Too many diseases!

Yeah, I’d wonder why too! It sounds like another rare disease. I hope the upcoming specialist sheds some light. If you’re up to it, I’m curious what she says. Sounds like a really unpleasant disease.

Does eating lots of salt and strictly limiting fluid intake leave you thirsty all the time? My primary physician told me to do that too. Salt tabs and way less water drinking. It made me miserably thirsty and didn’t really solve any symptoms. That was before an endo decided to give me cortisone and fludrocortisone to see if it helped. It totally did! A great relief.

Oh right, osteopenia. I think I’ve avoided that by using a trans-dermal progesterone cream over the past couple decades. No one has checked me lately though.

Thank you for sharing your story here. Just hearing that others are living with complex health issues too helps me for some reason.

Funny that I see this today. It’s been a bad few weeks, and it does help me a bit not to feel so alone. Yeah, I have a sh–ton of AI issues. I’ve had crohn’s for over 20 years, AI arthritis, and AI liver disease for more than 10. The type 1/LADA didn’t show up till 2018. I still think that lifetime of heavy steroid(I was on 40+ mg for over 3 years) use due to crohn’s is a causing factor in my diabetes. Alas, the diabetes was found during a pre-surgical blood test, and that surgery was for an AI issue with my skin. Some days I handle life really well and things are going great.

Today, not so much. I’ve also been having dental issues, and it’s too much (yeah, also have osteopenia due to steroids). I’m not dealing so well. I’m so tired of my body doing all the wrong things. I’m tired of the pain…the fear…I’m at the end of my rope physically and emotionally.

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Another ASer out there. Hello. So you have RA and AS?
@earthling I know that, in my case, I handle the pain with mmj. Been a wonder drug for me.

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@Earthling, Humira never worked for me, it seems after Remicade failed, the Humira was built along the same lines(though minus the mouse thing…can’t remember the specific terminology). Cimzia works well for me. Funny thing it does seem to help my AS (Like @Rphil2) I have the HLA-B27 phenotype. Mine is mostly in my hip at the sacral joint. there is some fusing there.

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Oh gosh. So many things to deal with. I hear you Jenn20. I got so tired of painful dental work In spite of flossing and brushing compulsively, I got all but the front bottom six pulled, got dentures. They’re not a picnic either, but I don’t regret that decision. At least they look nice :roll_eyes:

Has to be a punch in the face to get T1 after all that other stuff. Ugh. Best wishes and high respect for your strength to keep trying on your own behalf. Hard to stay hopeful, I know

And thanks for sharing your experience with meds. I’m going to dive into sorting my own in a couple weeks with my rheumatologist.

Jenn, I do have RA and AS. Ugh !! Medical Marijuana is not legal where i live. But we do have hope in Indiana. I am predicting that Indiana will be the 157th state in the union to approve Medical Marijuana. What you say we so not have 157 states? No problem, when we do have 157 states Indiana will be the 157th.

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The surgery is spinal laminectomy and it has been a good thing for me. Not perfect but good. I could barely move with such terrible pain in my hip. The pain is mostly gone. The doctor said it would take at least one year to clear as much as it will. Going on 4 years now it is mostly gone. But he also said it may never completely clear, and I suspect it never will completely go away. Still I would do it again in heartbeat.

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Is mmj marijuana? I’m a blue girl in a red state, so, well dang. Next door state is cool, though. Any brand/type you recommend? Short of growing poppies I’m at a loss as to how to deal with constant exhausting pain.

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Good to know. Feeling inspired to search more options.

Earthling, I am almost never thirsty thank goodness. Once in awhile I would like a cup of tea or a glass of wine, but I just put it out of my mind.

Yes, I think it helps to know that others have burdens, so that one doesn’t feel too sorry for oneself.

Most folks do have their own troubles.

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Yep. Lots of autoimmune disease.

Type 1 for 54 years
Rheumatoid arthritis almost 20 years
Sjogrens syndrome
SIADH
Asthma
Hypothyroidism

Didn’t mention the non autoimmune diseases.
Totally exhausting!!

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Me…

I’m glad I happened to come over here bc it’s so rare but saw this post in the process! I’m out so can’t respond now but wanted to express a huge yes me and glad to find you now lol although sucks too! Hope I can remember to come back. Going to send myself a note

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Here are some web sites that may be useful.

For RA this is a good site

For AS this is a good site

and for PsA

Finally if none of those fit I suggest any of these sites.

Disclaimer - I write for the AS and RA sites and as such I nominally employed (I write articles and get a small payment for my writing).

What I can tell you about the two sites I write for is that most of the writers are female., most of the readers are female, and most of the men, like myself, think that is OK. :slight_smile:

Laf, I see that you have SIADH. I was dx with SIADH this past fall. Did you ever find out why you have it, and do you take a pharmaceutical so that you can drink more fluid? I don’t know anyone else who has this, so I hope you don’t mind these questions.
Thanks, Marilyn

Hi Isadora. Beautiful name! Thanks for answering this post. I hope you come back to post. Best wishes!

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I was just diagnosed with it this year. I think it was because of the Nexium and Prilosec I was taking. Both, and too much, which I shouldn’t have. I stopped both, still have terrible heartburn, but my last labs were improving. My legs still are swollen 90% of the time. I’m 106#’ and my legs look ridiculous. Oh well, I’m alive. What did your doctor tell you to do! Mine just said I have it and that was that, besides a ton of blood work.

Like @cardamom, I credit most of my success to support from family and friends. I was able to live with my parents for most of my university career and also when I was working part-time after university. And even now that I no longer live with them, my parents are so supportive. When I was in hospital being diagnosed with Graves’, I came home to find my mom was cleaning my entire apartment (which was quite messy, because I hadn’t been feeling well!). I wouldn’t be where I am without that kind of support. <3

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I am 106# too, but my legs aren’t swollen. I went to a nephrologist and she put me on fluid restriction. Even though I didn’t look like I was retaining fluid, I immediately lost about 3 lbs of fluid. I usually drink about 45 oz of fluid a day including soup. Definitely no more than 50oz. Since my sodium levels can be quite low, I use a lot of salt and take salt pills.

We knew that I normally tested at least a bit low for sodium, but one day i suddenly didn’t know what an insulin pen was and I could not form words. My glucose was 120. Soon I started seeing bright lights. I managed to tell my husband to call for an ambulance. I figured that my sodium level dropped too low and once I was out of the hospital my GP did the tests and then the nephrologist did more.

I am seeing another more experienced nephrologist at the end of the month. I really want to know why I have this. It can show up for several reasons including cancer, so I have had several scans and ultra sounds. I am not aware that it can be caused by any of the meds I am taking at this time.

I hope that you lose the extra fluid soon.

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Wow. I think your condition sounds more severe than mine. They changed my medications. Took the diuretic out of my blood pressure drugs. Had to stay on other drugs they said could contribute. My last sodium was ok. :woman_shrugging:
Hope you receive more answers soon.

I’m a nurse, but on disability for 13 years, and never really knew anything about SIADH. Feel better soon. If you don’t mind, let me know any info you get.
Lori

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These are great, Rick! I will check them out. Thank you.

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