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I have eds hypermobile type and have suspected autonomic dysfunction. I'm waiting to see Prof Mathias (UK specilist) about this should be seen in a few weeks.

When I was first diagnosed my problem was pain, after painkillers, physio, OT aids etc the pain is 'do-able' What I find completely disabling is the fatigue I suffer. This is really starting to take a toll on work (which I may have to stop) and family life, not to mention my social life (limited to going to the book club cos I can sit down all evening there!)

Before going down the treatment for chronic fatigue root, I wanted to explore whether the autonomic dysfunction was the cause of the fatigue.

So I was wonderin whether any of you with autonomic dysfunction also have severe fatigue and when it was treated did the fatigue improve or did it not seem to be related?

It isnt my blood presure that bothers me, I dont faint etc but its the other symptoms like intolerance of showers, poor heat regulation, eating late causes me to vomit as I have impaired gastric transit. Going upstairs is exhausting, headaches, blurred vision etc sure you know the type of stuff. All of it I cant put up with but the fatigue is crippling.

Clearly I dont want to spend a year waiting to have the autonomic function diagnosed and treated if it makes no difference to the fatigue as I'd rather explore the other options sooner

I have switched to decaff and have increased my salt and fluid intake and am wearing support tights - not noticed a huge difference

I'm greatful for any help - especially since I'm funding my private healthcare myself!

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Hi steamship and welcome to the forum. I can say that I'm not diagnosed with Chronic Fatigue, but I'm still tired all the time. Walking to and from the bathroom feels like running a marathon on my bad days, and sometimes I need to rest before I can make the long (10 steps) journey back to the bed :D:rolleyes: .

I don't know what to say to help you. I've completely cut caffiene, sugar, and MSG out of my diet. I eat about 5-7 grams of sodium a day, and try to drink 2 liters of gatorade a day, but I have hypotension so that kind of diet may not help you.

Do you have a good neurologist? and have they ruled out thyriod dysfunction? If your adrenals etc. haven't been checked, you may want to consider seeing an endocrinologist.

I wish I could help you more, but hopefully someone on the site will have better advice.

Cheers,

Lauren :)

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Autonomic dysfunction can cause profound fatigue. Some people do well with treatments, such as increased salt intake, compression garments, and medications. Others, like myself, still have fatigue but are able to function on a basic level...and then there is still a group who, despite treatment, still have disabling fatigue. Most of us here only found what group we fit in via trial and error with treatments.

See the "help yourself" pinned topic, and check the main DINET site for common ANS symptoms and treatments (under "what helps").

nina

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Hi steamship! I've missed actually meeting you somehow, so I'll unfurl the welcome banner now. I hope I haven't done it before and brain fog has obliterated the memory.... :D

At any rate, I don't know a thing about EDS, but I do have disabling fatigue along with POTS. As Nina already pointed out, it seems that a lot of people with autonomic dysfunction have trouble with fatigue. For me, POTS and the fatigue proved to be seperate entities. I can get the POTS pretty well under control with Mestinon and the usual precautions (high sodium intake, fluids, etc.) without much change at all in the fatigue. I do have several of the classic CFS symptoms (sore glands, etc.), though, which contributed to the diagnosis of CFS.

Like Nina said, it's a lot of trial & error to find a treatment. Besides meds, I've kept very careful watch of what exacerbates & lessens the symptoms and have tailored my lifestyle accordingly. While it only helps moderately, it's much better than nothing. My dad always tells me to treat myself like someone who's recovering from a concussion -- do what you can, but once you push yourself too hard, you're only damaging yourself further.

I'm sorry you're having to struggle with this wretched fatigue. While it's not life threatening, it can be SO life-disabling. Keep your chin up! :rolleyes: Hope you can find some answers soon! I'm still looking too!

Angela

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Welcome Steamship!

I have a tough battle with fatigue. At times it's almost unbearable and then other days it seems more manageable. Overall, It's severe compared to a "normal" person.

I'm not sure I know what to suggest. You mention that you don't faint; have you had your heart rate checked and blood pressure worked up at all? One of the top researchers with Dysautonomia found that a significant % of people with chronic fatigue were misdiagnosed (they really had POTS or NCS). A "simple" way to check this (though I would advise you have someone with you) is to lay down for 20-30 minutes, still, quiet and relaxed. Take your blood pressure while lying down at the end of 20-30 minutes. Then stand up, take your blood pressure and pulse at 3 minutes, 5 minutes, 10 minutes, 20 minutes and 30 minutes up to a total standing time of 45 minutes. Write down all of the readings you get. If your heart rate increases 30 beats per minute or higher than 120 beats per minute that might be an indication of POTS. If your blood pressure drops more than 20 points and/or you pass out that's also an indication of autonomic dysfunction. You might could consider this "at home" test, see what your results are and then decide if you think it's worth further evaluation and $.

As for the fatigue, in my case nothing has really helped it.

Good luck and I hope you get some answers soon. I know how frustrating it can be trying to find the answers!!

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Welcome Steamship,

At times I have incredible fatigue. I hve previously been diagnosed past positive for Epstein-Barr(CFS) I had titers so it should previous exposure and there was a time when I was so tired I could barely move but it did improve. I usually notice the fatigue in my joints and incredible brain fog. I can't say I have found anything to help but rest when you need it and keep up fluids.

If you have not already done so, I would do what the others suggested to cover all the bases, thyroid function, adrenal function tests etc.

Hope you get answers soon. :)

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hi steamship-

welcome! sorry to hear of all you've been having to go through. i don't have EDS (although i am hypermobile to a degree) but have a laundry list of other things - autonomic & a few others - and fatigue is a HUGE issue for me. not necessarily needing to sleep type of fatigue, but completely unable to functioning normally fatigue, which isn't really much better! mine is definitely increasingly worse the more out-of-control my other autonomic issues are (HR, BP, etc), but it's always an issue to some degree. during years where i did pretty darn well though the fatigue was minimal, and treating my autonomic problems does help some though even these days. i have never been give a CFS diagnosis but i'm sure if i saw a given doc at a given time i would have been (or could still be); i never had the fatigue issues though prior to autonomic issues, and actually didn't have them much when i "just" had NCS (and not POTS/OI along with other things).

so...while it's obviously your call, i wouldn't disregard the possibility of ANS issues relating to your fatigue. and yet i wouldn't hold my breath expecting a magic fix either. i'm thinking you might be able to pursue some treatment for the fatigue itself currently while still following up with the ANS testing? just a thought...

good luck & hang in there,

:) melissa

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Welcome steamship! Good to have you aboard, har get it...I am the class comedian along with steph. Anyhoo, soryy you are at the beginning of a not fun trip. Not to woryy, you will be diagnosed with all kinds of interesting things before you get very far. And not to worry, we have all been diagnosed with the same things.

I used to not tell people I had fibro or cfids, but now I don't give a rip. I have a whole constellation of things and truly believe they are somehow intertwined because of all the overlap.

hope this site will help you and give you some help and lots of support and encouragement. morganinski

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morgan, thanks for the laugh! :)

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Hi Steamship! great to find another UK face here- we're planning a meet soon (well, me Zoe, Becky and maybe Hayley...whereabouts are you? I'm in Oxford, Becky's Chester and Zoe is Worcester I think)

Just to say I have seen Professor Mathias too.

and I agree with you- it's the fatigue and the terrible, terrible aches I get that affect me most on a day to day level.

How old are you? where do you work? Tell us about yourself? I'm 24, and I'm about to move to University in Oxford to take a masters in Medieval English. I've got POTS and Vasovagal Syncope with EDS (hypermobile type).

Hope to see you post often, and it would be great if you wanted to come along to the yet-to-be-organised meet! :lol:

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Guest Finrussak

Hi ss

I was "lurking" your posts (reading without really planning on reply as much of what I was going to say was already said)

and something caught my eye

BLUE SCLERA??? Is this a mark of EDS??? I havent really looked into it much despite Dr Grubbb thsi past spring dx me with JHS(hypermobility) (as one cause of my severe dysauto) which he said isnt really EDS but on the spectrum of being "close"...Im thinking I was so upset he was trying to be gentle.

Anyway my daughter has always had blue sclera (dismissed of course by all of our not so good pediatricians). she was a state champion gymnast ( and therefore flexible beyond the norm) and now in college with some ( but thank God not all of) my sx.So far, she shows little of the dysauto...Im hoping it stays that way BUT I did not realize I may have to keep a tighter eye given the tendencies of EDS and dysautonomics...

Can you please either PM me or email me or reply to the post as to the significance and percentages (like how strong an indicator this is, what exactly it means, can you have a family history and blue sclera without EDS etc etc?)

thanks and welcome to a really nice group of well meaning and great people!!!

Finette

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In the UK Prof Grahame is on of the rheumatologist who has the most expertise with benign joint hypermobility / EDS. His opinion would be that clinically you cant distinguish between EDS hypermobile type and BJHS. So he uses the terms interchangably. Certainly there seems to be a spectrum but there deos not appear to be a clear cut off where one become the other. So it may depend who you see and what camp they are in as to the diagnosis you get.

Or what you want - when you wnat something from a medic you call it EDS when you want travel insurance you call it BJHS!

As to the blue sclera. The eye is mostly made of collegen, however when you have defective collagen this is sometimes shown up as blue sclera. The collegen of the eye is thinner and so looks blue. It tends to indicate a connective tissue problem, but not always. It isnt only found in EDS but also in ostegensis imperfecta and Marfans. Of course these are all linked as they are heritable disoders of connective tissue and there is quite a bit of overlap with them. But also some people think it can indicate iron defiency and people on long term steroids can develop blue sclera.

My daughter is 2 and so its still a bit tricky testing her for hypermobility but the genetist we saw felt she had EDS hypermobility type or BJHS. My other 2 kids dont have blue sclera and are old enough to understand taht mum is ill and the implications for them of being diagnosed. so we made the decision not to take them to the genetist, however they both seem to have hypermobilie joints :lol: but are both very health and happy at present :P

The approach I take with them all is to try and help them understand that for them more than most its important to look after themselves and not to push their bodies. To ensure they dont get overweight and take part in excercise which they enjoy and for them to be very aware of the limits of their bodies and to work with this.

Some have suggested that I shouldnt let our little one do gym or ballet since we know she is affected however I shall allow her to do all these things as she needs a life, and its better for her joints to be supple, toned and supported by strong muscles than to be weak and weighed down by excess weight.

Sorry got a bit off topic there but I'm sure a a mum you'll understand!

Steamship

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Guest Finrussak

I am impressed with your knowledgeable understanding and explanations!!! THANK you. As for the tangent YES totally understandable. As for your little one, I agree with your opinion except Id avoid areas that would overdo...like sports requiring long hours of training...I regret terribly my daughter's having to do 20-30 HOURS a week (!) in addition to school of gymnastics plus meets. While it did make her very strong, I fear it may also have taxed her joints. She is 20 and has mild arthritis in her knees and hips ( from repetitive overuse) and had surgery on her left knee at age 17...they transplanted a piece of tendon from front of leg to inside of knee to replace a shredded ACL...after that lovely injury I pulled her out of competetive sports!!! My rule of one bad injury and DONE ...but hindsight being what it is...if Id have known then what I now do...Id have kept her at the 1-2 per week "fun" level and no further...ribbons and medals be darned!!!

I did a quick med paper search and did NOT come up with other explanations for the blue sclera...just the same few you mentioned-Id think that if she had any bone probs (like any type of the osteogenesis) the osteo Dr who operated would have found it...all those xrays!! and as for Marfan's...her short stature (again gymnastics takes inches off...it really does) and fairly short limbs leaves marfan's out...but I will keep an eye and have her eval for EDS...and yes it is a "spectrum" type description so given her lack of outward sx, maybe it is mild!!!

again thanks for your reply!!!

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