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Autoimmune Disorder and long time suffering

I am a 35 year old female who is struggling with my health.

In my teenage years I dealt with quite a bit of joint pain in my knees and hands but nothing ever got me down. I was ambitious and active but I did deal with lots of stress.

Fast forward to my mid 20’s. I had an 60lb weight gain, dealt with depression and anxiety but still continued to work and stay as normal as I could. When I was 28 I sought help for my depression and anxiety. Things started looking up. I got active and started running. I lost almost 70 lbs and never felt so good mentally and physically despite some chronic knee pain (I thought was due to running).

By 30 my knee pain was extreme, I was falling when my left knee would catch and finally had an arthroscopy to find out what was wrong. After non weight bearing for a month, my left leg had completely atrophied and I was weak and discouraged. I rushed back to work because mentally I needed to stay active. I limped around on that leg that aches an was constantly swollen for over a year.

By 2016 I started noticing this tiredness that wouldn’t go away. I would wake up tired and by mid afternoon I was completely wiped. My hands started to cramp up and seize while I was working. I am employed at my local hospital as a sterile processor, a dietary aid and a house keeper. I really started struggling with cleaning small instruments and scopes due to my hands cramping. I was diagnosed with trigger finger in my left index and had some cortisone shots.

By 2017 I woke up one morning with this feeling that something was stuck in my throat. I have not had one day since that I had any relief from this. I started getting waves of vertigo, this too comes and goes almost every day since.

In the spring of 2018, I injured my back transferring a patient in the OR. Instant pain that I have had no relief of since. I was booked off work and WCB covered me. X-Ray showed Spina Bifida Occult in my L5. MRI revealed only a disc bulge with an annular tear in my L3-4 with some mild narrowing of the spine. My L4-5 has a diffuse disc bulge, also with a tear that flattens the anterior of the thecal sac. Also some narrowing secondary to extension of the disc. I was told this isn’t a big deal and was put into treatment for a return to work.

During treatment I started getting major joint pain and swelling in my knees. My hips were flared up, my elbows ached and burnt constantly my neck was seized, my wrists were achy and painful and my second toe on my left foot was constantly swollen and sore. I had numbness and tingling in my left leg, a constant throbbing in my left buttock and my back pain usually sat at a 5. My muscles were extremely sore and tight all over my body, feels like an elastic band stretched so tight it’s about to break. I started feeling week and nauseous when I’d be out in the heat.

My heart raced steady, day and night. And I was hospitalized for a major flare up of, what I found out was, diverticulitis. I had a CT and colonoscopy that showed moderate diverticulosis a 4.5cm pericardial heart cyst and extreme pain with the scope that was consistent with IBS. I continue to struggle daily with my stomach. Fluctuating between chronic constipation and the diarrhea. I had had 2 positive Fit tests (blood in my stool). Sometimes large clots.

In 2019 I started having major eye issues. Lots of floaters, my eyes are sore and tired, my eyes twitch back and forth very quickly when I’m focusing and I see stars. The stars started with big explosive events. Now I see static like starts constantly every day, with periodic busts. I see big blotches of color like  greens and yellows.

I have on and off chest pain, gets worse with activity. I get big sudden busts of pain in my abdomen and back that takes my breath away but only lasts less than 20 seconds. I trip over my words, I’m clumsy. My left foot is often swollen and it turns dark purple. I usually notice this when I am cold. When I start to warm up, my toes turn white. My hands continue to cramp and flare up. My back pain is constant as is a deep achy burning numbness in my left leg. I have constant headaches, sometimes so bad that I’m nauseous and sensitive to light. My skin is sensitive. A simple scratch or bump causes so much pain it takes my breath away. My BP is on and off high, averaging 130/90. My ears ring steady. I have constant waves of tingles that run down my back through my buttocks and down both legs every single day. Muscle tension and weakness has remained. Holding my hands over my head for longer than 10 seconds is almost unbearable as is walking up stairs or getting out of bed or getting up from a seated position. My muscles twitch and spasm often. I periodically get burning tingles in my jaw or chin. I am itchy. So itchy in fact that it sometimes drives me completely mental. I get night sweats. And when I get big flare up of my joints and stomach I get a raised red rash on my cheeks and across my nose.

I am still on disability. Every single day I push myself to go on the treadmill (sometimes I can only go for 10-15 minutes at a time) usually I try and do 1 hour total. I do strengthening exercises for my core, legs and arms. I also do light stretching for at least an hour. My goal is always 1500 steps a day. With activity everything flares. And stretching never helps but I am so worried my body is going to completely seize up. My motto is “a body in motion, stays in motion”. I want so badly to keep active but I am struggling so badly with all these symptoms that I have such a hard time staying positive. After my exercise daily, I always have to lay down with my legs up. My muscles seize completely. I never sleep. I’m always in pain.

I have been diagnosed with chronic tachycardia, high BP, Chronic pain Syndrome, Fibromyalgia, IBS, and moderate diverticulosis.

I’m waiting for bloodwork for Lymes, celiacs, CBC, CRP, ESR. I did a fecal calprotein and am waiting for a scope to make sure I don’t have Crohns or colitis. I take a lot of Advil and Tylenol. I was just put on Lyrica to try and start to regulate pain. I have been prescribed hydromorph 5mg for pain but cannot take it because it causes such awful constipation.

I am exhausted and frustrated. I want so badly to have a normal life and to stay positive but my ability to be active has almost complete vanished.

Can anyone help?
14 Responses
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1081992 tn?1389903637
COMMUNITY LEADER
Hi, Megan. You've suffered through so very much. Yet you keep going. You are most likely the most courageous person I've ever seen here. It must have been exhausting to even write out your long and very detailed post.

Maybe we can figure some ways to halt the progression or even reduce the severity. Most everything seems inflammation related, of course. You've got it everywhere. I bet your ESR and CRP will be very high.

"In my teenage years I dealt with quite a bit of joint pain in my knees and hands..."
That could be 'reactive arthritis'. Do you recall if you had a very bad cold, or stomach bug, or other infection before everything started?

"Fluctuating between chronic constipation and diarrhea also constant bloating and abdominal pain."
Problems with gut microbes can drive bodywide inflammation. Bad microbes can produce harmful biochemicals. They can also lead to 'leaky gut', which is increased intestinal permeability... which means that molecules which shouldn't get into the bloodstream do get into the blood, leading to immune reactions.

"My left foot is often swollen and it turns dark purple. I usually notice this when I am cold."
As in Raynaud's.

"I am itchy. So itchy in fact that it sometimes drives me completely mental."
Likely that's from histamine made by mast cells (powerful immune cells that can create many many bad effects when they go haywire). Aberrant mast cells might also possibly create connective tissue disorders, which can result in joint problems.

"I take a lot of Advil and Tylenol"
Ibuprofen can create leaky gut, yet you maybe need it for now. Hopefully, the Lyrica will mean you can cut back on the ibuprofen.

"I get a raised red rash on my cheeks and across my nose."
Lupus? If so, that can cause so many many many symptoms. It's called the disease with a thousand faces.

That's for starters. Are you familiar with these concepts?
Helpful - 0
1 Comments
That you SO very much for the response and for your kind words. I feel like, so much of the time, I see doctor after doctor and I cannot get any light into what is going on. My frustration is at an all time high for sure. If I have to hear of see another doctor who says "You are so young and you're in good shape, you're healthy", I am going to freak right out. There has to be a cause for all of this.

I do not remember a lot of my childhood, but I do know that my Mom has often talked about me being sick quite often. Extremely high fevers. Lots of strep throat. She also talked about, what she called, growing pains. She said I used to cry out in pain quite regularly throughout the nights and even in the days I would have to lay with my legs up because the pain was so bad. I still get this deep bone pain in my legs. I also had Mono in early high school which my mom said, put me on my ass for weeks. I do vaguely remember the lymph nodes in the back of my head were so big and sore I could not lay down.

As of right now, I have had no relief from the Lyrica. The doc wanted to start me on 25mg to see how I react. He did state there is lots of room to move up with this med just to ensure I can tolerate it. Ive been really watching my advil intake but it is difficult because I have a harder time controlling my pain when its is to high to begin with.

My Gastro doc did talk about Lupus at my last appointment. Since then I have read as much as I can find (which is LOTS) on this disease and it scarily matches SO many of my symptoms. I am typically not one to "google symptoms" or to stress prematurely as I do not like to add worry, but I am grateful I am referred to a rheumatologist.

I have never had any doc look further into my throat issues, so I am not certain what that is all about. I do though deal with heart burn.

When attending treatment, my PT really focused on my left Pyriformis. I continue to do stretches for this every day to try and keep myself from seizing but I still have constant pain. I guess I can't be certain where the pain is actually stemming from because I do have a great deal of muscle pain but also deep  hip/groin pain that never really goes away.

Thank you again for your response.
1081992 tn?1389903637
COMMUNITY LEADER
"By 2017 I woke up one morning with this feeling that something was stuck in my throat. I have not had one day since that I had any relief from this."
Possibly Eosinophilic Esophagitis.

"I trip over my words"
Brain fog?

"constant throbbing in my left buttock"
Pyriformis syndrome? Or is it located at the greater trochanter?

"mentally I needed to stay active"
Absorbing all of this might suffice  :)
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
All of that childhood info is very relevant, Megan.

What do you say to trying the following? Let's try to lessen the Piriformis Syndrome greatly and so we can have an early victory.

One time, I was ramping up exercise and I developed PS. I thought I would just tough my way through it. That made it get much worse, to where upon standing I would get enough pain to make my whole body break out in a sweat. Sound familiar about the standing?

Eventually I learned that exercise was out. So was stretching, which just inflamed the nerve more. What worked was the tennis ball, then days later a Lacrosse ball - though done very intelligently rather than according to some rigid instructions. I would do the ball for literally hours per day while reading. The best coach on this is Goldilocks :)  I would also stand up very  very slowly. I would eat standing, and so on.

Getting severe pain while using the ball means you are just inflaming things worse. I have seen advice which says to actually sit on the ball, which seems insane to me. You can try icing.

You can exercise your whole body, but not the left leg at all.

Willing to try?


Note that you will in most things have more inflammation, even with PS, because you are you. Any advice you see amongst normals probably doesn't apply to you. Always keep that in mind.
Helpful - 0
1 Comments
OMG yes, this sounds so familiar. Some days are way worse than others but I am willing to try absolutely anything to help ease any one of my symptoms. I have often used different types of balls. Sometimes I literally have so much pain that I have used a soft stress ball and that is enough to make me nauseous. I have three different balls I do use though and I am going to do this. More than I do already. I know you said I can still exercise my whole body, I am assuming my treadmill is still ok? Some of my core exercises really flare that side up as well, I think maybe there is a few things I should back off of for awhile. I also use my foam rolls, should I stay away from rolling out that left side? I usually just do my IT bands, quads and butt.

I am definitely a bit of an overdo-er, always have been. Im going to try my best.

Thank you again, I am so grateful for all your thoughts and advise. Ill keep you posted :)
1081992 tn?1389903637
COMMUNITY LEADER
"...my left Pyriformis... I guess I can't be certain where the pain is actually stemming from"
Put a phonebook on the bed, then the ball, then you. There will be no mistaking the center of the pain, if it is indeed PS. You don't have to necessarily use the ball on the center of the pain if it hurts too much at first, though that is the eventual goal. Goldilocks knows that the aim is not to show how tough you are, but instead how smart you are :)


Stretching is bad while the syndrome is ongoing, though it can and probably should be used afterwards in order to help prevent recurrence.
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
"I am assuming my treadmill is still ok?"
I don't think so.

"Some of my core exercises really flare that side up as well, I think maybe there is a few things I should back off of for awhile."
Yep, back off. And please never make yourself nauseous by pushing things.

"I also use my foam rolls, should I stay away from rolling out that left side?"
I would guess that wouldn't help the PS anyway.

"I usually just do my IT bands..."
Are you generally inflexible? If so, there might be a connective tissue disorder, which goes along with a certain autoinflammatory condition. Just as being hyperflexible does.

"Ill keep you posted :)"
I sure hope you do  :)


Only you can know what causes bad pain at the PS location. Rocky is a bad coach, Goldy is good :)  "No pain, no gain" is wrong.


"I am definitely a bit of an overdo-er, always have been."
Good, let's channel that into absorbing knowledge until your head almost explodes  :)   Almost.
Helpful - 0
1 Comments
Okay, I will take it easy for awhile.

I used to be flexible, when I was younger. I was a runner in my teenage years and loved yoga. Since my late 20’s I am not flexible at all. Everything just feels soo tight.
1081992 tn?1389903637
COMMUNITY LEADER
"I also had Mono in early high school which my mom said, put me on my ass for weeks. I do vaguely remember the lymph nodes in the back of my head were so big and sore I could not lay down."

I believe that signals that you have an overactive immune system.

Do you react very badly to bee stings? Do you get flushing/blushing episodes?
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1 Comments
Surprisingly I have never been stung by anything that I know of. I’ve often wondered how I would react.

I suppose I do get episodes of flushing, yes. Sometimes out of no where I do get a low grade fever as well.
1081992 tn?1389903637
COMMUNITY LEADER
"I suppose I do get episodes of flushing, yes. Sometimes out of no where I do get a low grade fever as well."
Megan, are you familiar with MCAS, the mast cell disorder? I'm thinking you might be, since you say you had wondered about bee stings.
Helpful - 0
1 Comments
No, I have never heard of that.  
1081992 tn?1389903637
COMMUNITY LEADER
"I used to be flexible, when I was younger."
Then I suppose we can write off another immune mystery condition, called Ehlers Danlos Syndrome.

"Since my late 20’s I am not flexible at all. Everything just feels soo tight."
So that is muscular and not from the joints?
Helpful - 0
1 Comments
I have joint and muscle issues for sure.
1081992 tn?1389903637
COMMUNITY LEADER
"My skin is sensitive. A simple scratch or bump causes so much pain it takes my breath away."
Let' try a simple one: can you write on your sternum with your fingernail?  (dermographia)
Helpful - 0
1 Comments
Yes, I can. Without any negative affects.
1081992 tn?1389903637
COMMUNITY LEADER
Dermographia aka dermatographism would most likely be from Mast Cells in your skin releasing too much histamine, too easily. MCs manufacture and release more than 200 biochemicals (called mediators), and they can create lots of varied problems when being overactive. We can try using "mast cell stabilizers" to stop MCs from going off too easily. MC stabilizers can be drugs, or plant extracts like quercetin.

MCs also have have over 100 different types of receptors in their surface, which are something like sensors. So we can try using blockers (like H1 and H2 antihistamines), which occupy the receptors but don't set them off - like jamming a fake key into a lock so that a real key can't come along and operate the lock.

MC disorders are autoinflammatory, not autoimmune, btw.  

Helpful - 0
1 Comments
When my itching started quite awhile back I did take antihistamines to see if that would ease the itch. Unfortunately I had no relief. I do not break out in hives or anything, it feels more like a deep burning itch I can't find when I try to scratch it. I cannot find any link with the itch to the food I am eating. I keep a wellness journal along with documentation of everything I consume food, drink and supplements day to day looking for links. I have a small group of friends of Docs and nurses who I worked with, I have inquired about a few of my individual symptoms every now and again when I am baffled, the itching was one of them and antihistamines were the recommendation.
1081992 tn?1389903637
COMMUNITY LEADER
Here is a photo:
https://www.mayoclinic.org/diseases-conditions/dermatographia/symptoms-causes/syc-20371411
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1 Comments
From what I can tell that is not at all what happens when I "draw on my skin". I am covered in tattoos, but I do not feel or see any raised areas.
1081992 tn?1389903637
COMMUNITY LEADER
What about topical antihistamines for skin itch?
Then also trying topical cortisone.
Helpful - 0
1 Comments
I have tried something called DermaCalm. It isn't a prescription cortisone just something I found at the store.
1081992 tn?1389903637
COMMUNITY LEADER
"I do not feel or see any raised areas"
It doesn't have to be raised, just redness.

Did you also try H2 blockers, which are the antacids like Pepcid?
Helpful - 0
1 Comments
I tried Benadryl but often pop Rolaids for heartburn anyway. Maybe I will give it another shot with both, see if I get any relief.
1081992 tn?1389903637
COMMUNITY LEADER
"I keep a wellness journal along with documentation of everything I consume food, drink and supplements day to day looking for links."
Remember that it can also be a component of food, like histamine or salicylates. There are several lists around of hi/lo histamine contents in food.
Helpful - 0
1 Comments
I will look into this. I try to stick to eating clean... along with some guidelines of the low fodmap but never thought of low histamine contents.
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