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I had an autoimmune disease, then the disease had me (2013)

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Re: I had an autoimmune disease, then the disease had me (2013)

#61

Post by cpncrunch »

pcrh wrote: post #56
cpncrunch wrote: post #36

Earlier quoted context omitted.

Yes, that's pretty much what I said. With the addition that if you look at the overall evidence it does seem to be pointing towards stress as the cause.

In the absence of an underlying vulnerability, it would seem pretty unlikely that stress alone would be sufficient to cause CFS. Many people have very stressful lives (including being refugees, being under regular fire, etc) without getting CFS.

The same can be said for PTSD. Whether or not chronic stress leads to hypocortisolism and burnout/CFS seems to be whether or not dealing with the stress is in the best interests of the organism (https://www.ncbi.nlm.nih.gov/pubmed/15950390), along with other factors such as time since onset, nature of the stress, personality factors, etc.

Stress-related disorders are quite common among the military and refugees (higher level of prevalence than the general population).

Re: I had an autoimmune disease, then the disease had me (2013)

#62

Post by throwaway83434 »

raydev wrote: post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

Mine started when I was 28, at the inside my left eyebrow, then my left eyelid. Then also my scrotum and then my scalp. STD tests negative. Dermatologist said "seborrheic dermatitis" and gave me a shampoo. Spreading to my elbows and knees it finally presented, and was diagnosed, like classic psoriasis.

Lulls and flares. Topical medicine was like a treadmill, barely containing what I had and not preventing any new areas. Then mild fatigue began with the flares. Hard to get up some days. Reminded me of the major depression I had conquered in a previous life. Blood tests were fine.

Then knee pain. "Just arthritis - you're 31 but getting older." Get some orthotics, do some PT. Tailbone pain. Fingers too stiff to get dressed. How much Naproxin can I take safely? Orthopedists just thinking of ways to treat pain - killing nerves or opioids. The cyclic nature makes it so that just as it's getting unbearable, or when I can finally see a new doctor, everything is pretty much fine.

A new dermatologist finally suggests I see a rheumatologist that it could be PA. Looked for the best in my region, did a lot of tests and at least I finally had a name for this. Psoriatic Arthritis. Took Otezla which helped my joint pain, gave me a lot of migraines, and seemed to be a multiplier for the topical medication, but after 9 months it was not keeping up with the flares.

Now I'm taking Humera injections instead for the last 3 months. My skin is almost clear and I haven't had any flare ups. The potential side effects are scary. Hoping to become more informed and find some alternatives to move to. For the first time in 8 years I feel almost normal, but my hunt is not over. Right now I've made a deal with the devil for some normalcy - I believe a lifetime of this medicine could kill me. It would also cost $33,000 a year without my great job and insurance.

The article's point that an umbrella autoimmune specialist is needed is so true. For me the closest I came was my rheumatologist - she knew more about psoriasis than any of the dermatologists I've been to.

Good luck on your journey.

Re: I had an autoimmune disease, then the disease had me (2013)

#63

Post by derefr »

rdtek wrote: post #58

In case it's helpful to anyone who suffers from CFS I want to share a treatment which enabled me to recover 100%. It's called the Lightning Process: http://lightningprocess.com The theory is that CFS is caused by long term anxiety which sets off biochemicals such as adrenaline into your heart and bloodstream. These chemicals suppress your immune system and reduce your energy systems. The treatment aims to switch off…

Do note that the constellation of symptoms associated with "chronic long-term anxiety" isn't exactly the same as the one for auto-immune disease; it's rather much closer to that of https://en.wikipedia.org/wiki/Cushing%27s_syndrome. CFS and Cushings are indeed probably related, though.

Re: I had an autoimmune disease, then the disease had me (2013)

#64

Post by yladiz »

zzyx1yz wrote: post #57

I have an autoimmune disease; type 1.5 diabetes, formally called LADA (Latent Autoimmune Diabetes in Adults). I'm insulin dependent, like type 1, but the disease didn't manifest until my 40s, like type 2. I suffer from moderately severe diabetic foot pain. My doctor prescribed some medication that provided marginal, at best, relief. About a year ago, I had a persistent fever. I took some aspirin to knock down the fev…

Not sure the causes of the foot pain, but if you haven't use many NSAIDs before, check out ibuprofen. It's safer than the other drugs in its class and performs better at most functions including inflammation. The major benefit of acetaminophen over ibuprofen is that ibuprofen can cause upset stomachs more easily whereas acetaminophen is less likely to do so.

I'd be careful and consult your doctor about the pain though, since any NSAID can cause complications for your body if you have specific issues if the NSAID is used over a long period of time.

Here's one article about NSAID use and one article about the FDA warning about long term usage of NSAID:

1: http://www.vox.com/2015/8/17/9165189/best-painkiller-tylenol...

2: https://www.nytimes.com/2015/07/14/science/experts-urge-spar...

Re: I had an autoimmune disease, then the disease had me (2013)

#65

Post by manmal »

uberduber wrote: post #51
salimmadjd wrote: post #22

Earlier quoted context omitted.

I'm a big believer in the gut-immune system connection. I've observed that with my own boy. However, there is no real good science there, yet. This is an area that could use some grants. While every philanthropist wants to cure cancer, it seems like there is a lot of good science out there in the need of investment.

I'm currently seeing a functional medicine MD recommended by my rheumatologist. Functional medicine doctors are really into the gut-immune side and my rheumatologist says he's seen some amazing results. I've been on an elimination diet for about 2 months without results, but in almost every paleo/aip/whole30/pfd cookbook I've been reading, the author's bio says something about recovering from autoimmune disease throu…

One thing that helped me (though I'm not yet finished recovering from a period of high stress) was to do the things that strengthen the gut barrier. As long as the barrier is permeable for large particles, you will have foreign objects floating around and your immune system attacking them. Here is a very long article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604320/#!po=2....

Specifically, strains like Bifidus Longum are beneficial, and of course reducing stress (negative outlook etc) is. The article particularly stresses efficacy of 5-HTP, but I've not tried that yet. IMO very overlooked one: weak stomach acid. My symptoms get WAY better if I consistently use vinegar and supplement zinc.

Re: I had an autoimmune disease, then the disease had me (2013)

#66

Post by [deleted] »

rdtek wrote: post #58

In case it's helpful to anyone who suffers from CFS I want to share a treatment which enabled me to recover 100%. It's called the Lightning Process: http://lightningprocess.com The theory is that CFS is caused by long term anxiety which sets off biochemicals such as adrenaline into your heart and bloodstream. These chemicals suppress your immune system and reduce your energy systems. The treatment aims to switch off…

[deleted]

Re: I had an autoimmune disease, then the disease had me (2013)

#67

Post by hive_mind »

wellboy wrote: post #46

I am going through the same right now. 2 years ago I was running my startup Tennis Buddy, and everything was fine when I got pins and needles pain one morning all over my body and blurred vision. I have had this a lot of times before in my life (around 20 times), and it always went away with rest within 1 week with no problems. However, this time I was in the middle of finishing a contract and didn't take rest. A cou…

won't hurt to try:

1) wim hof breathing technique

2) contrast showers

3) yoga (especially the 'mayur asana' pose)

4) any 21 day meditation audio series where each meditation is about 10 minutes long (you'll find some on YouTube)

Re: I had an autoimmune disease, then the disease had me (2013)

#68

Post by throwaway9991 »

zzyx1yz wrote: post #57

I have an autoimmune disease; type 1.5 diabetes, formally called LADA (Latent Autoimmune Diabetes in Adults). I'm insulin dependent, like type 1, but the disease didn't manifest until my 40s, like type 2. I suffer from moderately severe diabetic foot pain. My doctor prescribed some medication that provided marginal, at best, relief. About a year ago, I had a persistent fever. I took some aspirin to knock down the fev…

How long did it take to get foot complications in your case and how good was your diabetic control? I'm also "late onset" type 1, (diagnosed at 27). But they don't call it LADA. The weird thing is that they could not find any antibodies, but since my C-peptide level was very low at the moment of diagnosis they call it Type 1.

Re: I had an autoimmune disease, then the disease had me (2013)

#69

Post by spraak »

zzyx1yz wrote: post #57

I have an autoimmune disease; type 1.5 diabetes, formally called LADA (Latent Autoimmune Diabetes in Adults). I'm insulin dependent, like type 1, but the disease didn't manifest until my 40s, like type 2. I suffer from moderately severe diabetic foot pain. My doctor prescribed some medication that provided marginal, at best, relief. About a year ago, I had a persistent fever. I took some aspirin to knock down the fev…

Have you tried medical cannabis for the pain? My wife has an autoimmune disorder and uses the raw cannabis - which has THCA, a precursor to THC, which doesn't get you high but greatly helps her pain and inflammation caused by her over active immune system

Re: I had an autoimmune disease, then the disease had me (2013)

#70

Post by throwaway9991 »

ww520 wrote: post #38
raydev wrote: post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

Some good news. There are dozens of new drug approved by FDA addressing the auto immune illness. The problem is they are expensive, thousands of dollars per shot for every couple weeks. Hopefully the competition will drive the cost down.

Dozens of new drugs, like what?
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