Inflammation, A Hopefully Constructive Discussion

PeachyCarol

DDD is degenerative disc disease. I think sometimes just dealing with the noise of several chronic pain conditions is fatiguing enough on its own!

I have synesthesia, and I don't always experience pain in the way that everyone else does until it's very, very severe. It's sort of background noise for me, but I experience distracting and overwhelming... how can I describe this... shapes and colors that are, for lack of a better turn of phrase, profoundly unsettling and uncomfortable.

I was once hospitalized for my chronic migraines, and during that time, the entire rotation (in turn) of the full practice of the headache specialists I see came in to see me and they brought in their students... just to talk to me about my experiences, because they were fascinated to come across a synesthete in their practice.

tomatoey

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 .


Edited because apparently I have been writing it all wrong this past year. HLA-B27.

I'm sorry to hear this happened to you

tomatoey

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

Sarasmaintaining

mamapeach910 wrote: »

DDD is degenerative disc disease. I think sometimes just dealing with the noise of several chronic pain conditions is fatiguing enough on its own!

I have synesthesia, and I don't always experience pain in the way that everyone else does until it's very, very severe. It's sort of background noise for me, but I experience distracting and overwhelming... how can I describe this... shapes and colors that are, for lack of a better turn of phrase, profoundly unsettling and uncomfortable.

I was once hospitalized for my chronic migraines, and during that time, the entire rotation (in turn) of the full practice of the headache specialists I see came in to see me and they brought in their students... just to talk to me about my experiences, because they were fascinated to come across a synesthete in their practice.

I had to google this and wow, that's a crazy thing to have to deal with!

APeacefulWarrior

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.

EfJ2013

My lymphedema is a result of an strep infection I had in my leg 4 years ago. It took a few years to manifest itself but at this point my lymph system is 'broken'. I see a PT/Lymphedema specialist for deep tissue massage (breaking up the cells and pushing the fluid towards my lymph drain) as well as wrapping. Insurance company has denied the at home pump. PT/Lymphedema specialist estimates 40-50 pounds of fluid in my lower body on a bad day. Very frustrating and depressing. Last year at this time I was doing zumba twice a week and maintaining an 85 pound weight loss. Now I have no idea what I weigh - not weighing myself and getting any more depressed when I have so much fluid in my body - and even walking is painful when the legs are swollen, which is every single day. Knees shot from almost 30 years of RA as well. Most days my upper body are the same measurements as post my weight loss but below my waist - holy moly! Even worse is the loss of zumba - those endorphins kept me pumped. Trying to get a new handle on things as they are now - not very successful, though!

Very interested in reading that low carb / low sugar might help with the lymphedema so will be trying that. Thank you!

rgoins374

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

kellellie

Late to the party, but my AI symptoms show themselves in two main groups. One, which I call the standards, are the things i've dealt with my entire life. Mostly, pain. Tendon pain, joint pain (my joints are not well put together, and tend to dislocate, especially when I was a kid). The pain can be induced by action (oh, I dared to walk around the grocery store, all my muscles are going to hurt for 3 days, yay!) or chronic. The chronic pain is mostly nerve pain, ulnar and sciatic nerve on my right side especially. I had a sit down job for 2 years right out of high school, which caused unbearable ulnar pain from my back to my hand. Not numbness, but shooting, death pain to where I couldn't wear a bra or stand to have anyone touch me. This is all exacerbated by stress, and I happened to move across country back home when I quit that job, and it took 8 months to finally get any relief out of it, though to this day about 9 years after the fact, it's still the first thing to get pissed off if I sit at a computer more than an hour. The most constant is, like some others here, exhaustion, but this one is almost exclusively linked to the stress in my life. I have a very low stress job, and I try to keep my life low stress, but of course with less practice, small things can seem bigger, and I have to actively work on tools for stress management to keep from creating my own sickness, if you see what I mean. The best tool for this is activity for me. I have a physical job now and I've never been in the kind of pain doing what I do now that I was in when I sat all day for a living.

The second group are the newer, weirder thing that have started happening as I get older. The first was pancreatitis attacks, that began when I was 14. It took years for doctors to figure out what it was (and a few who said I was just making it up, or just on my period). During years with a lot of stress, i'd sometimes have 3 attacks a month. Its brutal, and definitely my most feared side effect of having an auto immune disease. Thankfully I haven't had one in over 2 years, and haven't had a REAL one (the ER kind) in 3 or 4. My grandmother is dying of pancreatic cancer, so ANYTHING I can do to keep my pancreas happy, I do.
Other symptoms of inflammation are fevers, the longest of which was 3 months of 99.7-101.5 at all times. I didn't necessarily feel any MORE run down than usual until the 2nd month. In the middle of this particular fever, I was out to eat with my in-laws and my ear suddenly started leaking fluid, but no pain. Turns out it ruptured, and it leaked for 3 days. Other odd ones are in times of stress, my periods hurt more and I also cramp during ovulation, which is the sharpest, stabbiest, death pain ever for about an hour to 3 hours.

Any sort of inflammation that occurs TO my body as a result of disease or injury can send my immune system into overdrive. For example, I tore up my ankle in a fall like 15 years ago, then continued to walk around on it. It was constantly swollen, and that's also when I had a lot more pain and organ problems than I do now. After I finally had surgery to fix the damn thing (and had a lot of dental work done that I needed around the same time) This past year has been much more manageable as far as pain goes. During my worst year, all my blood test readings were bizarre. Blood count to vitamin D to liver enzymes. I've had every test known to man done on my liver, pancreas, and galbladder, and they are all perfectly healthy in general... but during a flare, my pancreas will develop an inflammatory lesion and my liver enzymes go all wonky and it stops processing vitamin D.

Point being, inflammation can be any number of symptoms. I currently eat a diet that excludes a lot of known and suspected trigger foods, and I actually feel pretty awesome. I keep going wow, is this what normal people feel like? No wonder they can get things done!

Fayeworth

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.