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Posted 12/4/2009 12:42 AM (GMT 0)
Hi, I am new to this site so I guess I will start out with telling my "story". I was diagnosed with an under active thyroid when I was 12. I am now 23 and about 2 months ago out of the clear blue had so much pain in my knees that I could barely walk. Lying in bed didn't feel much better either. Since then my knees, arms, and hands are constantly swollen. The skin around those areas are either red and hot to the touch or white and purple looking. Most days I am so nauseous I can not eat. I found out after extensive blood work that I have scleroderma and lupus or as my doctor called it MCTD. My doctor started my treatment out with a 240mg prednisone shot. He told me by that afternoon I should be able to notice a difference. Well it has been over a month now and let me tell you, i do not feel any better and actually every time I flare up it is worse than the last. Some days I do not know if I am going to be able to get out of bed. I have 2 young children and go to school full time, not to mention my husband is lazy and acts like nothing is wrong. I don't know if he doesn't care or just does not realize the pain I am in. It is so very frustrating. I guess the longer this goes on the more depressed I get. Some days I just want to grab my husband or other people and shake them screaming LISTEN TO ME!! I am not faking or whatever they thing this is...I have paperwork to prove it. I have joined other support groups trying to, I guess, find other people my age that are going through the same thing to see what they are doing to make it through this...any incite would be greatly appreciated.
Posted 12/4/2009 2:35 AM (GMT 0)
I'm sorry to hear that you feel alone in this right now...like people aren't listening. I'm fairly new to this site myself, but the little time that I've spent posting my little blurbs, reading others and replying, and sometimes just reading about others journeys, it's been helping me to not feel so alone with the sickness that our bodies can have. It's a hard road to walk down being stuck with a chronic condition. I do hope that you find here what I have...a place to get some extra advice, to be listened to, and whatever else you need. I'm 28yrs old, and I was diagnosed 2 1/2 yrs ago...I still feel too young to be this sick...but then it surely makes me thankful and blessed for the days that I do have feeling well...they will come. Maybe not as often as you like, but they'll be there that's for sure. And in being sick, it's helped me to appreciate the "little things in life" Heck today I was out thanking God just for the fact that I could walk 15 min to the store and breathe in the cold fresh air. 'cause just over a month ago I was getting around with the help of a wheelchair...my legs were burning with horrible pain for some reason...today I am thankful to be up and about...Welcome to the site/forum. Again I hope that you enjoy this "place" I also hope that your meds kick in like they're supposed to and you can enjoy just being up and about with your kids, and family and friends like you'd love to be doing without pain I'm sure. Take care

Ellie
Posted 12/4/2009 5:07 AM (GMT 0)
I am new to this site as well... just registered about thirty minutes ago and have been reading post every since. I am 21 and just found out I have lupus this year, it was finally confirmed. I too feel like I do a lot of stuff, things I know I shouldn't probably be doing like house work and everything but like you my husband doesn't understand why some days I can do things and other days I can't. Or why after a day at work and coming home to do a few things around the house I am ready to go to bed. We just got married in Aril a month after it was confirmed I had lupus and I am worreid what this winter may bring. The cold tempt. is no good for me and the last 3 years winters have been hard for me. I too had and still have knee pain sometimes enough to knock the wind out of me, it was actually that pain that got me into the doctor to get tested for lupus. I was sick shortly after I graduated from high school and lost almost 20 pounds in a 2 months span of time. They did test after test back then and found nothing and everyone said it was in my head and didn't understand how I could look ok for the most part- aside from the nasty dark circle under my eyes- but be in so much pain. I went back in March of this year told them that I think I may have lupus because I was tested before but didn't have it although the specialist thought I did or had early signs. Turned out I did have it. It made me feel better to some degree also as to finally having an answer to all this and to know that I wasn't just going crazy or suddenly becoming a baby not able to stand to do certain things. I am on plaquenil and the pain is much better and very much more able to handle. I also have tramadol for the pain so when it does get bad I fall back on those. The medication has been working for me since March and I hope they continue to do -fingers crossed! I just wanted to let you know that I am close to your age and am going through something similar to you- your not alone!
Posted 12/4/2009 3:06 PM (GMT 0)
Artickat,

It's distressing to hear how many young people are being diagnosed with lupus. I guess the only positive is that you have a network of people here who are your age that you can talk to. Bill, a man on the forum, also has MCTD and will hopefully tell you his amazing story. Many of us have gotten much better, so don't give up!

Lynnwood's suggestion that you pass around "The Spoon Theory" is a good one. I hope it helps.

Hang in there!

Pat
Posted 12/4/2009 4:15 PM (GMT 0)
Welcome. This site is a lifesaver. Just knowing there are others that understand can make a big difference. You have an entire process to work through in order to come to terms with this nightmare disease. Maybe ask your husband to go the the rheumy's office with you next time so that your husband can begin to understand what is happening to you. And rest! That is so hard to do, but learn to stop and rest. It really helps!
Posted 12/4/2009 10:49 PM (GMT 0)
Hey Artikat! You are not alone even though I know you feel like you are. I am 22 years old and can relate so much with how you feel! You just have to take one day at a time and listen to your body. If it tells you to rest then by golly you better listen to it or you can end up regretting it pretty bad.
If they get your meds right you should be able to lead a pretty normal life. Which leads me to ask...are you on any meds? The 240 mg shot is good but anything to follow up with it? Also, are you seeing a rhuematologist? I am so sorry you are having to deal with all of this but Welcome to Healing well and I hope you will find out how great the people on this forum is and what a blessing everyone is!
Posted 12/5/2009 2:15 AM (GMT 0)
Thank you everyone for the advice. It is nice to hear that there are others out there going through this also. I guess it will just take some time to reconcile with the disease. That is why I have looked for forums like these...yes my family is supportive but that can only go so far. It is sometimes frustrating bc they don't know what I'm going through. And yes, Amy I am seeing a rhuematologist...I go back at the end of this month to discuss my next option for medicine. He had also given me a script for tramadol which doesn't help one bit...only makes me sick. I am hoping to continue to talk to all of you more in the future so hopefully I can get through this easier. Again, thanks all of you for ur time and input!...I will also have to forward that link to some people I know...especially some girls I am attending school with right now.
Posted 12/5/2009 5:40 AM (GMT 0)
Hi ArticKat,
I'm much older than you, but I can tell you there will be good times and bad with this disease. I have had Lupus for 32 years. Over the years my symptoms have been mild to severe.

I look at my flares as bridges. The short bridges are mild flares, but believe me, I have crossed some very long ones in my life of Lupus. There have been times when I didn't think there was no end in sight, but through faith, hope and support I made it every time.

Know your not alone in this. We are here for you when you need us. Hang in there and take care. Keep us updated. You will be in my thoughts and prayers.

Babs
Posted 12/5/2009 1:34 PM (GMT 0)
Babs, thank you, I know I said I was looking for people my age to hear from but it is also nice to hear from someone who has been dealing with this for a long time. Someone like you can give good incite into the future. I know this will be a long, tough road and I thank people like you for the support. Maybe some day down the road I will be able to give incite to younger people to help them through this also. Thank you again, I really appreciate it.
Posted 12/5/2009 5:33 PM (GMT 0)
Hi ArticKat,

I am a little older than you (38) but feel I have had this disease since I was a teenager. I feel so bad for those of you that are so young, you shouldn't have to be dealing with a disease like this, no one should.

It is very hard for healthy people to understand what we go through. Lynnwood gave you a great link to the spoon theory, be sure to print it out or email it to your family and friends, and hopefully they will understand.

I have had pred shots too and they didn't help me at all. When do you see your rheumy again? It may be time to start on daily meds to get your joint pain under control. This disease is unpredictable and very frustrating, you will go through flares when your symptoms are worse and new ones pop up and then you will have times when you question your dx, but then it will rear it's ugly head again. The best thing to do is realize your limitations, don't push yourself, eat well, stay hydrated and get plenty of rest and sleep. AND don't be afraid to call your doctor if you are feeling worse than normal, I too have to learn to do this.

I hope you like it here, feel free to ask more questions. Take care
Posted 12/5/2009 9:56 PM (GMT 0)
Hi Artickat, Welcome to the forum! I also have MCTD, in my case Scleroderma, Lupus and
RA. I had a skin biopsy that confirmed Scleroderma, Lupus rashes on my chest and neck
area. I never had the butterfly rash on my cheeks. My rheumy put me on Methotrexate.
In the past I have done a Prednisone taper, Plaquenil and Imuran.

Sorry you are dealing with so much at a young age. You will find out what works for you
through trial and error. I initially went through a grieving period after I was diagnosed.
It became easier to deal with things after I accepted my new normal. I stay active but am
careful not to overdo. Pacing yourself is so important. You want to prevent flaring if possible.

Exercise is very important. It helps relieve stress, builds muscle and does give you more
energy. Soaking in a hot bath helps me feel better. Any form of heat helps!

Taking one day at a time helps. This is a wonderful forum. I also post on the Fibromyalgia
forum. People at HW really care!

Hugs

Robin
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