Holy Smokes! My As And Pots Could Be Linked

[ramakentesh]

Just to follow on from a recent discussion ive just encountered something quite surprising when i did a search for ankylosing Spondylitis and 'Autonomic'

Some patients do experience autonomic disturbances such as elevated heart rates and abnormal vascular control. I might have to go see a rheumatologist.

http://www.pubmedcentral.nih.gov/articlere...i?artid=1752931

[nantynannie]

Hello,

I also have AS with POTS/Dysautonomia. Thanks for the info.

Ann

[ramakentesh]

You serious? That is pretty amazing as Ive only ever been able to find two other people who have POTS and have family members with AS.

Have you ever received treatment for AS and how has it affected your POTS symptoms?

Ive only ever taken basic anti-inflammatories for AS. Ive always wondered what those newer AS medications called TNF blockers might have on my POTS problems??

Did your rheumatologist connect the two at all? My POTs doc thought my AS onset was 'interesting' and may provide 'clues to causes of POTS in patients'.

My old rheumologist was a weird guy so he didnt really give me much to go on so i stopped going to see him. He said they were probably connected but i got the feeling that he thought that you could get all sorts of crap with AS so i shoulkd count myself lucky my eyes werent inflammed or my heart about to pop...

[ramakentesh]

Last question - do you have a more hyperadrenergic presentation or the blood pooling in lower limbs variety?

[mcaimless]

Just curious, have you ever been worked up for Fibromyalgia? Fibro accompanies many autoimmune diseases and very often presents first with dysautonomia. There's a lot of stuff out there about the connection of fibro and ANS dysfunction. My dys symptoms came on over a year before I presented with the classic fibro symptoms. I also have RA.

[ramakentesh]

No ive never been tested for that but i dont think i have that pressure-point pain thing. For me the pain is purely on the sacroiliac joints and also occasionally under my neck.

[nantynannie]

I was initially diagnosed with Fibro and RA, it took them a long time to find the AS...I am female, and some doctors won't even look at AS for females. None of the rheumys I went to would even acknowledge the POTS. They said I was deconditioned even though I ran a marathon the same year I was dx'd.

Personally, I think Fibro is diagnosed when they can't figure out what you really have. I think many Fibros have dysautonomia and/or a connective tissue disease that does not fit into the doc box.

I had cortizone shots, which were very helpful, tried ALL of the rheumy meds, nothing worked. Refused the TNF blockers. Tumor Necrosis Factor is what helps kill cancer cells, so when they block TNF, you have a higher chance of leukemia and other blood borne cancers. If you listen to the commercials, you will hear the disclaimer. I know some people don't have much of a choice, but in my case it just wasn't bad enough for me to do it.

The AS gets bad, and then seems like it's gone for a while. Not sure if that is what happens to you? I got POTS and AS at the same time and the POTS doesn't go away. I have high catacholamines (800+) sitting, but I also have some blood pooling and some kind of small capillary leakage. My legs get very hot and red and I get flushing/intense heat with the shaking and sweating.

What is your story? Until I read your article, I've never had a doc even entertain the possibility they were related.

Ann

[morgan617]

Ramakentesh,

My son Jake developed seronegative spondyloarthropathy at age 11. He's 27 now. His SI joints are already fused and he has fusion in his sacral and lumbar regions, with a lot of squaring of the vertebrae. He has crohn's that goes along with it and endocrine problems. he's been on steroids, NSAIDS, and is now on Humira with no real improvement. he is at the age you typically start having symptoms and it's already been almost 17 years. he has no memory of ever not having pain.

He is very prone to tachycardia, lightheadedness, and has very low BP. I am very sure he has POTS, as do I, although he got the HLA-B27 gene from his dad. That was a very interesting read! Will bring it up with his rheumy next visit. He's had one for a very long time! Humira is supposed to be good for slowing progression, but he's having no luck. If you have AS, you probably should be seeing a rheumy. Good luck! morgan

[morgan617]

Aussie guy...LOL, I just read the other post. Does this say anything about the fog I'm surrounded by...LOL. Sorry about that.

The gene is HLA-B27. It doesn't guarantee people are going to get the arthritis, but about 100% of people that get this type of arthritis have the gene. You want info, sweetie, I've got it all, my kid's been sick forever and I've been fighting the system for him forever.

I wasn't excited about the TNF's either, but 70% of juvenile onsets end up with joint replacements by age 30. He's got one hip that's pretty bad. I refuse to let him go the remicade route, it's way too intense, but there really is virtually no specific treatment for AS besides TNF's.

It sounds like you may have gotten the infectious type with such a quick onset. There are 5 different types, but just about any of the symptoms can overlap. Jake has had iritis just once, but it wasn't any fun and I do worry about his aortic valve, which is sometimes affected.

What I really wanted to mention is that although other symptoms occur besides the arthritis, they don't always correlate, or happen at the same time. Sometimes jake's gut will flare but his arthritis will be a bit quieter, so they don't seem connected, but most definitely are. Another instance with the psoriatic kind. You can have horrible fusion, and barely any skin problems, or the other way around, or both years apart. Just another weird disease.

nantynnnie, for a very long time no one believed women got AS, just like they one day realized more women die of heart disease than men, but only men could get it. They are discovering more and more cases of AS in women. it is genetic and familial, so why they would think that is beyond me.

I always thought Jake got his POTS symproms from me, but I guess it's a coincidence, or he just had no chance between his dad's gene's and mine. We have a cesspool, not a gene pool..good grief. morgan

[ramakentesh]

When I first went to my Rheumy i was after another specialist told me that the chances of me ever working out what was causing my back pain were 'very small.'

I was also 'doctored out' in that he was the next of about 10 different specialists id gone to in a row.

he was a bit of a weird guy - not very personable and I was pretty tired at the time. he told me matter-of-factly that I had ankylosing spondalytis and that he was 100% certain because I had tested positive to the gene and because of the changes to my sacroiliac joints. he asked me if I suffered any other peculiar symptosm in the past like scalp issues, eye problems or achiness. I told him i had POTS and that I had a weird thing on my scalp for a month or so when i was 18.

He just stared at me, told me to take antiinflammatories every day and to report back in six months. It went back into remission so i never bothered because my POTS was far more annoying and far more constant.

Like nannie has said, my AS comes and goes and so does my POTS, but POTS is always present to some degree whereas AS can totally seem to disappear at times. I also get weird gut symptoms at times.

Im guessing my version of POTS would be the hyperadrenergic type - elevated NE on tilt, tremors, cold sweats and restlessness are common symptoms for me. And when i get dizzy it literally feels like im being choked. My carotid arteries im guessing.

At the moment my AS and my POTS are both flaring which is a first and its not a great time I get lines on my fingernails when im symptomatic and my eyes fill with vitreous floaters too.

[ramakentesh]

I know this doesnt relate to POTS but I wasnt even aware there are five types of AS. Id love some details on those.

[morgan617]

Here's some info:

http://my.clevelandclinic.org/disorders/sp...y_overview.aspx

It should shed some light, I hope. I'm pretty sure mine is hyper too, as is my doc. You can actually watch my jugulars get extremely engorged and my neck turn scarlet as my BP doubles over a few minutes. I hate it. I sometimes feel like someone has there hands around my throat squeezing. Gross.

Jake gets tons of floaters, he just saw the doctor for them and was diagnosed with ocular migraines, besides the regular ones he gets. His AS never goes into remission, but it may be because it started at such a young age. It generally occurs from the late 20's to early to mid 40's. The rheumy probably didn't know what to do for you, because there is really no treatment, but he does sound a bit weird. You can also get it in other joints. jake's started in his feet. Every single joint in both feet. Now, his feet get sore, but his back gives him the most trouble.

If that site doesn't work, just google spondyoarthropathy and you'll get a ton of hits. morgan

[ramakentesh]

thanks for that info. Im 31 and I contracted AS shortly after my 26th birthday. Ive had two really bad attacks of it, but I also get periods where it is quite constant but relatively mild. I notice that some things seem to bring it on. In the past, beer has even a very small glass, potatoes and especially pasta and cous cous.

yeah my throat always gets red and hot when my pots is bad. Ive also noticed the veins in my hands disappear when this happens.

[mcaimless]

Nantynannie: "Personally, I think Fibro is diagnosed when they can't figure out what you really have. I think many Fibros have dysautonomia and/or a connective tissue disease that does not fit into the doc box."

Interesting idea but in my case anyway, I have the classic fibro signs and symptoms; multiple tender points, brainfog and cognitive dysfunction, extreme fatigue, IBS, migratory pains, etc. As I said before, these were present in part when I started my dysautonomia and POTS but they progressed while the ANS dysfunction leveled out and the POTS is only a sometime thing now. So in my case the dys preceded the fibro and was very disabling and led me down many wrong alleys for quite some time.

I also started having bilateral joint pain and inflammation that did not fit into either fibro or the classic RA setting and except for a mildly elevated CRP I was completely seronegative for the usual suspects for inflammatory arthritis or connective tissue disease. It took me practically demanding an MRI of my hands to finally get evidence of MCP synovitis that finally convinced my rheumatologist that I have an inflammatory artritis as well as the fibro. It was a very long uphill battle and now that I've finally gotten the dx I am more focused on the best possible treatment plan for me.

I have a female friend with both AS, Lupus, and fibro so we can have any combination of many of the autoimmune diseases that are accompanied by FMS/CFS syndromes. I like to say that while the RA is concering for me, the fibro has really kicked my butt.

[Rosie]

You made a connection! Good on you. I hope it will lead to a better understanding of your medical problems and tx for you.

[nantynannie]

Mcaimless,

I knew when I posted that note about fibro, I would probably hear about it. I am not saying fibro isn't "real" I'm saying I think it can often times be a misdiagnosis. I hated my fibro diagnosis because it carries such a stygma and it's not "provable". It sounds like we had similiar experiences. I also had a mixed connective tissue disease rx for a while.

When I was diagnosed with fibro, I too had all of the classic symptoms and high CRP, and high IL4 & IL12 (all inflammatory), otherwise absolutely normal on the classic connective tissue disease blood tests. Then they found the synovitis in my hands so they decided it was RA (sero negative). It took a long time for someone to xray my SI joints and test for HLA B-27. Turns out that every one of my fibro symptoms were actually caused by the AS and the Dysautonomia. If you look at the symptoms list, they are all overlapping. Do you have symptoms of fibro that are not on the dysautonomia list? I wonder now because so many fibro/cfs patients are being found to have dysautonomia and I am thinking the others have AS My aunt is also diagnosed with fibro, though she shows the classic POTS symptoms.

Morgan,

"I always thought Jake got his POTS symproms from me, but I guess it's a coincidence, or he just had no chance between his dad's gene's and mine. We have a cesspool, not a gene pool..good grief." Thanks for the laugh!

Rama,

Do you get deep ridges in your fingernails? I also have horrible floaters that came on suddenly.

Ann

[ramakentesh]

'Do you get deep ridges in your fingernails? I also have horrible floaters that came on suddenly'

Oh my god yeah! I do on both counts - the ridges come on when my POTS or AS is flaring up and i get them on all my nails, but probably most notable on my thumbs and big toes. When my POTS flares badly my eyes fill up with vitreous floaters! I told my POTS doctor about this and he was dismissive and told me that he had never heard of any other patients getting this.

When I mentioned this to my old weird Rheumy he nodded knowingly but never said a word about it. Gees Im glad im going to see a new Rheumy soon as Ive got a whole list of things I want to talk about.

Ive been corresponding with someone here and they made me realise ive got a whole lot of other symptoms that may be being caused by AS - periodic pain when urinating, stomach upsets for no apparent reason, tendonitis and pain i thought was RSI that continued after I stopped working at my work desk.

My POTS tends to wax and wane as does my AS and they cycle in a definate way - if one is particularly bad I know the other will come in in the same way.

What is of greatest concern to me is that AS is described as a progressive disease. Does this mean my POTS will also progress? My POTS specialist said that its rare for this to occur but he has never encountered any other patients with POTS who also have AS.

I wonder what my GP will have to say about this one - probably dismissive as usual but im a persistant person.

I also read somewhere that AS tends to 'burn out' after a while - god can only hope!!

[ramakentesh]

I just found this slightly interesting link to a study that examines the connection between Ankylosing Spond and hypermobility which might be of interest, although I dont have hypermobility.

http://74.125.95.132/search?q=cache:RzclOX...lient=firefox-a

[morgan617]

Jake can't get his fingers within 38 inches of the floor, no hypermobility there! As far as "burning itself out" haven't heard of that one. it does happen with Rheumatoid, but that is a completely different type of arthritis. Many people assume jake has rheumatoid, but actually it's the explanation for the sero negative part of sero negative spondyyloarthropathy. No rheumatoid factor.

I've had a dx of Fibro since about 25 or so. I never ever bring it up, even though I believe it does exist and they are now finding some tests that actually do show some abnormalities. I believe some day it will be as legit as MS and other illnesses that are blown off as neurosis. For now, it is definitely used as a garbage can diagnosis for many befuddled docs, when you don't fit your round symptoms into that square box of illnesses.

Jake just went to the doctor, he's having so many problems with floaters. My personal theory and lets face it, we all have one, is that the autonomic system is actually very fragile and so many things can upset it, and throw it off, that for as many illnesses as there are, there are reasons for autonomic dysfunction.

It's such a control freak system, that anything that bumps it, sets it off. I think of it as a by product of the real thing that's going on. I know there are people on here that only have POTS and no other diagnosis, so I guess that means it sometimes has OCD and goes out of whack for no reason. Not trying to be funny, unless that makes you laugh, but it makes perfect sense to me. When the bowel is messed with in surgery, it just flat out stops working for awhile, whether you were actually working on it specifically or just moving it out of the way. It will eventually get itself going again, but the autonomic system seems to be a bit more stubborn.

There are very few people on here that don't have other problems besides POTS, so I just think of it as a secondary illness. NO less awful, just caused by something else that sets it off. Or the vice versa, Why? who knows, why do some people get exposed to HIV and not get it and others that are careful do? Sometimes we just don't have the answers. morgan

[mcaimless]

I really think that the fibro/dysautonomia/autoimmune thing is a chicken/egg cycle that nobody has any real answers to . My personal theory is that fibro/cfs is an offshoot of other disease processes, be they viral, bacterial, autoimmune, or damage from other stressors on the body. I did NOT want a fibro dx at all, I thought it was bogus and a trashcan as well, but the more I've researched it, the more I see that it is a very valid and even fascinating syndrome. And my signs/symptoms definitely fit it to a tee.

When I first got sick with POTS one of my husband?s colleagues, an ER doc at a hospital where he worked, suggested that I had either CFS or fibromyalgia. I was outraged because I certainly had no pain issues at that point and could see no correlation at all. She just replied that she had treated thousands of FMS/CFS patients and that my presentation was very typical but if I didn?t believe it then that was my choice. Then slowly I started to accumulate more and more of the FMS symptoms, over the course of a year and a half until I had to face the fact that I was probably wrong here (certainly not the first time as it happens?)

I also think that many autoimmune diseases like AS, RA, Lupus, etc can overlap and the pt presentation does not fit into the classic pigeonholes. All you can go with are the ones that seem to fit the best in your particular situation. In my case I've had numerous x-rays and MRIs of my spine, SI joint and many of my joints. Since one of the defining criteria for RA is synovitis in the MCP joints and this was a definite presentation, this is what seems to fit the best in my case. For me, finally feeling comfortable with a dx was crucial to moving on towards working towards a treatment that will do more than just placate my symptoms. I?m not much of one for band-aids even though I realize that often we do need them if we are to maintain any functionality in our lives.

I think that all of these syndromes and diseases stem back to a dysfunction of the immune system and that is why I am exploring the immune modulating use of the drug low dose naltrexone LDN). Many of us here question the why?s of how we got sick. Why did I get POTS? Why RA or AS or any other diseases? I?ve always thought that autoimmune disease was caused by an overactive immune system that attacked the body. I now think that this is only partly true. A differing theory is that the immune system in autoimmune disease is actually weak and ineffective. And that in autoimmune disease the body?s innate ability to keep autoimmunity in control is defective or inhibited. It?s now thought that a weakened immune system cannot launch an appropriate immune response. Instead the immune response is erratic and ineffective which leads to continuous targeting of self rather than foreign antigen. For me, this seems to make a lot of sense and is why repairing the immune system is key to actually arresting and recovering from most disease. I?ve been in touch with the researcher at an ongoing study at Stanford on LDN for fibromyalgia and there should be a paper published soon, which he believes will encourage more doctors to prescribe LDN for fibro.

Here?s to hoping?

[ramakentesh]

Just found another guy with orthostatic intolerance and AS on an Anylosing Spond forum. He told me that his cardiologist believes they are linked. This is getting interesting.

[ramakentesh]

Ive been thinking about this. When i was young every time i got the flu or sickness I would feel 'spaced out' for a few days which I thoght was normal. Turns out that its not normal at all. Perhaps now I have Ankyoosing Spond Im inflammed all the time and this brings on POTS all the time as well??? Mmm.

[toddm1960]

Well.....well......more of us are out there I'm also a possitive HLA-B27 person all the AS symptoms and a normal flow / hyperadrenogenic POTS person. This is the first thread that I've seen others get the ridges in their nails and bad floaters. This is just one more piece to our puzzle, but the problem I have is with a confirmed mito root cause of my POTS I can not take NSAIDS. These have the same Co-Q10 depleting actions as statins and beta blockers, so I'm really limited to what I can take. great attachments in this thread

[Noreen]

This article states anyone with autoimmune rheumatic disease which would include RA, SLE, AS< Sjogren's, etc. is at increased risk of autonomic dysfunction. It would be nice if the rheumy's are catching up. If the rheumy's start asking for autonomic testing, hopefully testing will be more widely availble.

Autoimmun Rev. 2009 Jun;8(7):569-72. Epub 2009 Feb 3.

Autonomic dysfunction in autoimmune rheumatic disease.

Stojanovich L.

Bezhanijska Kosa University Medical Center, Belgrade University, Bezanijski put b.b. Novi Beograd, Belgrade 11080, Serbia. Ljudmila_Stojanovich@yahoo.com

Abstract

Cardiovascular and neurological manifestations are known to occur in patients with autoimmune rheumatic disease (ARD), often in subclinical form. The term autonomic nervous system (ANS) describes nerves that are concerned predominantly with the regulation of bodily functions. It is comprised of sympathetic and parasympathetic nerves, and their function is complementary. ANS involvement has rarely been studied in patients with ARD, and studies have shown conflicting results. This may be because symptoms of autonomic dysfunction are nonspecific and extremely varied, and may pertain to several systems like the gastrointestinal, cardiovascular, and nervous. Moreover, tests to detect autonomic dysfunction are not routinely employed in clinical rheumatological practice. Another difficulty is to differentiate cardiovascular effects of drugs from ARD involvement. Previous studies on this topic found signs of parasympathetic and sympathetic dysfunction in variable proportions in patients with autoimmune diseases, between 24% and 100% in various tests depending on the methods used. Cardiovascular autonomic dysfunction is the most common type of ANS dysfunction, and was revealed in the majority of ARD patients

[ramakentesh]

Yeah and even when i demonstrated this to my Rheumy he was un interested.

On a better note Blair Grubb - who has extensive experience in treating POTS and related disorders says that mestonin is most effective in patients where POTS seems secondary to other systemic rheumatic disease.

I wonder what TNF alpha blockers would do ? I could get those in a heart beat. Its quite possible that chronic inflammation - through a variety of mechanisms - could cause POTS alone.