Recently diagnosed with autoimmune disease - looking for support

Posted by mils @mils, Aug 9 5:52pm

Hello everyone! I am very new to the forum and the diagnosis.
Not really looking for answers but for similar experiences and some support as people who do not experience these type of diseases do not seem to understand the level of disruption it can bring to one's life.

Just to briefly tell my story:
Jan 2022, after a brief but bad cold (not covid), I started experiencing body aches. They were mainly chest pain (collar bone area) and lower ribs, sometimes in the lower back. Been to many doctors, been to the ER several times and experienced high levels on anxiety. I was mainly dismissed with "it's stress, relax and meditate", and suggested that it could be depression. My pcp decided to do blood work for autoimmune diseases and ANA came back positive so sent me to rheumatologist. Here, they did more blood work but everything came back normal (except for ANA). So they put me under the "umbrella" of Undifferentiated connective tissue disease. I was on low dose prednisone for a month which did miracles with my pains. Then after that I started plaquenil everyday (no more prednisone) and been taking it since April with no more pains (maybe once in a while, but manageable). However last week I started waking up with terrible left shoulder blade pain, as someone was stabbing me in the back. Experiencing hip pain on same side, then the ribs pain started again yesterday. Doctor gave me prednisone "as needed" which for me was everyday for the past 3 days. However, this time, it seems as it is not working as it did the first time. Same dose as before, also still on plaquenil. I am going through extreme anxiety since I do not understand how the pains can come back out of the blue, and how the medicine that have worked so far, they are not working anymore.
I was wondering if someone who has been dealing with autoimmune diseases has some insight into managing these flare ups. I did not expect them to come back, but then again, I am new to this and looking for some support.

Thank you to everyone who would like to share their experience.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Mils –
If in fact all of your symptoms are truly from an an unidentified autoimmune disease, learning to manage your symptoms is likely your best pathway forward.

But to develop this pathway, its important that you focus your efforts on trying to ‘connect the dots’.

I have had to deal with a cascade of viral triggered Celiac Disease symptoms for the last 40 years.

First, understand that if you do have an autoimmune disease, most ADs are not curable. It is a hard new reality to deal with – but it is important to try to control your emotions so that you can better understand how your symptoms are either connected and/or unknowingly added to based on your activities. And, once you get this understanding – you can develop as number of management techniques/tools you can use and you have a better chance to deal with your symptoms.

How to connect the dots: Over the years I have developed as many as 10 ‘autoimmune’ symptomologies that are structurally connected. And understanding the sequence of what each new persistent symptom was and how it connected to the previous new symptom was vital in creating my management pathway.

Although at its onset I did not appreciate how severe the damage that a viral infection can do. In retrospect, that viral infection clearly triggered a family history of CD on my mothers side – she was of Irish ancestry. And CD is a major problem of white Northern European populations – particularly the Scandinavian and neighboring countries. So your ancestry can play a role in your current medical issues.

Where to start: As the medical system learns more about the damaging effects of a viral infections – Vasculitis or inflammation of the body’s vascular vessels can be a significant issue. FYI – Covid is not a flu causing virus as much as it is a Vasculitis causing virus. And, which body parts or organs are damaged by a lack of adequate blood supply can take a while to develop. And, almost certainly will be identified as a major cause of what is now called ‘long covid’.

So, create a list of any unusual symptoms that you had during and immediately after your viral infection and the sequence each new symptom developed. And don’t limit that list to major new physical symptoms alone – as seemingly minor post infection symptoms – like fuzzy brain episodes, afternoon fatigue, new food reactions, rashes, loss of smell or taste, etc can be the footprints of what damage that viral infection may have caused.

Comment: You face a long slog to fully understand how the dots are connected and what tools you have to manage you new realities – BUT working with your MD’s, helping to get them educated, and reaching out for advice on this site are major steps in the right direction.
Chris47 –
PS – you might try the following as possible new tools: get and stay gluten free, switch to only organic food, if vegan start eating any food high in vitamin B12, take B and C vitamins supplements, use dermal patches with Cortisone ointment on localized pain areas, use ThermoCare heat pads to reduce joint and muscle pain.
At the MD level, get periodic CRP for a measure of inflammation and Cortisone blood tests for Adrenal functionality.

And above all, understand that it is imperative that you act as your primary advocate – as modern medical reality is that the old GP as your quarterback guiding your healthcare is no longer the norm!

REPLY
@chris47

Mils –
If in fact all of your symptoms are truly from an an unidentified autoimmune disease, learning to manage your symptoms is likely your best pathway forward.

But to develop this pathway, its important that you focus your efforts on trying to ‘connect the dots’.

I have had to deal with a cascade of viral triggered Celiac Disease symptoms for the last 40 years.

First, understand that if you do have an autoimmune disease, most ADs are not curable. It is a hard new reality to deal with – but it is important to try to control your emotions so that you can better understand how your symptoms are either connected and/or unknowingly added to based on your activities. And, once you get this understanding – you can develop as number of management techniques/tools you can use and you have a better chance to deal with your symptoms.

How to connect the dots: Over the years I have developed as many as 10 ‘autoimmune’ symptomologies that are structurally connected. And understanding the sequence of what each new persistent symptom was and how it connected to the previous new symptom was vital in creating my management pathway.

Although at its onset I did not appreciate how severe the damage that a viral infection can do. In retrospect, that viral infection clearly triggered a family history of CD on my mothers side – she was of Irish ancestry. And CD is a major problem of white Northern European populations – particularly the Scandinavian and neighboring countries. So your ancestry can play a role in your current medical issues.

Where to start: As the medical system learns more about the damaging effects of a viral infections – Vasculitis or inflammation of the body’s vascular vessels can be a significant issue. FYI – Covid is not a flu causing virus as much as it is a Vasculitis causing virus. And, which body parts or organs are damaged by a lack of adequate blood supply can take a while to develop. And, almost certainly will be identified as a major cause of what is now called ‘long covid’.

So, create a list of any unusual symptoms that you had during and immediately after your viral infection and the sequence each new symptom developed. And don’t limit that list to major new physical symptoms alone – as seemingly minor post infection symptoms – like fuzzy brain episodes, afternoon fatigue, new food reactions, rashes, loss of smell or taste, etc can be the footprints of what damage that viral infection may have caused.

Comment: You face a long slog to fully understand how the dots are connected and what tools you have to manage you new realities – BUT working with your MD’s, helping to get them educated, and reaching out for advice on this site are major steps in the right direction.
Chris47 –
PS – you might try the following as possible new tools: get and stay gluten free, switch to only organic food, if vegan start eating any food high in vitamin B12, take B and C vitamins supplements, use dermal patches with Cortisone ointment on localized pain areas, use ThermoCare heat pads to reduce joint and muscle pain.
At the MD level, get periodic CRP for a measure of inflammation and Cortisone blood tests for Adrenal functionality.

And above all, understand that it is imperative that you act as your primary advocate – as modern medical reality is that the old GP as your quarterback guiding your healthcare is no longer the norm!

Jump to this post

Thank you Chris, I really appreciate your answer. This was the kind of support I was looking for. I have been diagnosed in March, although the diagnosis is still uncertain, they believe it is an autoimmune disease since I responded well to steroids and then plaquenil. Aside from the beginning, this is my first flare, and the pain is new and much worse than before so I became even more anxious thinking all possible explanations. The doctors don't really have an answer as to why the symptoms are coming back, why new and why worse, but it is great for me to find support from others who have gone through this before I did.
Thank you for all your advice, I am starting to try and connect the dots on my own since, as you said, I will end up having to advocate for myself

REPLY
@mils

Thank you Chris, I really appreciate your answer. This was the kind of support I was looking for. I have been diagnosed in March, although the diagnosis is still uncertain, they believe it is an autoimmune disease since I responded well to steroids and then plaquenil. Aside from the beginning, this is my first flare, and the pain is new and much worse than before so I became even more anxious thinking all possible explanations. The doctors don't really have an answer as to why the symptoms are coming back, why new and why worse, but it is great for me to find support from others who have gone through this before I did.
Thank you for all your advice, I am starting to try and connect the dots on my own since, as you said, I will end up having to advocate for myself

Jump to this post

Mils –
You are welcome!

Once you have created your symptom sequence list of both of major and minor new symptoms, go to any number of Celiac Disease websites that list CD symptoms.

Compare your list to the websites’ lists and count how many on your list match the published lists. Note: keep in mind that different lists can use different descriptive words for the same condition and some sites have more complete lists than others – so write a list of as many of the different symptoms list items published to get a better comparison.

In my case, the first time I compared lists I had matches of about 50%. But the matches increased to about 80% for the more complete lists as I found more sites. Basically, Celiac foundations, Centers, and government sites usually have the most complete lists!

Finally, even if you only find matches for 20-40%, what is important is which matches you have! So a general symptom like fatigue can have multiple causes, while alternating diarrhea/constipation can be a strong CD indicator.

Above all keep in mind that there are two types of CD patients – Active CDers are about about 3% of the population while Silent CDers can be as much as 12-13%. Actives are usually more easily IDed -, while Silenters often take longer.

And, as much as having a high percent of matches is a good CD indicator, having a match of the sequence of the onset of symptoms is a strong indicator that you have CD and that the damage it has likely done to your body’s ability to function correctly has increased from the initial stages and may well continue to increase.

In my case during the 10 years from CD onset until I began to identify CD as a possibility, significant functional damage was done to various elements in that functionality. Enough so that I have IDed as many as 10 CD related symptomologies!

Good luck on your pursuit of understanding the what, why, and when of your medical challenges! And, keep in mind that once your exploration has highlighted a potential pathway, you will still need to be able to explain how you connected the dots to a number of MDs – until you can find a Doctor that not only wants to help deal with your symptoms but also their causes!
Chris47 –

REPLY
@chris47

Mils –
You are welcome!

Once you have created your symptom sequence list of both of major and minor new symptoms, go to any number of Celiac Disease websites that list CD symptoms.

Compare your list to the websites’ lists and count how many on your list match the published lists. Note: keep in mind that different lists can use different descriptive words for the same condition and some sites have more complete lists than others – so write a list of as many of the different symptoms list items published to get a better comparison.

In my case, the first time I compared lists I had matches of about 50%. But the matches increased to about 80% for the more complete lists as I found more sites. Basically, Celiac foundations, Centers, and government sites usually have the most complete lists!

Finally, even if you only find matches for 20-40%, what is important is which matches you have! So a general symptom like fatigue can have multiple causes, while alternating diarrhea/constipation can be a strong CD indicator.

Above all keep in mind that there are two types of CD patients – Active CDers are about about 3% of the population while Silent CDers can be as much as 12-13%. Actives are usually more easily IDed -, while Silenters often take longer.

And, as much as having a high percent of matches is a good CD indicator, having a match of the sequence of the onset of symptoms is a strong indicator that you have CD and that the damage it has likely done to your body’s ability to function correctly has increased from the initial stages and may well continue to increase.

In my case during the 10 years from CD onset until I began to identify CD as a possibility, significant functional damage was done to various elements in that functionality. Enough so that I have IDed as many as 10 CD related symptomologies!

Good luck on your pursuit of understanding the what, why, and when of your medical challenges! And, keep in mind that once your exploration has highlighted a potential pathway, you will still need to be able to explain how you connected the dots to a number of MDs – until you can find a Doctor that not only wants to help deal with your symptoms but also their causes!
Chris47 –

Jump to this post

I was actually tested for CD multiple times (once via biopsy and twice via blood work) and came back negative. Rheumatologist believe my autoimmune disease might be more joint/connective tissue/muscle related. Even so, hearing from anyone going through any type of chronic and uncurable disease, makes my experience a bit more validating and makes me feel a bit less anxious. So thank you so much for your insight!

REPLY

You have been given a lot of good information by Chris47. I subtle symptoms off and on for years. Then after an emergency appendectomy, everything went south. By the time I saw my first rheumatologist I was a hot case of MCTD. I’ve done my research and worked with my “private”team. (Older daughter is a clinical pharmacist and the younger is an Occupational Therapist.) They are both into nutrition and have helped me with my diet also. I’ve learned to stay out of the sun and heat, dress warm in winter, TRY to de-stress and get plenty of rest. Good luck on your quest. 💜🦋

REPLY
@1950

You have been given a lot of good information by Chris47. I subtle symptoms off and on for years. Then after an emergency appendectomy, everything went south. By the time I saw my first rheumatologist I was a hot case of MCTD. I’ve done my research and worked with my “private”team. (Older daughter is a clinical pharmacist and the younger is an Occupational Therapist.) They are both into nutrition and have helped me with my diet also. I’ve learned to stay out of the sun and heat, dress warm in winter, TRY to de-stress and get plenty of rest. Good luck on your quest. 💜🦋

Jump to this post

Please explain what MCTD is? Thanks

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Hi, I’m very sympathetic to your situation. I’ve had RA and ILD and AFIB for about 8 years. I take Cellcept, and Plaquinil for the RA.
I found a supplement called MSM with Condrotin that helps with pain, MSM , is an Organic form of Sulfa. I also use the Topical cream available on Amazon.
These are two helpful products. I also use Tylenol daily.
The MSM also seems to give me a little energy.
I’ve suggested these two to product’s to friends an most say they are helpful.
I also
Make myself move, walking or using a recumbent bicycle, no sugar, bread, tomatoes, potatoes, peppers.
Do research, stay on this forum it’s encouraging and helpful. Don’t give up or isolate, get outside and look for a group in your community that you can join for support.
I wish you well, jilly

REPLY

Welcome @mils. What a great question to ask, regardless of the actually autoimmune condition one has. I LOVE the response you got from @chris47 here: https://connect.mayoclinic.org/comment/735862/

Chris, your post should be required reading for anyone diagnosed with a new or unconfirmed autoimmune disease.

Answers were further augmented by experience and tips from @1950 and @jilliemo12345. @helent, you were right to call out the acronym MCTD. It stands for Mixed Connective Tissue Disorder. We have a few discussion about MCTD and UCTD here:
– MCTD (Mixed Connective Tissue Disease) https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/
– UCTD: Undifferentiated Connective Tissue Disease: https://connect.mayoclinic.org/discussion/uctd/
– How do you cope with Mixed Connective Tissue Disease? https://connect.mayoclinic.org/discussion/mctd-265a2b/

I think @becsbuddy @tsc @marye2 @krcc may wish to add to this discussion.

@mils what are the next steps for you for confirming a diagnosis? Treatment? How are you?

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@mils

I was actually tested for CD multiple times (once via biopsy and twice via blood work) and came back negative. Rheumatologist believe my autoimmune disease might be more joint/connective tissue/muscle related. Even so, hearing from anyone going through any type of chronic and uncurable disease, makes my experience a bit more validating and makes me feel a bit less anxious. So thank you so much for your insight!

Jump to this post

The information you gave mils is so amazing! Thank you for responding!!

REPLY

Diagnosed with MCTD last year. I guess I don't understand what a flare is because I am always in pain…yes, every day. I take HCQ daily and that saved my kidneys from certain death. I did have 3 rounds of high-dose/taper Prednisone, which worked great initially for relieving pain, but caused 40 lbs of weight gain and a painful buffalo hump (which has decreased after four months of no steroids). Can't try Methotrexate due to kidneys. Cellcept makes me nauseous and dizzy so I am going to try Myfortic. AIP and vegan diet hasn't helped nor has vitamin supplements (Bs, D3, magnesium). My heart, kidneys, digestive system, musculoskeletal system, and now liver are all taking a beating. But my lungs are good…the one set of organs that is supposed to be affected the most. I use a walker or wheelchair every day, so does this mean I am constantly in a flare? I wish I could offer advice but I could use some too.

REPLY

Hello @mils Sounds like you’re on a long, difficult road, but you’re doing all the right things. You’re asking questions and looking for support. I know you’ll find it here.
I have an unusual autoimmune disease, inflammation of the brain. It was relatively new so no one knew anything about it. After prednisone, CellCept (an immunosuppressant) , rehabilitation and lots of physical therapy, i got onto the right track. But flares do come and go. I’ve learned to use the prednisone in order to manage these flares. But, I can tell you, they are so depressing when they come. I’ve been seeing my therapist again and she is able to help with the feelings. I’ve slowly learned to just live every day and do what I can.
I forgot to mention that you might try to see doctors at a major medical center or university hospital. That’s what I had to do and it has been great. The doctor knows exactly what I have and how to help.
I”m so glad you found Mayo Clinic Connect. Everyone is so willing to help each other!
What have you got coming up this week?

REPLY
@krcc

Diagnosed with MCTD last year. I guess I don't understand what a flare is because I am always in pain…yes, every day. I take HCQ daily and that saved my kidneys from certain death. I did have 3 rounds of high-dose/taper Prednisone, which worked great initially for relieving pain, but caused 40 lbs of weight gain and a painful buffalo hump (which has decreased after four months of no steroids). Can't try Methotrexate due to kidneys. Cellcept makes me nauseous and dizzy so I am going to try Myfortic. AIP and vegan diet hasn't helped nor has vitamin supplements (Bs, D3, magnesium). My heart, kidneys, digestive system, musculoskeletal system, and now liver are all taking a beating. But my lungs are good…the one set of organs that is supposed to be affected the most. I use a walker or wheelchair every day, so does this mean I am constantly in a flare? I wish I could offer advice but I could use some too.

Jump to this post

Hello @krcc I’m so sorry that you’re still having a difficult time. Are you seeing specialists for your care? In her comment above, @colleenyoung mentioned some discussions on MCTD that you may wish to follow
https://connect.mayoclinic.org/comment/737087/
Are you seeing a rheumatologist who specializes in autoimmune diseases?

REPLY
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