Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Just Learning about the Disease


  • Please log in to reply
34 replies to this topic

#1 notlettingo

notlettingo

    Bronze Member

  • Members
  • PipPip
  • 18 posts

Posted 17 February 2011 - 11:40 AM

I have just recently been diagnosed with Mixed Connective Tissue Disease. I have been in a fair amount of pain. Haven't worked for a month and a half. Multiple symptoms. Facial numbness - including teeth - but just because it's numb certainly doesn't say its not causing a great deal of discomfort. Headaches that are out of this world. Raynaud's in my hands and feet. I have intermittent ankle pain that is unbelievable - I almost fall down the stairs when it hits. My hip - keeps clicking. I keep biting my tongue and cheeks, ....But, I'm so tired of reading and don't really know what to think of all this. I'm so depressed about everything that my energy level is near ZERO.

But, I try to laugh often and about much, so, can you help me poke fun of this disease - might help me cope.

Yours, notlettingo

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 17 February 2011 - 02:23 PM

Hi Notlettingo,

Welcome to these friendly and informative forums!

I'm very sorry to read that you're suffering with so many horrible symptoms and that you're feeling so confused and depressed. Although acquiring knowledge of Scleroderma and Mixed Connective Tissue disease is a good thing it's very important to make sure that you don't believe every scare story you read on the internet. The good news is that you've found our forums where you will meet like minded people who understand the worry that you are going through and will share a laugh with you and provide a sympathetic ear and a broad shoulder for you should you need it.

We have a Link to Mixed Connective Tissue Disease and also Dental problems which I hope you'll find informative.

I can empathise with you as it can be very difficult to come to terms with a chronic illness like Sclero or MCTD and it's very normal to feel isolated and depressed. We have a very helpful Link to coping with Emotional Adjustment which I do hope will help you to feel a little more positive. I'm sure some of our other members will also be able to reassure you.

Do please keep posting especially if you are feeling worried or depressed and let us get to know you.

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 17 February 2011 - 05:10 PM

Hi notlettingo, and welcome my love :emoticons-group-hug:

I'm sorry you are dealing with all of these nasty symptoms. It certainly isn't fun. Please know you've come to a group that truly gets it however, many of us suffer from the same stuff. So we're here for you! :flowers:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 17 February 2011 - 05:21 PM

Hi Notlettingo,

Welcome to the Forums. Laughing is by far your best bet! Amanda Thorpe's posts are a great example for how to cope with what seems like an intolerable situation at times.

Have your doctors started any treatment? Some of the medications that seem to help things like pain and fatigue take awhile to kick in, but once they do, things start to get better. It's been my experience that once you get one symptom, like the pain, better managed, it has a positive knock-on effect. For instance, your fatigue may improve too.

For what it is worth, I went through a spell of biting my tongue and cheeks and I have no idea why that stopped, but it did. Also foot/ankle pain - that seems to have decreased too, but whether it is due to medication, natural course of things, or several years of wearing good, supportive shoes ( ;) ), who knows?

So my prescription to you is to rest, take it easy, celebrate the good times, even if they only last a minute, and lastly, find some thought, book, photo - whatever - that makes you laugh and keep it handy. And keep posting. Oh yeah! (brain cramp) the chats are always good for a laugh and some great company.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 17 February 2011 - 06:40 PM

Hello Notlettingo

Welcome to the forums and lovin' the name! A clear statement of intent, start as you mean to go on, and on and on!

Pain is something I am having a major issue with at the moment too, with me it's my feet. The fact that I have my first ulcers on them just adds to the complex and interesting layers of pain...sounds like a whine description...get it? :emoticon-dont-know: Anyway the ulcers are healing but apparently they get MORE painful before they get better and today they have been so painful with sharp stabbing pains that I have actually cried out loud. :emoticon-crying-kleenex:

Did you know there is an actual name for creaking joins? It's called crepitus, seriously it is...I have had it for years in my knees and hips.

Now about poking fun of this disease, whether scleroderma or MCTD, now I'm all up for that :emoticons-clap:! Hmm let me think...oh yeah have a laugh at this, one day I went to the hospital with my husband, I was in my wheelchair and hubby was trying to push me through the automatic disabled door but it wasn't working properly so hubby tried to maneuver me through the gap that had opened and you'll never guess what happened next. You never will so I'll tell you. A man, an able bodied man, decide that not only could he not wait to use the able bodied door but that he couldn't wait for me to go through the disabled door so he jumped over the front of my wheelchair whilst I was sat in it. And do you know what...he had the absolute audacity to look back and smile at me as he ran off! Now if that ain't funny nothing is!

You gotta love the weird 'n' wacky world of sclero and MCTD! :high-five:

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 18 February 2011 - 01:38 PM

Weeelllll...........
I don't have your diagnosis so these are things I have found about CREST that have at least a wry turn.

1) You can volunteer to cut all 50 onions for the barbeque pot luck- Sjogren's will keep the tears away. People will be impressed with your selflessness and stoicism.

2) If you are lucky enough to have a handsome young doctor, you will be able to enjoy the view much more frequently than most of his patients. After all, it takes time to explain those weird symptoms that keep popping up.

3) You will become the reference person for many of your friends on health issues as you will spend a great deal of time on the internet trying to figure out whether the current strange thing going on is due to an autoimmunity problem or something else altogether. And your knowledge will range over a wide area as there are so many variables to this condition. You will learn more about the body than you thought there was to know.

4) You will learn where all the departments of the hospital are located- not only will you save time not having to wander around, you will be able to direct other lost souls who are terribly confused about where they are. And you will know where to park!!

5) You will broaden your aquaintanceships with visits to the lab, pharmacies or other related places. This will mean you stand a good chance of learning the latest jokes, although some may seem to be too related to bodily functions.

6) Speaking of bodily functions, you will get much less squeamish about discussing these things. In fact, you may have to pull yourself up when talking to friends who have not had their horizons expanded by medical problems.

I'm sure there are more that will occur to me later.

I did find that I had to restrict the time I spent researching things when I first was diagnosed. It was easy to be lead from one article to another or to keep looking up those obscure medical terms. It was depressing and exhausting. So I limited myself to a half hour per day. And gave myself a vacation from obsessing every couple of days. It was amazing how much better the world looked.
I hope that your symptoms improve soon. There are many things that help- sometimes just time.

#7 notlettingo

notlettingo

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 18 posts

Posted 18 February 2011 - 04:34 PM

Thanks for your reply. I will try not to get too overwhelmed. I'm not sure even which forum to go to, I have read so much that I'm exhausted. I just want to run away and pretend none of this is true. Thank you for the tips as well.

#8 notlettingo

notlettingo

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 18 posts

Posted 18 February 2011 - 04:56 PM

I have been reading an awful lot about mixed connective tissue disease, it sounds to me like a catch all. They don't really know what is wrong so they lump all the symptoms together and give you a big fancy name just so you'll go away. I'm just curious - among the readers of this, any suggestions as to how long the - angry - stage is?? Right now, and for the last few months of going through this, I am so angry all the time and it is really bothering me. Things get to me that never would have phased me before. My irritation response level is on high alert. Is this normal? Anyone else going through this?? And, admittedly, the Raynaud's, blue fingers, that creeps me right out - scared of losing my digits. I've also read that scleroderma - mixed connective tissue disease is really just a form of arthritis. So really this is nothing right?!?!

#9 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 18 February 2011 - 06:47 PM

Hello Notlettingo

Scleroderma is a rare form of arthritis that can effect the internal organs, I'm not sure about MCTD.

For me I experienced, and still do, the loss of the life I once had and the grief that goes with that loss. According to Elisabeth Kubler-Ross there are 5 stages of grief and loss, denial, anger, bargaining, depression and acceptance. Anger is a natural part of the process and certainly something I have experienced myself as is a heightened sense of frustration. :angry:

Cut yourself some slack, you have a lot to adjust to. :flowers:

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#10 notlettingo

notlettingo

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 18 posts

Posted 18 February 2011 - 11:31 PM

How is it that people that are not going through some painful life changing event have all the answers? And how is it that they feel the need to tell you "it could be much worse". Of course it could be worse, but I'm dealing with this right now and to me, this doesn't feel good.

#11 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 19 February 2011 - 04:03 PM

People who tell you it could be worse are usually trying to say something positive when they don't know what to say or are really trying to avoid the uncomfortable subject without getting seriously involved.
If you really want to discuss this with a few selected friends or relatives, it might help them to understand that you are really upset as there can be so many bad things that are possible. For example, if you are really distressed by the circulation problems in your hands because you have heard that it can cause a loss of your fingers. If they have something specific to think about, they may be more sympathetic. You might even ask them if they think that this would really happen.
I can remember years ago when a person who I barely knew came up and out of the blue told me she had leukemia. I stood there like a deer in the headlights. My brain totally froze. I basically said nothing in response. Now that I am older and more experienced, I would know that she pretty much wanted some warm human contact at that moment and did not expect me to solve her problems. But at that time I probably made her feel worse by my lack of expression. I've always been sorry for that- I could have helped her a bit but missed out. Now I would be more prepared to understand.

#12 uknlv18

uknlv18

    Silver Member

  • Members
  • PipPipPipPip
  • 155 posts

Posted 20 February 2011 - 08:57 AM

Enjoytheride put it very well,

I have had experience with the doctors telling me how lucky I was not to have something worse, and at the time you just want to smack em upside the head and say "what are you talking about!" But it is people trying to say something that they think will make you feel better, and although they may say the most ridiculous things they do mean well. And even family will be at a loss as what to say. I knew a girl years ago that had terrible pain in her face all the time, and I used to think "just take a pill and get over it, what's the big deal". Now I know what the big deal is but there is no going back and changing what we did. For me when I am feeling frustrated and angry about the raw deal I feel I was given, no amount of sympathy or kind words really helps me. The only thing I can suggest is as has been said before in other posts, this is all a process and you will need to work through it in your own way and in your own time. But remember that your friends and family are probably as frustrated as you are and not sure what to do or say and they are afraid they will make you angry or upset if they say the wrong thing.

Many hugs to you and keep posting, just having some place to vent if I need to where the people really do understand what I am going through has helped me alot, and I have only been here a short time!

:emoticon-hug:

Jean

#13 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 20 February 2011 - 12:01 PM

ETR I think anyone would have been a deer in the headlights giving those circumstances. Jean hindsight is a wonderful thing!

Ladies what I find amazing is the determination to do better as a result of being unwell yourselves, no "woe is me" but the want to be more understanding to others as a result of what you have been through and continue to go through. :you-rock:

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#14 Tawanda70

Tawanda70

    Bronze Member

  • Members
  • PipPip
  • 17 posts
  • Location:Waxhaw, NC

Posted 20 February 2011 - 12:08 PM

Can't add much more to what everyone has said on this thread thus far. I was diagnosed at 17, but when you are that young, you never think anything will happen to you. Now that I am 40, the past 3 or so years have been difficult. My first rheumatologist told me "there is no cure, so you are going to have to deal with it!" Needless to say I never went back to him! Family and friends just don't understand, so have them read The Spoon Theory. It will also help you realize how to proceed with this disease.

Good luck and come here often... I no longer google anything. I come here for the real scoop :)

#15 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 21 February 2011 - 12:22 PM

Hi Notlettinggo,

I'm sorry you're not feeling well and sending good wishes your way. I may be wrong (I often am!) but I think there may be some confusion here over the terms "connective tissue disease" and "mixed connective tissue disease". Scleroderma is one of the connective tissue diseases. Mixed Connective Tissue Disease (MCTD) is an illness in its own right, and comprises an overlap of several of the connective tissue diseases.

So I think you might be referring to "undifferentiated connective tissue disease" (UCTD) which is also a real diagnosis. About 50% of people with UCTD never go on to develop a more specific diagnosis than that. It means they have symptoms of connective tissue diseases, but no symptoms or lab tests that add up to a conclusive diagnosis of a single one. The other half of UCTD people eventually go on to get a more precise diagnosis, such as lupus or scleroderma or Sjogren's or even MCTD.

I also felt angry when I was first diagnosed with UCTD, thinking they were just shoving me off to the side and not taking things seriously. And I couldn't figure out how they diagnosed Sjogren's but then still referred to it as UCTD! What was happening was that even though I had Sjogren's, I still had very many symptoms outside of that, and the UCTD was actually an expansion of sorts to indicate that even more than "just" Sjogren's was going on. It tooks years for them to sort everything out, and then I finally ended up with "Multiple Autoimmune Syndrome" (MAS) which sounds like another garbage can diagnosis, but isn't. It specifically comprises a group of certain types of autoimmune diseases occurring together and must include at least one skin disease. Being an over-achiever, I even have more autoimmune diseases than is required for a diagnosis of MAS.

The thing is UCTD is a diagnosis. It might be all the diagnosis you ever achieve, because your symptoms may not worsen or may not become a full-blown version of connective tissue disease. If you plan on being miserable until you get a "real" diagnosis, you might be miserable for years or even a lifetime! Having gone through this myself, I think I felt angry and disappointed because I knew I was very sick, and UCTD didn't sound to me like they were taking my illness seriously.

All I can say is that I was wrong about that. In hindsight I realize they were indeed taking things seriously. They were just massively confused about my symptoms and couldn't sort things out until the illness(es) took certain definite turns. There's no way you can hurry that process up. You aren't failing to be a good patient. They aren't failing to be good doctors. You HAVE achieved an important diagnosis and it is miles ahead of probably-in-your-head-itis, which is where most of us stand before that.

I repeat, UCTD is a real diagnosis. Just because a connective tissue disease hasn't differentiated itself yet, does not mean that you or your doctors have failed in any way. Odds are fifty-fifty that will always be your diagnosis. I do think they should have named it something more important-sounding than that. This is your opportunity to nail down life and health insurance policies before they put an even more restrictive label on your illness.

A person with UCTD can be just as sicker, or even sicker, than someone labeled with scleroderma or lupus. A person with UCTD might develop lupus or scleroderma or be in the initial decade of observation to see if they do accumulate the symptoms of a specific CTD.

An interesting thing is that many rheumatologists do not feel a strong need to differentiate these CTD's -- they have a slogan that it doesn't matter because "they feed all dogs dog food". Which means that they pretty much treat all CTD's the same way, regardless of which one it is.

I have one caveat to this though, which is that prednisone is downright dangerous for scleroderma CTD, but seems to be quite useful for other CTDs. Other than that, they are probably all on fairly even footing.

I am not saying I like or agree with this approach, but just so you know, your doctor probably isn't looking upon you any different than if you had lupus or scleroderma; to them, we are all dogs, and they feed us all dog food! Arff arff! :(
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#16 notlettingo

notlettingo

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 18 posts

Posted 23 February 2011 - 09:35 PM

Um nope. I'm definitely talking about Mixed Connective Tissue Disease. Yes, this is an overlap disease as you have stated, carrying traits of both Scleroderma and Lupus, plus some other disease that I couldn't remember. So, from what I can tell, I could have parts of anything. This apparently was concluded by my test results.

#17 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 24 February 2011 - 12:29 PM

Hi Notlettinggo,

Mixed Connective Tissue Disease is definitely not any sort of a catch-all (often called "garbage can" diagnosis). It clearly indicates the co-existence of two (or more) connective tissue diseases and even has it's own antibody requirements, to boot. So your doctors are definitely taking your illness seriously and you have reached a stage of what is now, at long last probably, a definitive diagnosis that is going to last long term.

If it's any consolation, you're probably "more sicker" than folks with "just" scleroderma or lupus. However, given the similarity between the general term of connective tissue disease, and the diagnosis of undifferentiated connective tissue disease, and the fact that many people use the term mixed connective tissue disease when they really mean undifferentiated connective tissue disease, you're going to face your own battle explaining (like here) that you really DO mean MCTD. And then, there's the whole thing of few people understanding any of the words such as lupus, scleroderma or MCTD!

When I realize that I'm just getting a glazed stare over any of our more obscure disease terms, I simply explain that I have a very severe form of arthritis. Then people smile in recognition -- as in, whew, at long last, she has resorted to English as her primary language!

I'm sorry you have MCTD, Notlettinggo. But it is a very real diagnosis and not just a catch-all. In fact, it is "one-up" from most of us.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#18 notlettingo

notlettingo

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 18 posts

Posted 24 February 2011 - 06:07 PM

Thank you for your info. and kind words. As I mentioned maybe in my first post, I am still in the angry phase, but hearing the kind words people (that can actually relate) have for me is really helpful to me. Of course its helpful to everyone.

Thank you for pointing out that what I have is a real disease. Yes, I have been suffering unmercifully for years and I keep getting told everything is normal - til now! And now that I have a diagnosis, I want to learn what I can, but I still know nothing. I made an appointment to see the rheumatologist again. I have to be able to ask him questions and where am I at with this disease? I just brought home a bunch of meds he is putting me on and now I want to figure out if they are what other people are taking. I still find it hard to believe that I am not being swept under the carpet as I have been all my life! But to be truthful - nothing really makes sense right now!

#19 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 24 February 2011 - 10:50 PM

Hi Notlettingo

I'm a little late on this thread but for what it's worth, my doctor told me that Lupus is a 'very close cousin' to scleroderma and often overlaps with it (but not always of course). Therefore, it would not necessarily be uncommon to have symptoms of both diseases and/or more than those two (ie, MCTD). He includes a panel in my bloodwork for lupus too, always checking. Sounds like your doctor is very good that way too.

No wonder you feel confused! It is quite understandable how that can scare you and make you sad and/or angry at the same time, especially with having so many emotions to face all at once. Maybe think of the MCTD as bits and pieces only of each illness (and not all 3 fully blown diseases) that have symptoms which need to be treated separately in order to help make you feel better. It's kinda like looking at a blemish on an apple, the whole apple isn't rotten (meaning sick) right (only a little piece of it is)...not that I'm comparing you to an apple in any way, shape, or form of course :) .

I am glad you made another rheumatologist appointment, I remember I couldn't get to mine fast enough! I had so many questions rolling around in my head, morning, noon, and night! Don't forget to take some paper and a pen and to go in with all your questions handy or even better, take someone with you to write everything down for you. I found in the beginning my head was spinning and I always forgot to ask this or ask that...only to think about it all the way home again...and once again came the anxiety of not knowing all over again. I know it's hard to believe but things will eventually settle down for you, once you get a better understanding of what is going on. It will also likely help when you know what each medication is for, why you're taking it, and how it's going to help you. I agree with the others, I don't think you are being swept under the carpet this time either. Take care and I hope you keep us updated.
Sending good wishes your way!

#20 notlettingo

notlettingo

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 18 posts

Posted 25 February 2011 - 01:05 PM

Thank you all for your posts - your kind words and suggestions. I really appreciate being able to come to this 'site'. I have already felt the comfort one feels when you can share your feelings with someone and know that they can relate and they too need comfort so they know I need comfort! Thank you and yes, I will keep posting and reading posts!