Do you have scoliosis, double jointed, MVPS?Odd overlap- Connective Tissue Disorders?

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Coxy, please let us know what Judy Whittemore tells you in the way of more information.

Also, I am wondering if anyone has an odd gait - "pigeon toed" or feet pointed outward? I guess it could be a result of scoliosis, but my daughter has one foot turned at about a 45 degree angle when she walks. I have the same problem but with both feet and the angle is not as great as hers.

And, I wanted to mention that a man I know was dx with CFS and within six months, he developed eye cancer, which I would think is a pretty rare cancer. Since eye tissue is a type of connective tissue, I believe, it would make sense that the XMRV or MLV attacked the connective tissue or made it more susceptible to cancer. But note the connective tissue nexus, again.

Thank you for your thoughts.
 

helsbells

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Eyes have a lot of collagen and I have had troublesome symptoms ever since diagnosed with ME, it is a personal terror of mine that I should lose my sight. i was also told that if you have a EDS DX we are not good candidates for lasik but i have no specifics on that, just know for me personally as much as I would absolutely love to have it done I have enough problems with my eyes to understand it is an unacceptable risk.
 
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That is a good insight. I never thought about all the "eye procedures" that involve surgery, like Lasik. I wonder if cataract surgery is okay. Sooner or later, a lot of people have to have them removed. What do you think?
 

Athene

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My mother has had CFS for over 40 years and has had extreme eye problems. She was completely blind for about three years and remained blind in one eye for several more. Now she has distorted visions, pain, lots of problems.

Well she had her cataracts removed and she was absolutely fine. She recovered very well from the surgery and was delighted with the improvement in her vision, despite the distortion still being there, obviously. She said all the colours looked amazingly vivid and she had forgotten how pretty everything is when it's not all half grey. She had just one eye done first as a precaution, since she was not sure how it would go.

Interesting about lasik. I was seriously considering it a few years ago but my father (s surgeon) warned me against it, as about ten percent of operations result in starbursts or other problems. He said surgeons could not get proper liability insurance for performing that operation because of the exceptionally high rate of post operative problems. It would be interesting to know if research has been done into any pre-existing medical problems those people had?
 

helsbells

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I know Victoria even back as a child before illness struck I used to be terrified of the thought. Incidentally there is info to be gleaned from google re eyesight and EDS. Actually for once we a have good NHS Dr who is an authority and has published a fair few papers on EDS. He is a Rheumy so does come at it from that angle but has written a paper touching on fatigue and has talked about panic disorder and POTS. I was diagnosed by a Gastro so those in the know understand it can affect many bodily systems.
 

boomer

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There almost seems to be a relationship between scoliosis and fibromyalgia based on the numbers of people who complain about having both. It would be interesting if the scoliosis societies would send samples of blood from 10 people with scoliosis to be tested for xmrv.
 

sandgroper

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Hello
I have been researching this as I have many of the EDS signs (can bend over and put palms flat on the floor, touch thumb to forearm) have very prominent
veins showing though the skin on my chest, problems with feet (flat) joint probs (mainly hips), My echo showed only mild mitral regurgitation but I suspect this can
change over time. If I was not so disabled I would see someone who could dx this but I am lucky to be able to get to GP. The POTS symptoms I experience could be related to the EDS. Not sure that it explains the severity of my symptoms though.
 

filfla4

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I'm very interested in this too. I dislocated my pelvis in childbirth. Two of my first cousins have scoliosis and my son has an ever so slightly turned in foot. I have recently been to see Prof Kenny De Meirleir in Brussels. He's running a whole barrage of tests and I have yet to get the results in January. However I did mention the pelvis to him and he totally connects it to my ME. I also asked his clinic for my elastin result which has come out normal: "The result for Elastase is 61 (normal). The reference range is 0,00 – 150,00)." I am also now having problems with my left foot and left knee. I will no doubt be discussing this further with KDM in January.
 

Sushi

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I'm very interested in this too. I have recently been to see Prof Kenny De Meirleir in Brussels. He's running a whole barrage of tests and I have yet to get the results in January. However I did mention the pelvis to him and he totally connects it to my ME.
I will no doubt be discussing this further with KDM in January.
Hi filfla,

I also have a mild form of EDs, but never could get a doctor interested in it. I am seeing KDM in January also, and wonder about discussing EDs since the time will be short. Do you think he sees any way to treat it or does he think it would improve with the other treatments he gives?

Did you get your treatment plan yet, or do you have to wait for your January appointment?

Sushi
 

filfla4

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Hi Sushi,

In KDM's clinic, before my appointment itself, I filled in all sorts of questionnaires. When I went in to see the doc himself, he asked me several questions and he took detailed notes which he put in my file. They were questions like car accidents? (in my case yes, with whiplash, and a scar on my lower lip to show it!) Surgery? (my case tonsilectomy, appendectomy, caesarian section). Blood transfusions? (No). Can't think of the rest.... I mentioned the dislocated pelvis in childbirth and he said he saw this often in ME patients. (I'm not sure if he meant specifically the dislocated pelvis or ligament laxity in general. I think it's more likely the latter). He told me that this is often due to food intolerances which cause inflammation and ligament/muscle weakness, which can be improved with diet. (I hope I'm reporting this to you correctly!!) On the Redlabs website (http://www.redlabs.be/red-labs/our-tests/immune-function-assays.php) they describe Elastase as causing "damage to connective tissue". This is why I asked for my elastase result. But now since it's in the normal range, I'm confused.

I'm still waiting for my main results, due in Jan. I also have been asked to submit another stool sample. I have the kit and am waiting for the christmas period to be over before I send it off. This will probably delay things even further.

I have another appointment with KDM on 27th Jan. This is tentative so far, depending on my results being in and his report being ready. I have the option of either travelling back to Brussels or having a telephone consultation. I think I'll probably go up to Brussels. I'd rather discuss his treatment plan properly.

filfla
xx
 

Esther12

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Hyper-mobility is also thought to be associated with neurological problems. I remember reading that suffering from a connective tissue disorder is the best predictor of going on to suffer from CFS.

I think it's a pretty under-researched side of things though.

edit: oops - I've only read the first page of this thread, and hadn't noticed it went on!
 

Sushi

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Thanks filfla,

That is helpful. I don't know what to think about elastase. I think there are other markers for connective tissue problems too. Still, it would be nice if it got better. I have had prolotherapy to tighten ligaments, but there are so many of them and I am always going out of whack! I do notice that when other symptoms are worse, the connective tissue stuff is worse too.

What US lab does KDM use for stool and digestive tests? I have done 2 with Genova and am hoping that those results will suffice.

If you do go to Brussels we may meet though I leave the 27th. :(
It would be nice to meet and exchange ideas. And, I agree, though traveling is hard, it would probably be good to discuss the treatment plan face to face and ask questions etc.

And Esther, the top Autonomic specialist in the States, Dr. Grubb, says that when a new patient walks in the door, he can take one good look at them and usually will see Eds symptoms. So you are right there is a connection that is often overlooked.

Sushi
 

sleepy237

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I can't remember having problems in childhood. I recognised I was bendy somewhere in my 20s, I always had a recurring knee pain with swelling ( a gp called it housemaids knee back in the 90s) By 2004 I was having back pain alot, and would have to sit down on long walks in cities etc with friends, eventually I went to the docs with the pain, she recognised hypermobility straight away, physiotherapy sent me to rheumatology where they diagnosed the syndrome 2006. Not long after this a matter of months I crashed with fatigue and then onset of the whole syndrome we all call CFS/ME. A rheumatologist will define what type of hypermobility yu have. All I remember was maneuvering joints for them and being measured, but because of the last three years i would like a rereferral to test for collagen defects and rule out more serious EDS types. As far as I know it is Benign Hypermobility Syndrome or sometimes called Ehler Danlos type 3 but there are overlaps. The defining criteria are here http://www.hypermobility.org/beighton.php
 

SOC

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I remember Dr Lapp checking my daughter and I for hypermobility, but only a quick check by bending wrists and fingers. My daughter was definitely hyerpmobile in wrists and hands, but not enough that we ever noticed before. Maybe it was ligament laxity? I think he said he often saw it in ME/CFS patients, which was why he was checking. Don't know what it means, though....

I, on the other hand, am not hypermobile -- the opposite, if anything. Even as a gymnast, I could barely do a backbend. And yes, you can be a gymnast without backbends -- you have to be a bars/vault specialist. :) You can imagine that my coaches put plenty of effort into making me more flexible, but I never got a flexible back: arms, legs, hips, shoulders - yes; back - never.
 
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I have some of those symptoms.

Hi Me2, I wanted to ask you if anyone in your family has a similar combination of symptoms that I have. I have an undiagnosed connective tissue disorder that doctors say is similar to EDS though not one of the types.Out of the symptoms you posted I have:

A connective tissue disorder
Mitral-valve Prolapse
Hypermobile joints
Short stature
Scoliosis
Muscle Hypotonia

When I was younger I also had:
Sleep Apnea
A tendency to fall down easily and have poor body control

Also besides those listed I have/had:

Large adenoids
One less set of ribs
Widely open fontanels (when I was just born only)
Delayed gross motor skills.

I'd be interested to know if you've come across anyone else with a similar combination of symptoms. Feel free to email me if you want to talk about this. You can email me at BranmanB@hotmail.com. Thanks.
 

sleepy237

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I really think it is about time that the rheumatology field got more involved in why this link occurs. I read that pots (wikipedia) is usually lifelong for ehler danlos syndrome. Does this include benign (cough at benign) hypermobility syndrome too?
 

Esther12

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Apparently a lot of connective tissue disorders are related to some problem with a particular protein, and this protein is also important for neurological things. I've seen this mentioned as a link for automnic and hypermobility disorders.
 
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This is fascinating for me - I have had connective tissue trouble for years before I got really ill and was diagnosed with ME. I was born with talipes (club foot), a shortening and tightening of the achilles tendons. When I was little I used to have to do exercises to address my flat feet.

As I got older, through my teens, I had terrible back trouble, and had to see lots of osteopaths and chiropractors, and the general consensus was that one of my legs was shorter than the other due to the tight achilles, and my back was compensating, but I'm not convinced it wasn't to do with tendons in the spine now.

I have a lot of hip trouble, the joint clicking in and out when I walk, and pain. I've had x rays but they were inconclusive (all this before ME). My big toe ligaments click in and out of their channel all the time, particularly when cold, and for some reason when they click I also get a nasty clicking feeling in the back of the neck.

I've said for years, I'm sure there's something not right with my connective tissue, so this is really interesting. I have bad floaters, but only in my left eye. My sister was always double jointed, and my wrists and hips are very mobile.

Thanks for the thread, would be very interesting to see if anyone has done any research into this from a CFS / ME standpoint.
 

sleepy237

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Purple Foods may be useful to help HMS/EDS/CFS

Was trawling the web and found on a hypermobility forum that Mariah Carey is eating lots of purple food. It stops collagen breakdown: useful to the padding around our joints.
They are also rich in bioflavinoids and may help improve memory problems.

Food that help strengthen links between collagen fibers
Anthocyanidins (Antioxidants) help strengthen the links between collagen fibers. Anthocyanidins (Flavonoids) are responsible for the blue color in the produce.
Fruits: Blackberries, Black Currants, Blueberries, Wild Blueberries, Plums, Elderberries, Purple Figs, Purple Grapes
Vegetables: Beets, Egg plant skin, Purple Asparagus, Purple Belgian, Endive, Purple Cabbage
Unique Purple Produce in India: Jamun, Phalsa, Purple Guava, Purple Carrots
New Breeds in United States: Purple Corn, Purple Carrots, Potatoes with Purple flesh, Purple peppers, Purple Tomatoes
http://www.indiacurry.com/women/foodscollagen.htm
http://www.thedietchannel.com/Eating-A-Rainbow-Part-4-Health-Benefits-Of-Blue-Purple-Foods.htm

:yinyang: ~Sleepy