's going on. Unfortunately, that isn't very realistic is it?

I was hoping that they would call today with the blood work results. Do you know if it takes longer for them to get it back if it's positive? In other words, do they have to do more with the blood? I tried checking some of the resources here on testing but nothing really says anything about how long it usually takes. I was also trying to see what it looks like when your skin begins to harden. My hands will look shiny at times, but mostly just dry. The parts on my fingers where the skin keeps peeling is shiny all of the time, but it's also wrinkled/cracked looking, and very hard. Does that sound like "it" to anyone? Again, I seem to get new symptoms every day. Today I was taking a bath (only way I feel like I can get rid of the pain and relax) and I began having muscles spasms in my left arm. Is that anything anyone is familiar with? I'm sorry for all of the questions. It is frustrating trying to figure out what's going on. I know that some of you have been going through this for years and I should just pipe down already!

Well, thanks again everyone. Hopefully I'll get some news tomorrow. Peace and Blessings, ~Andrea

#10 Sheryl

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Posted 25 August 2010 - 12:09 AM

Froggy,
My doctors office usually doesn't call here unless something in wrong with blood work and things need to be rechecked. I usually have to call to get results from them and wait on the phone until someone is free to give the results to me. You can at this time ask for something to help relieve some of the pain until your next appointment. Usually there isn't a problem doing so. Someone will chime in that has muscle spasms like you have been having. I only have had muscle spasms in my legs. Similar to Charlie Horses but worse and lingering on longer. Joint and tendon pain has been my problem the past several years though finally starting to be a bit controllable with medication. Remember if you are in pain you need to let them know at what degree this pain is bothersome at. If is mostly at night then one drug may work better than another. If it is worse during your waking hours then something different can be given to you. Around the clock pain puts you in another category for medication. Speak up and let them know what you are going through.
I have to comment on your name Froggy. When my grandson was close to 3 years old he was spending the night with us. He woke up and was playing with his papa in the living room. He asked if he could go and wake up Grams. So, he came running into our bedroom and was talking loud and excitedly. He said Grams wake up, wake up its froggy outside. I said, "froggy" do you mean that there are frogs, outside. Now, he is jumping up and down to have me pick him up and put him in my bed. He stands up in the middle and points outside and said, "NO" look Grams its froggy outside! I start laughing, and he falls on me and says its not funny, because I can't see. I start laughing even harder. It was a perfectly funny way to be woken that morning. A memory I won't ever forget. Froggy is a great name. When I see my grandson in a few weeks I will tell him someone on the forum has the name froggy. We laugh about that morning so often. He will like it that someone uses the name froggy. End of story have a nice day.
Strength and Warmth,
Sheryl

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#11 red

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Posted 25 August 2010 - 12:41 AM

Hi again Andrea,I am a homeschooling mom too! My 2 older children went thru school without issues, but my youngest struggled with dyslexia and by 4th grade, was so far behind her classmates, she was in tears daily. When the school district denied, for the 3rd time, our application for special ed help, we pulled her out and started homeschooling to give her the one-on-one help she needed. She's now in 8th grade and has raised her reading ability up to around the 4th grade level, a major accomplishment considering she was only at a late first/early second grade level at the end of her 4th grade year. I applaud you for your decision to homeschool your children, no easy task even when healthy!! Even if your children need to go to public or private school for this year while you attend to your health issues, I'm sure that you have given them a wonderful experience and the necessary educational groundwork for them to succeed!

Please let us know your blood work results, and hopefully your doctors can address your pain and spasm issues quickly. Our thoughts are with you!

red

#12 Amanda Thorpe

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Posted 25 August 2010 - 03:50 AM

Hello Froggy

My welcome's late in coming but welcome nevertheless! Have you had your blood test results yet and how are you getting on?

Take care and keep posting.
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#13 SaraM

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Posted 05 September 2010 - 12:53 PM

Andrea,

My welcome comes even later, but welcome! And much congratulations on your new little ones! Sorry about your pain.

I have limited scleroderma with Raynauds that has progressed from simply cold hands to multiple skin ulcerations at a time. I sympathize with your situation with your hands! I have learned a couple of tips if they are still bothering you, and if you search the information here on Raynauds, there's a lot available. I am on some vasodialators and using nitro paste for my hands now, and they are manageable. Another thing to remember about Raynauds is that it is caused by the SHIFT in temperature. I don't know if that is helpful, but I hope so!

I also want to congratulate you on homeschooling. I am a teacher myself, my mom homeschooled my younger sister, and my mom is now a special education teacher (in an autism support classroom). Teaching, even your own children, is not an easy job. If you ever want to commiserate or brainstorm, we can off-forum!

Welcome, again, and let us know how the blood work turns out.

Warm Thoughts,
Sara

#14 froggy

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Posted 06 September 2010 - 01:42 AM

Sara, Thank you so much!! I will definitely be taking you up on your offer at some point this school year! Very comforting to know that I can contact a professional with great experience, and one that is going through what I am as far as the physical aspect. This is the first year that I'm "Going it alone." Since I began homeschooling 3 years ago (going into my fourth) I had always had a special education teacher overseeing everything. She would help me with everything from curriculum to the spiritual side of it. I'm missing her advice already. I could not afford to enter the program again this year, and she thought that I'd be just fine on my own, but I'm really very scared about it! So thank you!. Yes, I have noticed that the Raynaud's gets much worse with the shift in weather. I live In Pittsburgh, PA and we usually skip spring and fall (for the most part). Last week it was humid and in the nineties, and this week it's going into the fifties at night. My hands are killing me as I type.

*UPDATE*
I went to see the rheumatologist on Friday, and she said that I have Sjogrens (My sister Mary, who has Lupus and a slew of other serious autoimmune diseases has this as well). She also said that my Raynaud's has gone from Primary Raynaud's to Secondary Raynaud's. She said that this is not typical. Usually people have one or the other, but they rarely see one develop into another, so they're trying to find out why it happened to me. Sarah, is this what happened to you as well? She said that they look for two things when they diagnose autoimmune disorders: Heredity (I have) and a trigger, such as child birth, surgery, illness, etc. All of which I have had. So she took so much blood I thought I was going to need another transfusion! =) I have to go back in two weeks to get the results. She said "You definitely have something going on... don't know if it's Lupus, Rheumatoid arthritis... we'll find out." She put me on a low dose of prednisone, which seems to be helping a lot and it's only been a few days. However, I don't know if it's because I did so much yesterday, but last night I had so much intense joint pain. I just wanted to cry. Could be the weather change? The Dr. said that she'll keep me on the prednisone for a couple of months until this settles down. Then she'll put me on this Plaquenil for long term use. She was going to give me some eye drops and something for the Raynaud's but I told her I'd wait until I couldn't take it any more. After the strong shift in weather, and the pain last night, I think I may ask her for the medicine next time I see her. So that's the skinny for now. Thank you again Sara, and thanks to all of you wonderful people! Peace and blessings, ~Andrea

#15 Jeannie McClelland

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Posted 06 September 2010 - 04:04 AM

Andrea, I think I'd go for the medication for the Raynaud's now and try and prevent any serious episodes as the weather continues to get colder and wetter. Better to prevent the damage than to try and do something after it has happened, don't you think?

My hubby and I lived in Harrisburgh, PA, for 3 years and he says PA is very beautiful but only has 2 seasons: hot/wet and cold/wet! Mind you, it was pretty cheeking coming from a Brit because the way you tell the seasons in England is that the raincoats are dark in the winter and light in the summer. :P
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#16 Lil Dee

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Posted 06 September 2010 - 11:40 PM

Jeannie McClelland !!! I'll have you know I haven't got a single light coloured rain coat in my wardrobe :lol: Those that have read my BBQ comments will already have figured this out !

Hello and welcome to Froggy !! :bye:

You really are going through the mill at the moment, aren't you ? I hope by the time this is posted, that you have managed to get some more meds, and they are working on reducing your discomfort. I feel for you (literally) as I am also trying to work out the best course of action for my increasing joint pain.

As awful as this condition is, it's nice to know I'm not alone in my quest for help, or in trying to keep sane - though I don't know any of you well enough to comment fully on that one yet ! ;)

#17 froggy

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Posted 07 September 2010 - 11:26 AM

Jeannie, Thank you, and very funny! Your husband is unfortunately spot on when he says that about Pennsylvania! It's also unfortunate that Pittsburgh is probably the worst of all the cities because we're in a valley... everything seems to get "stuck" here! I don't know about the UK, but I have a sister-in-law that lived in London for two years and I have to say that she concurs about the raincoats (and there are of course, always exceptions to the rule, such as Lil, with only dark raincoats.)

I called my doctor today. I never thought about it like that Jeannie, until you brought it up. I wasn't thinking preventative, you know? In my mind I just wanted to hold off on anything I absolutely did not have to take. I don't know what the deal is, but I've been in horrible pain the past couple of days, more than "normal" -- but as Barbara Johnson likes to say, "Normal is just a setting on your dryer." When I called today (doctor wasn't in, said they'd give her the message tomorrow) I asked for an increase in the prednisone (only on 10 mg) and for the Raynaud's medication. I don't know if the increase will help, I sure hope it does, I'm desperate.

Lil, Thanks for the welcome! You have that British dry wit that I love so! Very refreshing! I'm sorry you're dealing with the pain management as well. It does make one nuts, or at least you and I, so I can certainly say that you may freely comment on my not playing with a full deck... fire away Girlfriend! :D