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Old 02-22-2011, 04:13 PM   #1
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Unhappy MCTD and Fibromyalgia

I saw the Rheumatologist for the second time today. He made me wait over an hour and then showed absolutely no interest in discussing anything at all with me about anything. I barely managed to tell him a couple of things and he just said, its the disease. or, it the fibromyalgia. I've been dealing with fibromyalgia pain for over 20 years, just recently tho is when the Raynaud's paid a visit - none too friendly either! WOW, when the fingers finally warm up, its like someone slammed them in the car door! So, of course, I've only just been diagnosed with MCTD as well. But, neither Dr. nor Rheumatologist has said exactly what I'm dealing with, I don't know anything, is it gonna get worse than this, what?? I asked him if I would be able to work again, and he said, it depends, if you become well enough, then maybe. from the research I've done on MCTD, it seems to me like after you are diagnosed with that, there is nothing more to discuss. Every smptom, will get thrown in that bag, regardless, and something else could be really wrong, but since I have MCTD
awe crap, I', just so upset about my apt. All he wanted to do was write me a prescription today, he had absolutely no intention of discussing anything. Is, that it? Now, whats the point in ever even going to the Dr.s everything is going to be blamed on the "disease" or fibromyalgia. I feel so defeated. I was looking forward to this apt. I thought he would explain it. discuss possible ways to alleviate the pain, something, anything, but nope. Nothin. just how the pills might make me feel. Hmmmp

 
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Old 02-22-2011, 05:06 PM   #2
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Re: MCTD and Fibromyalgia

Sounds like my current rheumotologist. I will be changing insurance plans come July. Mine also blames everything on the fibromyalgia since my ana is negative. I have the symptoms of sjogren's, diagnosed with sicca syndrome, have the lupus malar rash, so I was once upon a time was diagnosed with MTCD. I didn't feel bad back then and when the reynauds acted up I just put my hands under warm water.
For me, since my symptoms have worsened, I just want a real diagnosis to take away the fear

 
Old 02-23-2011, 01:41 AM   #3
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Re: MCTD and Fibromyalgia

I have both MCTD and Fibromyalgia. Well fibromyalgia is kind of being second questioned since the MCTD diagnosis but it's quite easy to tell my doctor still thinks I have it or else doesn't believe me, because I've been having back & neck pain with neuropathic symptoms pretty bad, intolerable pain keeps recurring, I haven't had an MRI and have been going through this almost 2 yrs, and last time I saw him he said he thought it was muscle, cause another doctor recommened I get an MRI, so I know he thinks it's fibromyalgia. I don't like that problems being scooped up under the rug like that. When you have new symptoms occuring, it really should be looked into, regardless if you have a current condition. I've had renal stones blamed on interstitial cystitis.
What medication was you put on for the autoimmune disease? That can be relieving for the pain. I did awesome on plaquenil for a few mths but it's not so great anymore. MCTD for me has been alot of muscle pain, joint pains with exercise, hip pain, spasms, myofacial pain, muscle weakness, have exercise intolerance, and severe fatigue, unable to work, depression from it. I have esophageal, stomach, and bladder inflammation. Had low vitamin levels last year. Nothing serious. I don't swell up, and I do not have heart or lung disease as I know of. My lungs should be junked though with my smoking habits. My blood pressure has been showing some mild high results lately but I think it's overall okay. MCTD is more known to attack your heart and lungs. The heart issue runs in my family really bad but MCTD doesn't. I don't have Raynaud's, find that weird, but my RNP and ANA is really high. I also don't have positive inflammatory markers (ESR, RF), do you have those markers with your MCTD? I have had a mildly elevated total protein but I have no idea if that meant anything toward the inflammation in my body. Yes the illness can get worse for you, but that doesn't necessarily mean it will. I am worse in how I feel, but I am lucky I have nothing serious from this.

 
Old 02-23-2011, 09:29 AM   #4
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Re: MCTD and Fibromyalgia

hi. thanx for your reply. I'm not sure about much, but I do remember my Dr. saying it was weird that my inflamitory markers werent up. I haven't been very involved in my diagnosis, or anything. I have a hard time talking to Drs. I just feel so overwhelmed by all this. I have not been tested for heart troubles. That Dr. doesn't seem interested in anything. I think I might have to just try to not think about any of this. I haven't worked in over 6 weeks, have zero income and really have no clue what to do or the energy to do it. All I really know is that I am sooooooooo angry! I just can't seem to get control of it! it really needs to be harnessed! any tips?? I want to run away, but can't afford to! LOL

 
Old 03-29-2011, 10:35 AM   #5
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Re: MCTD and Fibromyalgia

You really need to find a rhematologist you like, and one that will talk to you. I think the only thing they can do is keep an eye on you through blood work, and do scans if necessary, and treat you with medication. How is that medication working out that he gave you? I had 3 good months on plaquenil, on 400mg, it alleviated my pain and fatigue. If they get you on the right combination of medications for this disease, it could make all the difference in the world. I have had severe fatigue for along time. For a medication to change that, was amazing. I know the right stuff will help me. I think that is about all we have to depend on when our immune system isn't working right. Anger is normal, denial, depression, feeling like you can't take it one more day. I've been there. All you can do is either take the choice of letting it kill you or fight it, which means making yourself stay out of bed, doing the things you'd normally do if you wasn't sick. I know that is hard, but I have to tell you after 14 years of caving in, it is so much easier to do, than giving up.

 
Old 03-30-2011, 02:14 PM   #6
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Re: MCTD and Fibromyalgia

I'm not on plaquenel, but chloroquine and adalat. He just increased the adalat but said he would never increase the chloroquine above 1 pill! when I saw him yesterday all he wanted to do was increase my meds. (adalat) last time he said if my hands were still bad he'd do cortizone shots, and he would likely have me see one of his collegues bout heart and lungs. But, he said exactly the same thing this time, and almost word for word. He is about a hundred years old too, so I don't think maybe he is the best Rh, for me anyway! he asked me if the adalat was giving me headaches. I said I wouldn't know as I always have headaches. he said, maybe I should have said any new headaches. Then I asked if the meds would help with the joint pain eventually, he said yes and that yes it will, and just like that, the apt over! I don't know what to expect from him or the medication. He said the chloroquine is to reverse the disease - can this really happen?? I thought there was no cure for MCTD so what is he talking about? and why are my wrists getting so sore?? It seems like everything hurts way more than it should! Partly tho too, I have been in pain for so many years that I think this disease was progressing and because I was used to the pain I had no idea this was in me!? Maybe it has just gotten to the point where it is real bad and that is why the pain is harder to control?? and will the medication actually reverse the problem or just slow it down? The Dr. said the muscle aches I feel in my back and neck have nothing to do with MCTD, but probably Fibromyalgia, but seriously, sometimes it feels like someone has been kicking me in the head! Sorry I am just rambling on, but I really need someone to talk to and this support is good in so many ways! So, thank you to those of you that reply. Supporting one another is bound to be good for us!

 
Old 03-30-2011, 05:03 PM   #7
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Re: MCTD and Fibromyalgia

Chloroquine may help. It's an antimalarial like plaquenil. Same with both, you need eye tests done, long term use can cause retinal toxicity and make you lose your sight if not caught early.

When I was taking doxycycline, it's an antimalarial antibiotic, it took my RNP levels down by half and I was feeling better, more energy, less pain.

The antimalarials lower your autoantibody level, and can help fight inflammation. I developed a tolerance to the medication so it does nothing for me now.

You can have your autoantibody levels checked (RNP and whatever else is high) and see how the cholorquine is working after a couple of months. If it doesn't change your RNP, it may not be working. Doctors say it takes awhile for antimalarials to work, like 3 to 6 months. You should be feeling better on it or it likely isn't doing what it needs to be.

No, you cannot cure MCTD but the medications can help it go into remission. Yes antimalarials can do that, immunosupressive medications, even prednisone helps fight it.

The other medication your taking is for high blood pressure & angina.

Where is your back/neck pain? Is it over into a muscle or directly in your spine. My tender spots are directly in my spine. If a muscle is flaring, it's on over into a muscle, and I get to where I can't move one way without pain, that only lasts about a week, I can take a muscle relaxant and see ya. My doctor thinks it's my fibro but it's not in my muscles and I know what muscle pain feels like. Muscle relaxants haven't phased my back pain. But I just wondered because if you have a problem in your thoracic or cervical area in your back, it could be causing your headaches. I had them all the time too but neurontin has done alot to help my back pain, and the headaches have stopped.

Yes it is good. I don't get family support. They are so mean to me with my health problems. But I know how to dish it back out. LOL..

 
Old 04-15-2011, 02:27 PM   #8
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Re: MCTD and Fibromyalgia

hey there mybody, don't give up!!

You will figure it out. But between now and then, take care of yourself in a new tender way. Treat yourself to a cup of tea or a walk or a pedicure, whatever you can afford to do, and then promise yourself that YOU are the boss of your body and YOU will get answers and get control.

I have been diagnosed with MCTD (+ANA and +anti-RNP and other stuff) for 6 months. I'm on drugs (plaquenil, prednisone & MTX). They're a pretty standard mixture, and they are slowly addressing my symptoms.

Yes, heart and lungs can be affected by MCTD, but that is pretty rare. So, rather than driving the car into the tree by staring at those unlikely statistics, I've been focusing on the fact that, eventhough I have pain, I'm alive. I will live a long time, and now have to figure out how to make the best of my long life in this new normal.

So, I don't play soccer or do yoga anymore, but I swim 3 days a week and do *ridiculous* Zumba!! But it's hysterical! I hang out with all these hardcore old ladies!!

Do this: research MCTD. Document your symptoms. Totally psych yourself up to think of your diagnosis as a project, and seize control of it. Arm yourself with questions before your next DRs visit. Don't allow yourself to be defeated or dismissed. Be smart, perky, defiant! You can do it, the world is conspiring to help you!!

Keep us posted...

 
Old 05-06-2011, 03:51 PM   #9
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Re: MCTD and Fibromyalgia

Its been quite a while since I was on this site. I have been trying desparately to rid the pain in my fingers. The aching, tingling/zinging, fire burning, numb but not numb. I feel like it is getting worse instead of better! I am getting so frustrated with this friggen raynauds. I no longer enjoy being on the computer cuz my fingers hurt so much when I do and if they start freezing I cant feel the keys properly and it is even harder to type. I basically sit/lay in my in my bsmt suite - in the dark. watching tv mostly. I can't use my fingers at all without them screaming at me and the pain meds constipate me so bad - caught between a rock and a hard place. Any ideas for relief?? It seems that laying down makes my hands worse - I will wake up and they feel like they are on fire, just sizzling, but when I stand up - the burning goes down. right now as I type, my left hand is on fire, just a zinging away and my right hand is cramping and stiff with tingling. Im getting pretty cranky with this whole business and I just don't know how to handle this any more. Sometimes my hands feel like they've been slammed in a car door! anyway, any suggestions would be awesome!

 
Old 05-08-2011, 05:54 PM   #10
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Re: MCTD and Fibromyalgia

Quote:
Originally Posted by sunsideup View Post
hey there mybody, don't give up!!

You will figure it out. But between now and then, take care of yourself in a new tender way. Treat yourself to a cup of tea or a walk or a pedicure, whatever you can afford to do, and then promise yourself that YOU are the boss of your body and YOU will get answers and get control.

I have been diagnosed with MCTD (+ANA and +anti-RNP and other stuff) for 6 months. I'm on drugs (plaquenil, prednisone & MTX). They're a pretty standard mixture, and they are slowly addressing my symptoms.

Yes, heart and lungs can be affected by MCTD, but that is pretty rare. So, rather than driving the car into the tree by staring at those unlikely statistics, I've been focusing on the fact that, eventhough I have pain, I'm alive. I will live a long time, and now have to figure out how to make the best of my long life in this new normal.

So, I don't play soccer or do yoga anymore, but I swim 3 days a week and do *ridiculous* Zumba!! But it's hysterical! I hang out with all these hardcore old ladies!!

Do this: research MCTD. Document your symptoms. Totally psych yourself up to think of your diagnosis as a project, and seize control of it. Arm yourself with questions before your next DRs visit. Don't allow yourself to be defeated or dismissed. Be smart, perky, defiant! You can do it, the world is conspiring to help you!!

Keep us posted...
I love your attitude!! You're a breath of fresh air! How's that Zumba working out for you? I thought about trying something like that... I think it's something I need to work up to. Baby steps at first. Us Jersey girls are tough...never say die!

All the best to you!
sharon

 
Old 05-28-2011, 01:01 PM   #11
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Re: MCTD and Fibromyalgia

I have been on the meds for MCTD for about 3 months now. This morning when I woke up, it felt like my fingers were almost better! I still have tingling in a couple fingers, but even the stiffness is less. Does that mean I'm almost cured and can get off all these meds?? That would be very cool! even the swelling went down too! but then I saw my purple toe and I kindof freaked. Dont know why it caused fear, but it did. Anyway, I would sure love to get off these meds. I would love to hear from you, I would love to believe that this is getting better!

 
Old 06-21-2011, 05:41 PM   #12
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Re: MCTD and Fibromyalgia

Quote:
Originally Posted by sunsideup View Post

Do this: research MCTD. Document your symptoms. Totally psych yourself up to think of your diagnosis as a project, and seize control of it. Arm yourself with questions before your next DRs visit. Don't allow yourself to be defeated or dismissed. Be smart, perky, defiant! You can do it, the world is conspiring to help you!!

Keep us posted...
Your optimism is infectious!! Made me teary eyed!

 
Old 07-10-2011, 01:01 PM   #13
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Re: MCTD and Fibromyalgia

Have you found a different Rheumatologist that you like?? I am happy that your symptoms are going away. That gives me a little hope as well.

Since it's been a while, how are you doing now?? Are you still feeling some relief or even more relief?? Please update us.

 
Old 07-20-2011, 09:07 AM   #14
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Re: MCTD and Fibromyalgia

Hey Mybodies given up
my name is Louise,
And Omg when you typed that I thought its so true, I'm like in the same place and my rheumy is like "The pain may be worse because your thinking it is" and then he does nothing. I completley understand it is the most frustrating thing going. I go to him every three months and he doesn't help, my symptoms are something I should just live with. I'm sorry to rant, but I've never met somebody who is in the same frame of mind, I think we might be able to help each other and sort this out,
Lots of Love
Louise

Last edited by Louisiania; 07-20-2011 at 09:10 AM.

 
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