MCTD (Mixed Connective Tissue Disease)

Posted by EllashaB @ellashab, Oct 3, 2011

Ok, here goes my story….4 Weeks ago I was diagnosed with Mixed Connective Tissue disease…I am normally a busy busy person, I work full time as a police officer, volunteer at my church, work a lot of off duty, and I have Three Boxer Dogs that I show, and I’m married…so I have a lot going on and this has pretty much put a stop on everything…I’m on 30mg of Prednisone, Plaquenil, Imuran, and Amitriptiline (for depression, anxiety), and Nexium twice a day…Some days I’m fine and other days I can’t get out of bed either because I’m so tired or I’m having a flare. I would just like to talk to other people who have this disease and who can relate to me. I feel like I’m losing my mind and body for that matter…..Is it always going to be like this? How do I slow myself down? The concept just seems so alien to me….HELP

@seanlroop

I am trying diet and exercise as I can, but doing hormone replacement therapy with Sustanon (testosterone), prednisone, HGH and HCG.

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What would be a good diet for this and exercise?

@liyana

Thank you for advice. Are you on treatment for it.

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I go to a naturopathic doctor. I take probiotics and multi vitamins and iron and B 12 because I have a motility/esophagus issue and don’t absorb the nutrients. I am gluten free. When I’m really tired I rest as much as I can. Trying to avoid the prescription drugs as I also have a very sensitive stomach and don’t tolerate many drugs.

@jolynn60

IBS, TMJ, Ringing ears, Sleep Apnea, Anemia, Arthritis, Mild bone loss and now Narcolepsy! Don't know where to turn. This has been going on for years but recently seems to be getting much worse. I fall asleep driving to work and sometimes coming home. Instead of going somewhere on my lunch hour I take a nap on my desk. As soon as I get home I ready for bed. Tonight I'm fighting to stay awake to post this in hopes of finding someone who might be able to point me in the right direction. I'm taking Nuvigle to stay awake and ambien to stay asleep at night. Also use a cpap machine. My neurologist has ordered another sleep study to confirm his diagnosis of Narcolepsy. Oh and of course my short term memory is out the door. I've missed so much work I'm suprised I still have a job. Can't stay awake any longer. Hope someone can relate. Desperate for answers.

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I have exactly the same symptoms. I have been off work since November 11, 2017. This comes from a guy that missed 10 days of work in 29 years. Mayo calls it central sensitization syndrome. What we have found is that it is related to adrenal fatigue and at some certain point it pushes it so far that it turns into Addison’s where are your adrenal gland is not secreting any cortisol at all. I have tried antivirals I have tried antibiotics I have tried antifungal’s been through 11 doctors and finally went to Mayo. I have a nurse that has been predicting this since the beginning that it was adrenal fatigue syndrome. So now I’m on prednisone and getting ready to do a regime of testosterone while seeing my local Endocrinologist. He is basically giving me a go ahead for this. Initially the prednisone was too low so I didn’t feel the full effects. Then I was doing it twice a day with more and felt better, but still not fully awake. I had been sleeping 2 to 3 days at a time and the time that I was awake was almost negligible because I wasn’t in any frame of mind to be doing anything. You start getting a feeling of worthlessness which just makes you depressed and drives this thing because it is a fight or flight type response that your body has which needs cortisolso you’re caught in a Catch-22. Thankfully I started taking it three times a day for 120 mg total 4040 and 40. This seems to do the trick or at least us far it has. The type of test tossed around that I’m going to be doing is not the cypionate that would normally be prescribed but rather such an on which is five different types of testosterone that are androgenic. At this point since 11 doctors of failed me and basically mayo has told me that I’m going to be very limited in what I can do and my entire life is going to be turned Upside down just to deal, that I really do not care what anyone thinks about this if it works well. Am I going to shorten up my life by taking prednisone every day at 120 mg almost certainly. However, I had no semblance of a normal life without it. The lack of testosterone will accompany it because it’s also secreted by the adrenal gland. I am not a doctor so I’m not giving you medical advice I’m just telling you what I’m doing and what has worked for me when nothing else has. Go have your cortisol level drawn and have the ACTH test That stress is your system to make your adrenal gland secrete cortisol. Mine actually did do it but it made me so sick and bloated for about six hours after the test that something was wrong. When I went back and looked at the lab work I had

@seanlroop

I have exactly the same symptoms. I have been off work since November 11, 2017. This comes from a guy that missed 10 days of work in 29 years. Mayo calls it central sensitization syndrome. What we have found is that it is related to adrenal fatigue and at some certain point it pushes it so far that it turns into Addison’s where are your adrenal gland is not secreting any cortisol at all. I have tried antivirals I have tried antibiotics I have tried antifungal’s been through 11 doctors and finally went to Mayo. I have a nurse that has been predicting this since the beginning that it was adrenal fatigue syndrome. So now I’m on prednisone and getting ready to do a regime of testosterone while seeing my local Endocrinologist. He is basically giving me a go ahead for this. Initially the prednisone was too low so I didn’t feel the full effects. Then I was doing it twice a day with more and felt better, but still not fully awake. I had been sleeping 2 to 3 days at a time and the time that I was awake was almost negligible because I wasn’t in any frame of mind to be doing anything. You start getting a feeling of worthlessness which just makes you depressed and drives this thing because it is a fight or flight type response that your body has which needs cortisolso you’re caught in a Catch-22. Thankfully I started taking it three times a day for 120 mg total 4040 and 40. This seems to do the trick or at least us far it has. The type of test tossed around that I’m going to be doing is not the cypionate that would normally be prescribed but rather such an on which is five different types of testosterone that are androgenic. At this point since 11 doctors of failed me and basically mayo has told me that I’m going to be very limited in what I can do and my entire life is going to be turned Upside down just to deal, that I really do not care what anyone thinks about this if it works well. Am I going to shorten up my life by taking prednisone every day at 120 mg almost certainly. However, I had no semblance of a normal life without it. The lack of testosterone will accompany it because it’s also secreted by the adrenal gland. I am not a doctor so I’m not giving you medical advice I’m just telling you what I’m doing and what has worked for me when nothing else has. Go have your cortisol level drawn and have the ACTH test That stress is your system to make your adrenal gland secrete cortisol. Mine actually did do it but it made me so sick and bloated for about six hours after the test that something was wrong. When I went back and looked at the lab work I had

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Part two apparently they only allow you so many characters. But my cortisol level at baseline was

@jolynn60

IBS, TMJ, Ringing ears, Sleep Apnea, Anemia, Arthritis, Mild bone loss and now Narcolepsy! Don't know where to turn. This has been going on for years but recently seems to be getting much worse. I fall asleep driving to work and sometimes coming home. Instead of going somewhere on my lunch hour I take a nap on my desk. As soon as I get home I ready for bed. Tonight I'm fighting to stay awake to post this in hopes of finding someone who might be able to point me in the right direction. I'm taking Nuvigle to stay awake and ambien to stay asleep at night. Also use a cpap machine. My neurologist has ordered another sleep study to confirm his diagnosis of Narcolepsy. Oh and of course my short term memory is out the door. I've missed so much work I'm suprised I still have a job. Can't stay awake any longer. Hope someone can relate. Desperate for answers.

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@corajanewiggins – thank you for figuring this out and sticking by my side always! I love you dearly, as my nurse and my partner. Pretty nice to be living with an RN when something like this happens!

IBS, TMJ, Ringing ears, Sleep Apnea, Anemia, Arthritis, Mild bone loss and now Narcolepsy! Don't know where to turn. This has been going on for years but recently seems to be getting much worse. I fall asleep driving to work and sometimes coming home. Instead of going somewhere on my lunch hour I take a nap on my desk. As soon as I get home I ready for bed. Tonight I'm fighting to stay awake to post this in hopes of finding someone who might be able to point me in the right direction. I'm taking Nuvigle to stay awake and ambien to stay asleep at night. Also use a cpap machine. My neurologist has ordered another sleep study to confirm his diagnosis of Narcolepsy. Oh and of course my short term memory is out the door. I've missed so much work I'm suprised I still have a job. Can't stay awake any longer. Hope someone can relate. Desperate for answers.

Welcome to Connect, @jolynn60,

You are not alone in experiencing the frustration of having multiple diagnoses – as @seanlroop has shared (thank you).
You may notice that I moved your discussion and combined it with this existing discussion as people with mixed connective tissue disease (MCTD) have symptoms that overlap with several connective tissue disorders – https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147
I also thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

You might also be interested in reading and participating in this discussion on narcolepsy: https://connect.mayoclinic.org/discussion/narcolepsy-1/
I'm tagging Mentor @gman007 as he may have some thoughts to share about Nuvigil.

@allfatiguedout

I was diagnosed in January when all of a sudden I spent a week not being able to get out of bed. I put it down to flu but remember saying that i just dont seem to have other symptoms other than tiredeness (Extreme tiredness!). Thats when it began. Got diagnosis of mixed connective tissue disease and am now on hydroxychlorine. My main issue is the tiredness. Since my flare up that was so bad in January, I’ve never been the same. I am tired all the time. I am a single mum of a boy aged 9 and I’ve been soo active with him in school holidays and done so much with him all these years. this year is the first year, I have done nothing – literally. He’s like, mum why are you always just resting? i cant even take him to legoland or for a run in the park with a football. Well, i can, but then I’ll be knocked out for the next two days. This is really starting to get me down too, alot. No one seems to get it. Im not just making it up, when i say I’m tired, I am exhausted. I can be ok for an hour and then if you see me two hours later, I’m in zombie state. so unpredictable. EllashaB, I feel for you. This is new for me too. I also need advice on how to slow down. I have a full time demanding job also. Some days i just cant think straight now. HELP 🙂

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I was seen by a Rheumatologist and told I had hyper mobility syndrome , chronic fatigue and a MCTD diagnosis was inconclusive . I get extremely tired like with the flu ,stiff and painful joints and foggy headed . I can.be active for a few days but the symptoms hit and I can barely get out of bed. Exercise used to help but now I have to pace myself with mod exercise – walking, leisure swim that’s about it.I work full time but spend my weekends in my pajamas recovering from exhaustion. I would like to see a specialist at mayo but not sure which Specialty to request . Any suggestions?
Lisa

@soteloli

I was seen by a Rheumatologist and told I had hyper mobility syndrome , chronic fatigue and a MCTD diagnosis was inconclusive . I get extremely tired like with the flu ,stiff and painful joints and foggy headed . I can.be active for a few days but the symptoms hit and I can barely get out of bed. Exercise used to help but now I have to pace myself with mod exercise – walking, leisure swim that’s about it.I work full time but spend my weekends in my pajamas recovering from exhaustion. I would like to see a specialist at mayo but not sure which Specialty to request . Any suggestions?
Lisa

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Hi @soteloli, welcome to Connect. I think Mayo Clinic would be a good choice for you. They are very good at diagnosing health issues that are difficult to diagnose. Can you ask your rheumatologist to give you a referral to Mayo Clinic?

If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

https://www.mayoclinic.org/appointments

John

@kellyclayborn

Hi,
New to this site, but my Mom has been encouraging me to contact the Mayo Clinic to help me regain my quality of life. In 2008 I was diagnosed with cervical stenosis. I was told it was severe and needed surgery ASAP. I was working for a great hospital at the time, was recommended the best neurological practice at the hospital. The neurosurgeon decompressed and fused my spine from C3 to C7 posteriorly. When the surgery was complete and they were turning me over, something went a rye. All the bells & whistles went off that were monitoring my nerves & spine. They immediately took me in to have an MRI and found nothing to be wrong. When I woke from surgery, my surgeon, his assistant and my husband were all there and the neurosurgeon asked me to move my fingers, hands and arms. The only thing I could move was my fingers a tiny bit. The neurosurgeon had an “oh shit” look on his face. He then went on to explained what had happened after surgery. My life has never been the same since. I had to relearn how to use my arms & hands which took almost a year. It has left me with chronic pain in both my arms & hands. While going through OT/PT it left me with tears in both rotator cuffs which eventually healed. So during this year while dealing with these issues, I was trying to get my pain managed and under control. Was referred to pain management facility cuz they had to give me very strong opioids and it was tricky to find the right combination. While I jumped from one opioid to another,my pain was getting worse and more difficult to manage. During this first year of while trying OT/PT i began swelling up and was showing signs of possibly RA, so thus was sent to RA specialist. After working with him for the last two years and being now diagnosed with inter-connective tissue disorder. I have been put on several different types of medicine to keep my symptoms at bay but between the chronic pain in my arms from the spinal cord injury and now the inter-connective disorder I AM MISERABLE. I have no energy, everything hurts all the time, including walking. Early on,they had been giving me prednisone to help but I gained almost 75lbs since the surgery in 2008. I don’t take that medicine anymore. I have since managed to fall break my foot and had to have surgery (this was from being to drugged in managing my pain). Then when checking my nerves in my arms & hands with an EMG test, it was discovered that my ulna nerve was being crushed in my right arm. I was loosing functionality in my right hand, so they did surgery to correct that. I still have difficulty with my right hand, so maybe it wasn’t just an ulna nerve problem? I was told that my right hand difficulties could be coming from my spine, from the original surgery.

So hear I am,trying to explain this very complex situation (but there is so much more as with everyone’s situation) but I’m trying to keep this short. That and it hurts to type, or work at a computer for anymore than an hour at a time. I WAS a type “A” person, worked as a police dispatcher, flight for life dispatcher, volunteered for the police department. I have a husband, two grown kids (out on their own), 4 Grandkids any my elderly Mom who all counted on me to be there to take care of things. I now live with chronic pain on a daily basis due to the spinal cord injury, inter-connective tissue disorder, recovering right now from my arm and foot surgery, I also attended a rehab center to change my chronic pain drug which were opioids to a synthetic opioid which was to help with withdrawals since I was on so many pain drugs and it was to help manage my pain but it’s not helping as I would have liked it to. I still take an opioid and anti-anxiety drug, nerve pain drug, antidepressants, muscle relaxors and a handful of drugs from the RA doctor. He is now suggesting that I get monthly drug transfusions to manage my ICTD cuz now it’s spreading to my hips which is making it very difficult to walk. This is really scaring me.

So you ask why I would post on this site, like I said encouragement from my Mom, family and friends to see if we can get part of the old Kelly back. I’m willing to keep trying to get better but it’s very hard day after day living with the pain and all the drugs but especially when you feel like your not getting better only worse. I really want a doctor or facility to look at my whole picture and see what could be done to regain some of my strength, energy, maybe even become pain free.

One of the questions that I keep asking all the doctors is the spinal cord injury after the surgery and the ICTD possibly related? Most doctors have said no,but I did find a doctor that said hmmmm maybe. He went on to explain that maybe I was allergic to the metal that fused my spine together. So I got on the Internet and did some research and found that sometimes the metal, like titanium (mine was titanium) has a small percentage of nickel in it. It’s like when you wear cheap earrings or cheap jewelry your skin or body can react to it. I was asked if I had any metal allergies. I didn’t think so, but I know when I put earrings in that have nickel in them my ears puff up, turn red and get infected. It got me to thinking that could it be that I’m allergic to the metal in my neck. I was never tested for metal allergies, so I had a skin test for different kinds of metals. Those tests came back pretty much clear, but in my Internet research I found out that you need to have a specific blood allergy test called MELISA test. There is a website called http://www.melisa.org that has lots of info regarding this test. My problem has been finding the right doctor to get this test performed for me and wanting to get a lot of my questions answered, like……i.e. If I am allergic to the metal, can I take it out? Will my spine stay stable? Is it causing the symptoms of the ICTD? If I am allergic, has the metal already poisoned my body or could my body heal itself if it’s taken out? My ICTD didn’t start until after my surgery, so I somehow feel it’s related. I feel that I can deal with the spinal cord injury issues. I’ve gotten back some of my use in my arms & hands but there are still some issues that I have to work with. The constant pain in my whole body now especially my joints, the fatigue and all the drugs. I just would like someone or someplace to help me sort all of this out, do the MELISA test for my own piece of mind and help me get healthy and feeling better again. I’m on disability now, it’s hard to function somedays just even staying home trying to take care of myself. My family worries about me being home alone, since I’ve fallen several times already. I WANT MY LIFE BACK,or some sense I’m in control.

If anyone reads this and can help, or give me their input, I would really appreciate it. If there is a doctor that works at the Mayo Clinic that stumbles upon this and feels moved to help, I would be very grateful. I have family and friends that count on me, especially Grandkids I would like to see grow up.

Thank you for taking the time to read and listen. Look forward to hearing from you.

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Hi:
Yes, you can get that metal test done. I went to a Dentist that specializes in taking mercury out of mouths and the first thing she did was a metal testing panel and yes I had the same reaction when I had my foot surgery the freken metal fell apart in my foot and the surgeon had to take it out of my foot. You can also go to an Environmental Doctor too, and ask for that test. I can’t see why a Regular Doctor can test you too. Just tell them the name of the test. I am so sorry what you have to go through, I been down that road but yours is much more severe. What is ICTD? I have Ehlers Danlos Syndrome Take Care

@soteloli

I was seen by a Rheumatologist and told I had hyper mobility syndrome , chronic fatigue and a MCTD diagnosis was inconclusive . I get extremely tired like with the flu ,stiff and painful joints and foggy headed . I can.be active for a few days but the symptoms hit and I can barely get out of bed. Exercise used to help but now I have to pace myself with mod exercise – walking, leisure swim that’s about it.I work full time but spend my weekends in my pajamas recovering from exhaustion. I would like to see a specialist at mayo but not sure which Specialty to request . Any suggestions?
Lisa

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Hi:
Mayo does not have a good Department for EDS. You need to find a specialist in that field but for you, you would have to find 2 Specialists, one for each.
Take Care

@soteloli

I was seen by a Rheumatologist and told I had hyper mobility syndrome , chronic fatigue and a MCTD diagnosis was inconclusive . I get extremely tired like with the flu ,stiff and painful joints and foggy headed . I can.be active for a few days but the symptoms hit and I can barely get out of bed. Exercise used to help but now I have to pace myself with mod exercise – walking, leisure swim that’s about it.I work full time but spend my weekends in my pajamas recovering from exhaustion. I would like to see a specialist at mayo but not sure which Specialty to request . Any suggestions?
Lisa

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Hello @soteloli,

I'm so glad you've joined this group and reached out to the Connect community with your concerns – welcome.

First, I'd like to offer some information about your diagnosis of hypermobility (also known as Joint Hypermobility Syndrome), and perhaps clear up some misconceptions about the link to Ehlers-Danlos Syndrome (EDS).
It is possible to have joint hypermobility without necessarily having EDS, but sometimes, patients with joint hypermobility also have the hypermobile type of EDS.

According to the Ehlers-Danlos Society, https://www.ehlers-danlos.com/what-is-hsd/:
Hypermobility spectrum disorders (HSD) are a group of conditions related to joint hypermobility (JH). HSD are intended to be diagnosed after other possible answers are excluded, such as any of the Ehlers-Danlos syndromes (EDS) including hypermobile EDS (hEDS).

EDS is a group of inherited connective tissue disorder (ICTD) that affect your connective tissues. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body.affects the production or processing of collagen. https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125

Although there is substantial overlap in the symptoms between EDS subtypes and other connective tissue disorders including hypermobility spectrum disorders, there is a lot of variability, so a definitive diagnosis for either condition can be complicated.

Mayo Clinic in Rochester, Minn., is ranked among the Best Hospitals for rehabilitation by U.S. News & World Report, and I would sincerely encourage you to call Mayo Clinic at the contact information that @johnbishop has provided. Our representatives/schedulers will ask questions to help direct you to the best specialist.
I'm also tagging @jigglejaws94 and @findinghope23 who've mentioned hypermobility and/or hypermobile EDS, to see if they might have some more thoughts to share.

Lastly, (at the risk of giving you even more to read), I'd like to offer some information about EDS care at Mayo Clinic. Mayo Clinic doctors see hundreds of people with Ehlers-Danlos syndrome every year. The Connective Tissue Disorder Clinic, https://mayocl.in/2zPPxQY diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease
The goal at Mayo Clinic is to establish a long-term management plan for people with these disorders is to be managed by their local primary care physician.https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/care-at-mayo-clinic/mac-20362179

Let me know how else the Connect community can help, @soteloli and also if you need any further information?

Stress will cause you to need more prednisone to create more cortisol – fight or flight. This may be the reason for the up and down days. Unfortunately, this is a trial and error, as I am finding, but cortisol solved A LOT of my symptoms. Please look up my last post by Sean L. Roop. It gives you my symptoms and my journey through hell to get to a somewhat simple answer. Sounds like you are on the right path, but just may need some adjusting. Also check your hormone levels, especially testosterone total and bio-available. I am also taking androgenic testosterone to supplement my 97 ng/dL bio-available test. Both cortisol and testosterone low levels is a problem with your adrenal gland – Adrenal Fatigue (like a touch of Addison's, if that makes sense). Look up Addison's Disease and read about it. I am betting you have at least adrenal fatigue, as almost 67% of the nation post 9/11/2001 have at least some. No wonder we are all so tired. We are all worried about the world in general, whereas we lived in a basic fantasy land up until that marked day. So sad, really. All my best to you on your journey. Sean L. Roop BTW – GET A GOOD ENDOCRINOLOGIST!!!!! A GOOD ONE!!!!!

Liked by judyvv1936

@seanlroop

Stress will cause you to need more prednisone to create more cortisol – fight or flight. This may be the reason for the up and down days. Unfortunately, this is a trial and error, as I am finding, but cortisol solved A LOT of my symptoms. Please look up my last post by Sean L. Roop. It gives you my symptoms and my journey through hell to get to a somewhat simple answer. Sounds like you are on the right path, but just may need some adjusting. Also check your hormone levels, especially testosterone total and bio-available. I am also taking androgenic testosterone to supplement my 97 ng/dL bio-available test. Both cortisol and testosterone low levels is a problem with your adrenal gland – Adrenal Fatigue (like a touch of Addison's, if that makes sense). Look up Addison's Disease and read about it. I am betting you have at least adrenal fatigue, as almost 67% of the nation post 9/11/2001 have at least some. No wonder we are all so tired. We are all worried about the world in general, whereas we lived in a basic fantasy land up until that marked day. So sad, really. All my best to you on your journey. Sean L. Roop BTW – GET A GOOD ENDOCRINOLOGIST!!!!! A GOOD ONE!!!!!

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Also I had

@kellym2

-I requested an appointment with Mayo Clinic and was declined. Apparently there are several collagen based syndromes -including Marfans but few people specialize and we still don't know who to go to for a Genetic test to determine specific type. My daughter is 22 and some types are very life limiting and some you should never get pregnant, we were told to see a Rheumatologist-but literature suggest you need someone who knows and specializes in collagen based syndromes-anyone able to help??

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Sorry it is a connective tissue disorder vs collagen based-still not sure if they are similar

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