Chronic Inflammation

[Michelle F.]

I want to understand inflammation. Maybe some of you can help me. I went to a doctor about 7 years ago because I was tired of hurting. He was a sports medicine doctor and I was having some joint problems, but pain everywhere. He was thorough and I had a lot of testing. He ruled out all of the big things. He treated me with Celebrex for systemic? or chronic inflammation. I eventually took myself off of it..when my doctor was activated to go to Iraq.

In hindsight, the only time I have been pain free in my adult life (I am 43) was when I was on Celebrex. Is inflammation normal with age? Does everyone have it? Why do I have it? How can I get rid of it? I have fibromyalgia...could it be related? Is there a more natural way of dealing with it than medication.

I know so many people on here are going through so much more than I am. But as I sit here typing this, in tears, I am sooooo tired of hurting. Yes, I have my limbs, vision, most of my hearing, my beautiful family and my faith. But what more can I do to stop hurting?!

Thank you everyone. This truly is one of those "But you don't look sick" things....because I just keep going....because I have to.

Michelle F.

[janiedelite]

Hi Michelle,

It looks like from your signature that you have hypermobility syndrome. I'm sure one of the EDSers would be more knowledgeable about the pain that results from this condition. Celebrex does decrease inflammation in your joints. It was the only med that helped my hip pain somewhat while I was waiting for my second hip surgery following a car accident. It also helped my back pain somewhat. Like any other NSAID, it can be hard on your kidneys so you should get them checked every few months with a BUN and creatnine.

I just posted about dealing with chronic back pain while being immobile from POTS. I understand how you feel. You know one drug that really helped me was Lyrica. My pain is mostly musculoskeletal too (from a couple bad car accidents but also from POTS I believe) and I felt nearly pain-free while on it. It is expensive, though. Neurontin is similar to lyrica, but has been around longer and is cheaper. It's not quite as effective but still helped me. These meds are actually classified as anti-seizure meds, but are also used for neuropathy pain. Many chronic pain doctors try them out on patients with chronic pain, though. I really wish I could have stayed on one of these meds but they slowed my GI tract too much. They affect your nervous system too and can make you foggy.

I'm sorry you're hurting so much. Look on my recent post on back pain and POTS as there are some good suggestions for pain relief there too:

http://dinet.ipbhost.com/index.php?showtopic=12647&hl=

[Michelle F.]

Thank you, Thankful. (I like your name. ) EDS does keep coming up and I do highly suspect it. I went to a rheumatologist, but he said I have a benign condition...think he based it on my normal looking skin. I believe I do need to see someone for a clearer dx about the hypermobility issues I have. Of my five children, I can tell at least four of them "loose ligaments". I will look at your link. Thank you.

[ramakentesh]

I have chronic inflammation from Ank Spond which I came down with at the same time POTS turned up. Chronic inflammation and pain is not normal.

Some inflammatory markers are being investigated in POTS which may be of interest. Elevated TNF alpha has been associated with Chronic Fatigue and Fibro. It is a vasoactive inflammatory marker and my interest in it comes from the fact that it is implicated in Ank Spond.

You might want to also looking into another vasoactive inflammatory peptide, Substance P. This is the peptide that is involved in pain transfer. It is also a vasodilator by increasing endothelial nitric oxide. Again substance P is being investigated in POTS and there is LOTS of research involving it and Fibro.

[Michelle F.]

Thank you. A lot of what you said is over my head, but I will do a search for some of the things. I do not have POTS, but your information may help me connect some dots. I knew pain was not normal, but I just wasn't sure about inflammation. Thank you!

Michelle F.

[mkoven]

An experienced geneticist is probably the best to diagnose eds. I believe the top people are saying that "benign hypermobility syndrome" and eds are often the same thing, and there is nothing "benign" about it. Perhaps the word benign is used to distinguish it from vascular eds, which does have much greater risk of mortality? I recently saw Clair Francomano in Baltimore who was very thorough and has seen a lot of connective tissue disorders. She was able to tell me that there is something rather atypical in my tissue, as I tear before I stretch. She also noted all sorts of things that noone else had noticed earlier. I actually have a "marfanoid" set of body proportions-- (proportionally long arms and torso) which fits with a connective tissue disorder, which no one else had noticed, as I'm overall short and stout--but my wing span is four inches longer than my height and ribs sit almost right on top of my hips, because they are essentially "too big" for my lower body. All this just helps fit the pieces together. There aren't a lot of docs with enough experience to diagnose eds, esp the non-textbook presentations.

[Michelle F.]

Thank you, mkoven. You have been helpful to me in the past about this. The rheumatologist didn't offer a dx with my hypermobility issues. He seemed more concerned about addressing my fibromyalgia issues. He was a good listener though, so I asked him if he had any reason to suspect I had Ehler Danlos, or something of the like. He acknowledged that I had some hypermobility, but that it was benign....all the while investigating my "normal" looking skin. One other thought I have had is that I have an abdominal hernia, post surgery...hmmm....sounds consistent with connective tissue problems, doesn't it?.

Thanks again.

Michelle