@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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Welcome to the group @faithandlove, its nice to meet you and the other members here. I had been in the lung ( MAC) group the past six months discussing my lung nodules found when became very ill last year. I am happy to have a good report and healing in my lung and focus here with others in mctd group. There are so many mctd illnesses im sorry your having a hard time with disgnosis.
For me there has been s progression since i started having psoriasis at 18. I was diagnosided first at 26 with fibromyalgia, 30 psoriatic arthritis and degenerative disck disease. Im 46 now and was diagnosed last year with RA and lupus, after a bad bladder, uti, lung infection and systemic rash with hypersensitivity reactions. Shellfish i can no longer be around, the worste, lol. I do not have rheumatoid factor but with the venous swelling, joint sweelling, night sweats, lung involvement and Sponylosis, my doctor has been active in my care. Methotrexate has been the key to my health, if its withdrawn i get very ill and the rash starts back, never going away. Its most difficult during the diagnosis stages. It gets better when we find the appropriate medications for our bodies. I look forward to hearing from you and others in the community.
Julie

@sandytoes14

@regeana I echo @kariulrich advice on speaking with your doctor. You have many things going on at one time to which I can relate. Chronic widespread pain either keeps me awake or wakes me during the night. Our bodies need not only enough sleep (time) but quality sleep. I suggest you click on the following links that may give you some recommendations on sleeping better and a chance to chat with other members who are going through the same thing.
When doing some research on UCTD I found this interesting information http://bit.ly/2n5Mxq8 It certainly seems that Connective Tissue Diseases such as Systemic Lupus and Rheumatoid Arthritis overlap.
Sleep Hygiene : http://mayocl.in/2nV1XSL
Sleep and Pain: http://bit.ly/2npP6qf

Regeana, can you share with us what symptoms you have? Are you seeing a doctor of rheumatology?

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I appreciate the sleep information, ill read them this evening. Its nice to meet you, pls see the post below i wrote to @faithandlove. Hoping your having a nice afternoon.

Julie

@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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I am so sorry you are going thru that.

@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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Your nice for saying that. I am now a patient at MUSC in south Carolina, in good hands, like you will be at Mayo. I had my first hip injection a few weeks ago and its doing much better, next is another back injection. Have a good evening, Julie

@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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Hi Julie, @jewel8888,

Thank you for joining this discussion, and sharing your story. Since you mentioned MUSC, I just wanted to jump in and say that we lived in Charleston for a number of years, and still have our home there. I do miss South Carolina!
We appreciate your participation in the Connect groups, so keep talking (posting), and let us know anytime how the Connect community can help, as well.

@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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Yes, the frustrating part is that they haven’t done any genetic testing yet and they seem reluctant to do so, even though I am willing to pay.

@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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@faithandlove, Mayo Clinic does genomics testing and might be worth exploring. You could also request an appointment or call them to find out more.

http://www.mayoclinic.org/departments-centers/clinical-genomics/overview

If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

John

@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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Another place for genetic testing that may even be free:
https://genesforgood.sph.umich.edu/

I have connective tissue disease which really means your aota,vascular,feet,legs,hands,arms,shoulders joints hurt terribly, maybe a different area each day.
The pain has gotten much worst. I di not know I had this unmaeed tissue disease until I had major aorta burst-dessection,disscetion also od caroids and stomacjh aort, then hour afrter that surgery my aorta heart valve had to be replacede.
I have since been in pain. However you look absolutly great on the outside so unless you tell people you have horrible pain and when u do they say” oh that cant be true YOU look GREAT!”
I am in a study at UAB ib birmingham as they are trying to name it as several in my family have signs or have it.
I ask has anyone had the lower back of thier skull hurt so bad -especailly when they lay down that they have to put a bag oof ice under it to try to help pain?
Lora tab does not help at all.
Does anyone out here have a connective tissue diseaser or symptoms of it?
judee

@judeeo

I have connective tissue disease which really means your aota,vascular,feet,legs,hands,arms,shoulders joints hurt terribly, maybe a different area each day.
The pain has gotten much worst. I di not know I had this unmaeed tissue disease until I had major aorta burst-dessection,disscetion also od caroids and stomacjh aort, then hour afrter that surgery my aorta heart valve had to be replacede.
I have since been in pain. However you look absolutly great on the outside so unless you tell people you have horrible pain and when u do they say” oh that cant be true YOU look GREAT!”
I am in a study at UAB ib birmingham as they are trying to name it as several in my family have signs or have it.
I ask has anyone had the lower back of thier skull hurt so bad -especailly when they lay down that they have to put a bag oof ice under it to try to help pain?
Lora tab does not help at all.
Does anyone out here have a connective tissue diseaser or symptoms of it?
judee

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Hello @judeeo. I moved your discussion about connective tissue disease in to an existing discussion on mixed connective tissue disease. I did this so that you could read through the existing discussion on this disease and meet all of the members already talking about living with this disease.

If you are replying by email, I encourage you to click on the VIEW & REPLY button. Then, you will be brought to the full conversation and will be able to read through the other members posts about living with a connective tissue disease.

@judeeo, you mentioned that Lora tabs do not help? Is this a type of medication? Has your physician prescribed any other therapies or medications to help you deal with the connective tissue disorder?

Hi All, I am new to the US & I’m struggling to get to grips with the healthcare system & so I’m looking for any advice that you could share!
I developed an under active thyroid a few years ago, following pregnancy & was put on Levothyroxine. For several years, I have been experiencing a lot of symptoms – extreme fatigue, achy legs, weight gain, brain fog, numbness & tingling which were all dismissed in the U.K. as being connected to my thyroid issue. My TSH level forbthyroid is stable, so I couldn’t get any further answers from my doctor.
Since coming to the US a few months ago, I have had some further tests which have identified a connective tissue disorder. I am convinced this is connected to my thyroid, but the doctor has referred me to a rheumatologist, who is not covered by my healthplan with United. She has put me on steroids in the meantime, which made me feel great for the first few days, but now all my symptoms are coming back.
Do I seek out a new rheumatologist? Or should I find an endocrinologist for my thyroid? Who would be the best to look at both possibilities? I’ve had lots of blood tests done already, so should I talk to a doctor online?
I’m living in florida, I’ve heard great things about Mayo, but I don’t know where to start & I’d like to avoid seeing multiple doctors etc.
Any advice would be greatly appreciated.

Thanks

Jenny

@jennyw13

Hi All, I am new to the US & I’m struggling to get to grips with the healthcare system & so I’m looking for any advice that you could share!
I developed an under active thyroid a few years ago, following pregnancy & was put on Levothyroxine. For several years, I have been experiencing a lot of symptoms – extreme fatigue, achy legs, weight gain, brain fog, numbness & tingling which were all dismissed in the U.K. as being connected to my thyroid issue. My TSH level forbthyroid is stable, so I couldn’t get any further answers from my doctor.
Since coming to the US a few months ago, I have had some further tests which have identified a connective tissue disorder. I am convinced this is connected to my thyroid, but the doctor has referred me to a rheumatologist, who is not covered by my healthplan with United. She has put me on steroids in the meantime, which made me feel great for the first few days, but now all my symptoms are coming back.
Do I seek out a new rheumatologist? Or should I find an endocrinologist for my thyroid? Who would be the best to look at both possibilities? I’ve had lots of blood tests done already, so should I talk to a doctor online?
I’m living in florida, I’ve heard great things about Mayo, but I don’t know where to start & I’d like to avoid seeing multiple doctors etc.
Any advice would be greatly appreciated.

Thanks

Jenny

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Hello Jenny (@jennyw13) – welcome to Connect. This a great place to ask questions and get answers. I would definitely recommend contacting Mayo Clinic because they are good at diagnosing difficult and rare health issues. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

You can find out more about billing and insurance at Mayo Clinic here: http://mayocl.in/2kk2hF8

Here is information about Mayo Clinic’s Billing and Insurance:
http://www.mayoclinic.org/patient-visitor-guide/billing-insurance which includes information about Charitable Care and Financial Assistance at Mayo Clinic http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

Hoping you get an answer soon!

John

@jennyw13

Hi All, I am new to the US & I’m struggling to get to grips with the healthcare system & so I’m looking for any advice that you could share!
I developed an under active thyroid a few years ago, following pregnancy & was put on Levothyroxine. For several years, I have been experiencing a lot of symptoms – extreme fatigue, achy legs, weight gain, brain fog, numbness & tingling which were all dismissed in the U.K. as being connected to my thyroid issue. My TSH level forbthyroid is stable, so I couldn’t get any further answers from my doctor.
Since coming to the US a few months ago, I have had some further tests which have identified a connective tissue disorder. I am convinced this is connected to my thyroid, but the doctor has referred me to a rheumatologist, who is not covered by my healthplan with United. She has put me on steroids in the meantime, which made me feel great for the first few days, but now all my symptoms are coming back.
Do I seek out a new rheumatologist? Or should I find an endocrinologist for my thyroid? Who would be the best to look at both possibilities? I’ve had lots of blood tests done already, so should I talk to a doctor online?
I’m living in florida, I’ve heard great things about Mayo, but I don’t know where to start & I’d like to avoid seeing multiple doctors etc.
Any advice would be greatly appreciated.

Thanks

Jenny

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Hello Jennyw13, its nice to meet you. it is very difficult waiting for the right diagnosis and care we need. Im sure Mayo would be a step in the best direction for you. Steroids have many side effects, unfortunately sometimes we have to have them. I see a rheumatologist and he is also my primary dr. Maybe you can ask yours for a referral to the endocrinologist. Hoping you get help soon and welcome ro the US.

I have lived 16 years with never knowing how I will feel tomorrow. I learned to give up many of my activites that I loved as it only made flair ups worst.
wish there was a better answer Good luck
judee

@angiea

Hi just read your post. Been living with Sjogren Syndrome and Lupus for over a year. These particular dieases are considered auto immune. Therefore your body is attacking itself. So you are going to have to make some major changes to compensate for the fatigue the pain and any other symptoms you may have. Good news though the plaquenil will resolve your fatigue. the only thing is it will take 3~6 months to kick in! Watch it the prednisone will help pain but it will make you gain alot of weight!!!!! Exercise when you can! DO NOT over do it!!!!! Your body will let you know.Take Care!!!!
AngieA.

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I had autoimmune and they were giving me high does of prednisone and azathioprine/cellcept. Get off the prednisone as it never helped me and after 3 years I went off it myself, slowly…. and no change except my hair was no longer falling out and I was left with bone damage due to prolonged use of high doses. It never helped me from the beginning and no matter how many doctors I would tell nobody but the lung surgeon told me to try to reduce this to 5 if I can. I did better than that and now its zero….. Question is…. Is it really helping you? Is there something else? I’m assuming with Lupus you are taking some type of autoimmune suppressant? My experience only but prednisone is NOT good when prolonged at high doses and you need to determine if it really is helping you. Only you can decide that.