Inflammation, A Hopefully Constructive Discussion

mamapeach910 wrote: »

amwcnw wrote: »

Nope it's HLB-27, I have AS and pos for gene but with all of extras stuff. They say you can be a carrier but it stays dormant. Wished mine I would have:) Good luck! Yes- sorry for the derailment too mama peach .

No derailment. Being a carrier of disease without it manifesting is a topic I'm interested in; specifically what might trigger it to manifest. I also think it's germane to this discussion.

We know from his IBS work-up that my son carries a gene for Crohn's, and I wonder which one of us he got it from.

if you are interested in triggers - here is some of the research on the current models:
http://www.ncbi.nlm.nih.gov/pubmed/16377230

Timely discussion MP, my joints hurt like hell atm.

tomatoey wrote: »

.

The high ESR has confused doctors, though. (I don't suppose anyone has any insights about that?)

If there is a family history of AI issues, it is possible that you may have some underlying symptoms or blood markers that are yet to fully develop.

About 11 years ago, blood tests were high for ESR and over the years the reading has been high enough that my doctor indicated if he did't know better he'd think I had pneumonia.

Up to about two years ago, there were generally no other issues or symptoms except for a corresponding high CRP readings. Then I started developing symptoms for Sjogren's Syndrome (AI)...blood tests were negative for the antibodies, however, minor salivary gland biopsy verified the syndrome

My doctor has now linked the prior high ESR readings to underlying/not yet apparent symptoms of the syndrome.

Autoimmune issues run high in my family history..lupus, diabetes 1, and now the sjogren's syndrome.

It also became apparent that I had gone through early menopause (no indication at all), I also have low vit d levels which I supplement high for and osteopenia (low bone mineral density, can be reversible but also a pre-cursor to osteoporsis) for which I supplement with calcium, vit k and magnesium.

Iron levels are monitored due to immediate family history of haemochromatosis.

Another person with AI problems here. RA and Sjogren's, plus I also have a slew of other disorders, all of which are genetic. My sister and I refer to the family tree as the "genetic cesspool." I do take Humira and methotrexate, along with an NSAID, for the RA. Plus meds for other conditions, fish oil, and calcium with vit. D. My CRP has been controlled and in the normal range for years, but I still have symptoms. Mostly fatigue, but when I feel like I might flare, my whole body starts feeling tense and out of sorts. No pain, but almost like I want to crawl out if my skin, plus a low grade, sort of burning feeling inside. Getting extra rest usually does the trick. I have some lower back pain, probably from sitting at the computer at work, and Pilates does the trick for that.

I feel the best when getting enough sleep, doing Pilates on a regular basis, and eating the Mediterranean style diet. I love the recipes, but it is mostly following the principles. Cutting back on red meat and having one or two meatless days a week really help me feel better. My rheumy recommends it, and I miss not keeping up with it do to surgery recovery. I still am not able to stand and cook much of anything yet.

Fatigue is a real issue, as I'm have at least 3 disorders which trigger it. I will spare you for now, but it ius a problem.

Inflammation means my thyroid throbs, my face swells, all over swells up. Like the skin is too tightly stretched.

Then the joint pain starts in, mainly in my neck, my ankles, my wrists and thumbs. I have another nifty thing that happens when inflammation hits, my collarbones get pushed out because of swelling. they will do it independently or together.

Not long after the headaches start. The sort of headaches that feel like a little elf is in there with a chisel and hammer trying to escape combined with the feeling of someone squeezing my head in a vise.

I have Hashimoto's and this is where it gets odd, I also have Grave's antibodies too. So it's a not so thrilling ride of hormones surging and dropping off the face of the cliff. I have to say, as bad as hypothyroid symptoms are they beat the snot out of the hyperthyroid symptoms. Nothing like a resting heart rate in the 130s to make you freak.

I have discovered some of the triggers to the inflammation are food related. As for the rest, I guess my greater than 1000 TPOab antibodies get bored and stage a shock and awe campaign against my thyroid, then other times the TSI antibodies get tired of missing the fun and join in to see who gets to be victorious for a while in the battle for killing the thyroid off.

Anyway, best of luck to all with inflammation. It sucks.

tiptoethruthetulips wrote: »

tomatoey wrote: »

.

The high ESR has confused doctors, though. (I don't suppose anyone has any insights about that?)

If there is a family history of AI issues, it is possible that you may have some underlying symptoms or blood markers that are yet to fully develop.

About 11 years ago, blood tests were high for ESR and over the years the reading has been high enough that my doctor indicated if he did't know better he'd think I had pneumonia.

Up to about two years ago, there were generally no other issues or symptoms except for a corresponding high CRP readings. Then I started developing symptoms for Sjogren's Syndrome (AI)...blood tests were negative for the antibodies, however, minor salivary gland biopsy verified the syndrome

My doctor has now linked the prior high ESR readings to underlying/not yet apparent symptoms of the syndrome.

Autoimmune issues run high in my family history..lupus, diabetes 1, and now the sjogren's syndrome.

It also became apparent that I had gone through early menopause (no indication at all), I also have low vit d levels which I supplement high for and osteopenia (low bone mineral density, can be reversible but also a pre-cursor to osteoporsis) for which I supplement with calcium, vit k and magnesium.

Iron levels are monitored due to immediate family history of haemochromatosis.

Oh, man. The body remains a mystery, for all the things we know. Thank you for sharing your story, and I'm also sorry that you've been unlucky

Thank you, OP, for taking my comment from yesterday's thread and running with it - and for everyone who is sharing their individual experiences with inflammation.

For the record, my experiences with inflammation began when I was about 7 with a series of fevers "of unknown origin" which means that blood tests (and there were a LOT of them) turned up nothing that would explain the fevers except elevated inflammation markers (ESR and CRP).

Shortly after that, I started developing excruciating pain in my leg muscles every night - again with only speculative comments from the drs as to possible causes of this "inflammatory process."

At 8, I began suffering from what would be diagnosed as migraine syndrome (a more systemic form of migraine response that can affect vision, digestion, but often without headache) nearly 10 years later. More recent studies correlate migraine symptoms to inflammatory response in blood vessels brought on by any number of triggers from tannins in teas and wine, gluten, sugar, dairy and any number of less common dietary and environmental stressors.

I hit puberty at 9, and developed my first "cellulite" at 10 (this cellulite would later be diagnosed as lipedema - a problem with lipid metabolism and fat storage with associated interstitial edema due to poor lymph distribution that causes pain, inflammation, bruising, and can lead to depression).

Fevers were back for about a year at 16, IBS showed up at age 19, indicators for hemolytic anemia at 20. (Strangely enough - the anemia seems to come and go - my rheumatologist relates it to mental and physical stress which creates (you guessed it) inflammation.

At age 45, after going through a divorce and subsequently losing my second husband to Hodgkin's, I spent the better part of a year undergoing every test my drs could think of to find out why I was fatigued, in pain, unable to lose weight, and fighting depression. I saw allergists only to be told that while I showed a "response" to everything they tested (in excess of 180 scratch tests), both the scratch tests and blood tests indicated I wasn't allergic to anything. (Even the naproxen that put me in the hospital years earlier with internal and external hives, as well as the antibiotics that I had allergic symptoms with as a child) My CRP levels were going up, as were my homocysteine levels. I went through a colonoscopy to rule out Crohns, an endoscopy to biopsy for gluten intolerance, invasive cardiac testing to rule out some rare cardiac infection as a cause of my malaise, neurological testing to rule out MS and to find a cause of my restless leg syndrome, and a bounty of other tests I honestly can't recall anymore. The best diagnosis they could give me was fibromyalgia - which is basically a diagnosis of exclusion... I didn't have RA, or Lupus, allergies, or any of the other "test-able" conditions - I just had pain, inflammation, and fatigue.

It wasn't until I attended a diabetes seminar with my new husband (he's diabetic) on the blood sugar/inflammation/thyroid disorder connection that I had found a dr who seemed to offer some hope. After having gone through the "standard" thyroid testing all of my adult life, this dr did more in-depth testing and my hashimoto's was diagnosed. For anyone who doesn't know, Hashimoto's thyroiditis is an autoimmune disorder - one of many - caused when the body's immune response causes it to attack itself and cause inflammation. Hashi's accounted for many of my symptom's - my hypertension, my fatigue, a tendency toward depression, dry skin, swollen legs, and some of my pain. Medication has helped, but because I want to feel the best I can, I've started looking for my own personal inflammation triggers and ways to bolster my immune system. In taking a long hard look at my diet, there are many things I've found I don't tolerate well, but refined sugar, by far, has the most immediate negative response on my body... which is where I got into trouble on the post yesterday. It's not the only cause, but it is the most noticeable. One candy bar will result in water retention of up to 8 lbs in a 24 hour period (that's nearly a gallon) and any woman who deals with PMS bloat will attest to how miserable they feel with a more modest 2-3 lb water weight gain. I once sat in a dr's office after eating a candy bar to prove my point, and we watched my ankles and legs swell by more than 2 inches in diameter, my heart rate jump into the 120's and my blood pressure reach a pretty uncomfortable 168/110, not to mention the pain I dealt with for the following 2 days while I went back into non-sugar mode. For the record, I am not diabetic or pre-diabetic either - I just have a crummy immune system that is not liking my body and is creating tons of inflammation because of it.

What does my inflammation feel like? My eyes burn and water, my skin is dry and itchy where it isn't tender, my joints ache, my legs and arms swell, my digestive system is not happy, I often run low grade fevers for no reason, and I fight fatigue daily. It sucks, and if giving up something like sugar makes it better for me, you betcha I'm going to do it. It's not the only food that affects me, but it has the most pronounced effect and it's the least nutritional, so it's the first to go.

Sorry for the book, but I've spent so much time looking for answers that medicine and science can't give me that, for anyone else in a similar position - I want you to know you are not alone, you are not crazy, and you are definitely justified in making whatever changes work for you.

I am still reading through the thread but wanted to share an article I read today Regarding inflammation and heart disease.

http://m.disclose.tv/news/World_Renowned_Heart_Surgeon_Speaks_Out_On_What_Really_Causes_Heart_Disease/113103

I have Crohn's Disease so systemic inflammation is very real for me. My immune system automatically thinks it's poorly 100% of the time so attacks itself, effectively fighting an illness that is never there, causing inflammation and soreness in the stomach and small intestine. I'm on weekly medication for this.

I think a lot of food these days has some very awful ingredients in (more particularly processed foods) and our digestive system is extremely sensitive. I reckon a lot of people experience some sort of low level inflammation at some point in their life whether it be through a chronic diagnosed condition like mine or just a bit of irritable bowels.