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Discouraged & Facing Possible Eds Diagnosis


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Hey, all. I've been having a really rough week. I got a cold a while back, and as I'm sure you all know, illness is about 10 times worse now that I'm dealing with POTS. And like it usually happens with me, my cold has developed into bronchitis... Fun fun fun, huh?! Yeah. Well, enough whining. What I wanted to say was that I'm now about 95% certain that I'm facing a diagnosis of EDS. And it's gotten me really down... I talked to my mom the other day to get some info on our family history and such, and everything matches up. (Thankfully no sudden death due to cardiac causes or organ ruptures.) I mean, it's insane. That, combined with my own hypermobility, my POTS, and my joint issues combined makes me pretty well certain I'm facing a diagnosis of EDS. And to be honest, I'm partly relieved and partly upset. Relieved, because it's gratifying to know that there's a real cause for this. Upsetting, because this takes away a lot of the hope I had for growing out of it. EDS is for life. I feel like I'm grieving all over again for the life I had wanted to get back. I was still holding on to some shred of hope that I would get over this and move on. But now... It just is so very hard. I would love to get some support from other people with EDS. Tips for dealing with it, lessons you've learned, etc. Whatever you want to contribute is good. Feel free to PM me if you want.

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Hi Anastasia, I haven't posted much on here yet, I do intend to more in the future. :)

I read your post and just wanted to pass on something that was said to me about PoTs/EDS. I have PoTs and have been seeing Professor Mathias, a consultant in the UK. He is generally thought to be the leading expert on PoTs/EDS in the UK and either he himself or a member of one of his teams (ex teams as he is now retired and practices privately only) seem to have diagnosed many, if not most, of the UK users of this forum. He has a wealth of experience in both diagnosing and treating PoTs. I will try and post a link to a paper summarising some of his research.

He believes that as well as PoTs I have EDS also. He calls it the 'umbrella diagnosis'. I said to him that I'd read that if PoTs was as a result of EDS that meant it could never improve or go way. He replied 'not in my experience no. I have seen many patients improve.'

Also EDS, like PoTs, is a spectrum and joint symptoms can also wax and wane.

Personally I haven't pursued a formal diagnosis of EDS for myself yet as joint symptoms for me are mild in that they aren't the thing that's stopping me doing things. My main problem at the moment, along with blood pooling and tachycardia/ bradycardia, is swelling in my toes/fingers overnight and random swelling and redness of hands and feet and always with warmth. Whether this is EDS caused I don't know and I do entertain fantasies of kidnapping a doctor and strapping him to chair until all my questions are answered. I do get over this though! :)

I would also say that I managed to get to 50 without knowing that I had EDS, although when I look back I can see it. Until my symptoms hit suddenly in Jan 2013 I was at the gym 5 times a week and very fit. Yes, over the years I had joint problems but I just thought they were normal. I've had back problems, ankle problems, elbow problems, wrist problems and they have all reared their head, stayed for a time and then gone into the background again.

Anyway I hope these comments help you. I often worry about posting because I don't want to make anyone feel worse in any way.

Like many of this forum, everyday I wonder what is going on with my body and how I'm ever going to find out. I read and read and it just often confuses me more. :(

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Hi Anastasia, I have POTS and EDS and I have made vast improvements in my symptoms as far as POTS goes. I am able to work full-time and exercise pretty regularly. It isn't always easy, and I have definitely had to modify certain areas of my life. (Washing my hair in the shower still causes major dizziness and tachycardia :() At my worst, I could barely be upright for more than a few minutes. I was on STD from work for over 3 months. It was a scary and frustrating time. However, once I found the right combo of medications I was lucky enough to start feeling better. I still have bad days if I overdo it or don't get enough rest. I have gotten much better at listening to my body and telling people no when I need to. I also make it a priority to stay well-hydrated. Granted, I have other issues that are related to the EDS, but for me POTS was the most disabling part. Every person is different, but I wanted you to know that it is possible to improve. When I got my EDS diagnosis, I had the same concern as you. Hang in there! I hope you start feeling better soon. :)

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Barb10, I am exactly like you mild EDS, the warm swelling in hands at night in bed etc.

New research has shown antibodies causing POTS in all patients tested, they are doing more advanced studies soon. If this is the case in EDS also, then POTS wont be for life, hoping for this to be true we could be in luck.

I see Prof Mathias, recently just started on florinef and have already had improvement on 0.050mg, going up to .2mg.

What bradycardia do you get Barb10?

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I have pots, eds, and mcas. My mcas is a far bigger problem in managing my pots symptoms than my eds is. I do have venous insufficiency in my legs most likely due to my eds, but compression stockings compensates for this issue. I score a 7 out of 9 on the Beighton Scale....only my elbows don't qualify. Interestingly, my elbows do strange things...just not what they measure for the Beighton Scale. I do have pain from my EDS but that has been there my whole life and never slowed me down. I have other symptoms of eds as well, such as high palate, blue schlera, and very soft skin, but these are not a problem. Even though I have the hypermobile type and not the vascular type, my cardio and geneticist agree that I should have an echo of my heart and aorta once a year to be safe. I have made some changes such as getting custom braces for my ankles as they roll and sublux (they don't actually hurt, my geneticist just doesn't want me to dislocate while I'm walking) and I have started buying a certain brand of shoes that is expensive but is designed by a podiatrist and has built in orthotics. If you look at my feet when I'm not weight baring, I don't appear to have fallen arches. But that changes when I stand up. The new shoes are expensive but by correcting my feet it corrects the rest of my lower body posture and relieves a lot of the pain. I have mild mitral valve prolapse but that has not progressed in 3 years. The one issue that is probably attributable to eds that is giving me significant problems is that I do have cervical spine instability. I see the neurosurgeon for the first time in a few weeks so I won't know until then what the treatment or prognosis options are but at least there are tx options for this issue. And, there is a possibility that correcting this instability will resolve a lot of my neuro type issues and may even positively affect my pots (that will depend on exactly which nerves are being compressed). So all in all, eds is not a terrible thing. It can be managed.

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Do you think I could have EDS? I have autonomic and peripheral neuropathy, POTS, ME/CFS, plus scoliosis of the spine (degeneration cervical and lumbar and twisted pelvis). I have problems with my joints and my knee has dislocated three times. My elbows overflex (two orthpaedic doctors and a chiro noticed this) and I have lots of lumps under my skin about pea-size plus sore lumps around the side of my feet. Could these be spheroids and piezogenic papules?

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Yes, I realise that, I wondered if anyone else had similar signs. It's sometimes so hard to get GPs to focus on or diagnose such things and it took 8 years of struggle to get a diagnosis of ME/CFS. I've been trying for 30 years to get some help.

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Hi TCP, well those things aren't present in the majority and so it's possible I'd say. As it's genetic there would likely be someone else in your family with loose, mobile joints, though not necessarily autonomic issues. My brother likely has it, and one of my sons has hypermobile joints too. I have sore lumps around bottom of my feet at times, no idea what they are called.

I believe Professor Julia Newton in Newcastle is making links between ME/PoTs and hypermobility too. At times I feel skeptical about EDS as a cause for all the things going on with myself but there's too much research now showing links between hypermobility and autonomic dysfunction for there not to be something in it. There also seems so much crossover between fibromyalgia, PoTs and ME. I don't know whether you've seen the article below summing up perspectives from London autonomic units.

http://ukpotsies.org.uk/wp-content/uploads/2013/01/nrneurol.2011.187.pdf

Barbara

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And also...the (US) doctor on this link says he hasn't seen a single CFS patient that wasn't hypermobile. There is so much crossover between fibromyalgia, ME, PoTs that I personally get confused, overall there are so many people suffering that it really should be sorted out of course.

http://www.research1st.com/2011/10/31/joint-hypermobility-and-cfs/

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Many thanks, Barbara, that is very kind of you and I have read the article and it makes me feel even more convinced. I even have the clicking joints. It sounds like there is a familial link for you as the signs seem to be there. I'm not sure in my family although there are a lot of joint/spinal problems etc

Yes, I read about Julia Newtons' work via the ME Research UK information. I think it looks like it could really be a factor in our conditions and it seems to make some sense to me. It's like the links with ME/MS/EDS/EBV/POTS/Fibromyalgia etc... very interesting though.

Thanks for your feedback and I wish you and your family well

Trish

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barb10

Many thanks for this information. I have saved that, too. I agree we all need proper diagnoses and treatment. Yes there are crossovers of many illnesses and that's what makes it so hard to get where we need to be.

All the best

TCP

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I can definitely bend my thumb down to my forearm and my elbows overflex.

Anatasia

I can understand you being upset, but I never give up home whatever I am now diagnoses with as it gives me power each time something is discovered and named and that gives me a base from which to work. I always believe that I will get well and do all that I can to keep my body healthy. Don't give up xx

________________________________________________________________________________________________________________________________

barb10

I get the burning red hands and feet as I get neuropathic pain all over my body and head.

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TCP,

If you would like more information about EDS symptoms and diagnosis, www.ednf.org is a very informative and active website. It also has a forum called Inspire. It gives resources that explains the various types of EDS and the symptoms and diagnostic criteria for each. (I have EDS and I have those strange papules around my feet/ankles which is one of the things my geneticist used to diagnose me amongst many other symptoms. )

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Thank you for the encouragement everyone! I realize that EDS is not the end of the world, but I was so hoping that the cause of my POTS would be curable, not just manageable. I guess it's not meant to be. The soonest we could get in with the doctor who wants to investigate EDS is May, I have a while yet to wait. Ugh.

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My doctor told me recently that I am hyper mobile - I don't know if that means I have EDS type 3. I think I felt the opposite to you on getting that diagnosis - sort of relieved. Relieved I have an explaination, I know what is causing it and I think there are things that can be done to help. I've always felt that a weights class that I go to helps, I'm going to try and go more often (I always lift moderate weights), I'm hoping that dietary changes will help.

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