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Hello my name is Yasmin and I was diagnosed with MCTD about a year ago. The first months were hard b/c I didn't know what to do and now I just feel not just pain but depression as well. My friends and family think I am over exaggerating about my pain and stiffness. I just don't know what to do some days are good and some days are really bad. It takes me sometimes an hour to get ready for work. I cry all the time and they think I'm being over sensitive. In their only defense they have never seen me like this. Out of all of them I use to be the most active and now I can't even go out like I use to. I get mad at the world and most of all myself. I have always been strong and for the first time I feel weak, insecure and depressed. Sometimes I don't know what to do and feel so alone. I hope that maybe someone does know and can help understand and find some courage to keep going without becoming a complete mess.
 

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elisabethm
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:welcome: Yasmin this is a great site to be on as there is always someone to give you support.Have you got a rhumy if so what medication are you on have you had a positive lupus test.From your post i get the feeling that you are young and cant keep up with others why dont you let them see the site and then ask them to help you a bit more it is not fun not being able to do as others do but at the end of the day you know how you feel.There will be others on the site that will get back to you aswell hope to here from you again Elisabeth
 

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Thanks for listening

I am currently taking about 800 to 2400 milligrams of Ibuprofen a day. I have tried Naproxen but it caused a horrible reaction and I had horrilbe lesion like rashes all over my body. As a result I had to take Prednisone stop the rashes from spreading. I am 28 years old and I don't know if you consider that young. But thank you so much for responding I don't know how my friends will react to this site. I feel as like they think I shouldn't complain so much that I should be able to cope with it and toughen up. Like I mentioned they have never seen me like this and so they think I am a drama queen although I try my very best not to show them the pain that I'm in on a constant basis. I am so sorry for going on like this but it feels good to talk about it.
 

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Hi yasmin

A big warm wecome to you :)

you have come to the right place for support & understanding..I have found that one of the best things about the forum is that I don't feel so alone with my disease anymore..

I am sorry you are not receiving much support at a time when you obviously need it....you are certainly entitled to complain when you are feeling poorly & in pain :sad: you are only human after all!

have you talked to your gp or rheumatologist about how you are feeling?..is there anything else that they can offer you for the pain?

I hope you enjoy being a part of the forum and I look forward to getting to know you better.
sending you big gentle hugs :hug:
bye for now....karen x
 

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Hey Yasmin,
I need to ask you what MCTD is. I am not good with short forms yet!! LOL
Hopefully you will get the help you need. I think depression goes right along with what you are going through. Your friends and family need to be more supportive. Sometimes you can choose your friends, but not your family which is too bad. I remember when I was first diagnosed, I was asked to be a bridesmade for one of my "good" friends. I gained ALOT of weight from the Prednisone and she told me a couple of weeks before the wedding that I would not look "good" in her pictures. Well she is no longer a friend of mine. You need to get a final diagnosis and then find support groups in your area to help you out. Look forward to chatting with you!
 

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If you are only on an NSAID, then you need to find another rheumatologist and get a second opinion. Treatment with an NSAID is NOT enough for MCTD= Mixed Connective Tissue Disease. This is an autoimmune disease that has features of a few different autoimmune diseases such as lupus, Sjorgen's, rheumatoid arthritis, scleroderma, etc.

It's not surprising that you're in pain all the time and not getting much better because you're not on any disease modifying medication. There are many options to choose from that can help with all the various symptoms you are expereincing. I strongly recommend going to a different rheumatologist quickly... the sooner you get on the right medication(s), the sooner you should start to feel better more often.

It *is* depressing being in pain and tired all the time, not living the kind of life you are accustomed to. Therapy (especially cognitive behavioral therapy with an experienced therapist in dealing with chronic illness issues) can help you greatly in how you adjust to living with this disease. Sometimes antidepressants are necessary as well, they have helped many people here on this board. Therapy will help you learn how to deal with your friends comments/actions too...

I think it's very possible for you to improve greatly in the next year. Stay strong... you're worth it.

And yes, 28 is still young in my book! (almost 10 years your senior...) :)

Welcome to the site. Hope you see some big improvements soon...
 

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Hello Ysmin and welcome,

I can only agree with Maia, in that, no way are NSAIDS enough to treat MCTD. You should definitely be on disease modifying medication and anti-inflammatories should hopefully only be needed to help from time to time. I'm aslo a little worried about you being on so much Ibuprofen as it is not generally an anti-inflammatory chosen for people with anything resembling lupus as it can be harder on the kidneys than some others.

I would try and get a referral to see another rheumatologist and get a second opinion. Correct treatment brings huge relief for so many people.

Katharine
 

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Hello Yasmin,
I am sorry you feel so bad. Pain and fatigue are very isolating.
Sounds like your family are still in denial. Well Done for still getting to work, I am sure it is hard.
Hope your Employers understand how you feel.
x Lola
 

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Welcome to the forum
Having a chrnic illness is a very lonesome business at the best of times so I hope you will be comforted by being with people who do understand what you are going through. problems with friends and family are very common indeed.

There are a couple of "letters" on the Friends and Family section which might give you some ideas on how to deal with them. Basically you have to stick up for yourself and let them know how their attitude makes you feel. How would they feel in your place to have it suggested they were over dramatising.

I can't understand why you have not yet been offered helpful treatment. If you don't have an appointment coming up soon, do your best to get one at the earliest opportunity. The GP is usually the first port of call - they might be willing to prescribe some Prednisone for immediate relief considering that you have already been diagnosed. They can be very helpful in pushing for a speedy appointment when it's urgent.

Make a detailed list of how the disease is affecting your everyday life and score pain levels on a scale of 1-10 and times of day. Your GP might be able to help with depression too. This is very common as a reaction to having pain and all the other problems the disease causes but it can also be a symptom of the disease itself.
So, the first thing to do is ask determinedly and persistently for the help that is undoubtedly out there.
We'll help you all we can so don't hesiate to ask and please keep in touch to let us know how you are getting on. You don't ever need to apologise for saying how you are feeling. A hug from caring people makes it much easier to bear.

:)
Hugs
Clare
 

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Thank you for your time

I want to thank all of you for taking the time to read a little bit of me and the issues that I am facing. I do feel that my current doctor is not really doing anything for me but for the moment I had to see him b/c I had no insurance and had to go to a clinic. I did look into getting insurance from the company and found out that I will be eligible for it by next week. I have been making phone calls all day and have found some doctors in the area. I don't know what questions to ask but hope that maybe someone can fill me in with suggestions. I also want to thank all of you because I don't feel so alone anymore and feel better because I have more information concerning my disease.
 

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Welcome Yasmin to the lupus sight and hope you get as much out of it and its people as i have in three years now:) .It can be very depressing this silly disease:mad: I am on two differant anti depressant meds right now and thought i would never start on something like this but have come to realize how silly it is to feel that way.

I do not work anymore because of the dibilatating diseasenthat we have but i am here to support you in what ever i can help you with((((((((((hugs)))))))))).Take care

Tammy
 

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That's great news - feel free to post again and ask any questions you have about a first appointment with a new rheumy or whatever questions come up for you.

Take care....
 
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