Hands

Disclaimer:  This page has obviously been shared somewhere on t’internet and I now receive a huge amount of visitors to it.  I’d therefore like to point out that the information was written a couple of years ago and  I’m now more aware of how EDS in all its forms can affect the hands, causing various types of lumps, bumps and other issues.  I don’t have Rheumatoid Arthritis, although people with EDS are more prone to wear and tear arthritis at an early age, and don’t have any swelling of the joints or restricted movement – the opposite in fact, as EDS causes over-extension.   Excessive pain all over the body is seen in both EDS and M.E., the reason for which is, as yet, poorly understood.  The same goes for muscle weakness.  As we use our hands so much excessive pain and muscle fatigue, even on trivial exertion, is common.

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I apologise for my dirty nails in the following pictures.  I potted some thyme up in my garden yesterday but despite scrubbing with a nail brush til the skin came off I couldn’t get them squeaky clean.  As we say in Cumbria “a bit of muck never hurt anyone” 😉

Photo of flying hand sign

Flying hand sign

Many people with Ehlers-Danlos have significant problems with their hands.  Anyone who  has hands that look like mine is going to be prone to strains, sprains, ligament weakness, over-use injury, sub-luxation, dislocation, tendonitis and eventual arthritis (something to look forward to, yayyy!).

I had my first issues with my hands as a child, though of course I had no idea I had EDS at the time.  My handwriting was appalling and I was constantly made to do lines as a punishment which was supposed to improve the situation.  It never did.  Writing made my fingers really tired but I didn’t know that wasn’t normal and that other kids weren’t suffering the cramps and pain that I was.  I didn’t ever say anything because I didn’t want anyone to think I was a wuss and I thought everyone’s hands hurt when they wrote.

The pressure of writing with a pen resting against the middle finger of my right hand caused a lump to form there which I still have to this day.  I don’t know what it is, I just know it’s not normal and other people don’t have one!

Photo of Ehlers-Danlos finger lumpNow I’m older I have several different lumps on my fingers and wrists.  I don’t know what they are either and thankfully they’re not painful in any way.  They don’t fit the description for subcutaneous spheroids which are common in Classical EDS, as they don’t feel like rice grains and aren’t moveable.  Neither do they fit the description for mulluscoid pseudotumours, again common in Classical EDS, as they aren’t on pressure points like elbows or knees and aren’t on or near any scars. As long as they remain pain-free I don’t think about them.

Photo of Ehlers-Danlos finger lumpPhoto of Ehlers-Danlos wrist lump

My nails (like my teeth and hair) have always been extremely soft and break right down in Photo of nail ridges the wick where it’s painful to cut them off.  I’ve never been able to grow my nails which as a twentysomething used to bother me but I now couldn’t care less about.  For many years I’ve also had vertical ridges on my nails, which I know Diana Driscoll over at Prettyill.com has done some research on (unfortunately today I’m just too tired to trawl through her website to find it, but I definitely remember reading it!).  I know these can be down to nutritional deficiencies but not in this case.  She’s also commented on how her half moons disappeared and I too only have very pale half moons on my thumbs and index fingers – they’ve disappeared from all my other digits.  Weird!

Photo of lack of half moon

No half moon.

I might have the facial skin of a thirty five year old, but I have the hands of a ninety year old.  My veins are excessively prominent both on my hands and fingers (I’m assuming due to thin skin) and I have the classic “elephant knuckles” of many EDSers (which still makes me question whether I have crossover Classical EDS).  My hands sure aint pretty 😉

Photo of Elephant Knuckles

“Elephant knuckles”

Photo of prominent hand veins

Prominent veins

Despite everything I didn’t start having significant pain in my hands until I was in my early forties when all hell seemed to break loose.   Pressing the button on the TV remote became painful.  Picking up a kettle full of water became impossible.  Taking the top off a jar of jam eluded me.  Doing any activity involving continual pressure, like writing, sent my hands into painful spasm after only a sentence or two.

It was then I needed to start wearing wrist supports, Oval 8 finger splints and simply stopped doing many of the activities I used to take for granted.  One of the best things I ever did was buy a Newtonz Superkettle, which stays hot 24/7 and provides boiling water at the push of a button.  It’s brill and only has to be filled every two or three days 🙂  Not lifting and tilting a kettle ten times a day has helped my wrist pain no end.

Oval 8 finger splintsIt’s amazing the issues we face every day without giving them a seconds thought.  It’s only when I come to write posts like this, and concentrate on the disabling nature of EDS, that I realize the profound struggles we sufferers face in just about every aspect of our lives and once again I’m proud and astonished we all cope as well as we do!

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44 thoughts on “Hands

  1. drmom5

    Mast cell disorder, connective tissue disorder, fatigue from writing. You know you have mitochondrial disorder, right? Is that how I found your blog?

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  2. antjekipp

    I never, ever have time to look in the mirror, much less my hands- much less my EDS. Have to look at my hands- but exactly- on your blog, and Thank You for defining them, exactly so, for- what, I’m not sure. It upsets and comforts at the same time- loathsome to feel someone else is going through this ( summer sucks- did before anyone SAID what in hell EDS was, those hands were so awful, painful- hell, you know )- am crying SEEING them.

    Too, too busy with my son with EDS, now epilepsy. Funny to be too busy- or plain, old avoidant. Comforting in some way to read this, so thank you- and I’m awfully sorry you’re experiencing it also. I’m an artist- plays Holy Heck with the studio time, let me tell you gee whiz! 🙂

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  3. Elizabeth Milo

    Wait. My hands have always been fatigued from writing. That doesn’t happen to other people? What is flying hand sign? I have prominent veins, too, and the kettle KILLS me! I just injured myself chopping veg last week. Quite badly. And my hands and fingers ache since being sick. And vertical ridges appeared after I got sick. I always used to open jars for my Mum and hate the weak feeling I have now. I think your hands look lovely. I’m a big fan of veiny hands that look like they’ve lived life. 🙂

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    1. bertieandme Post author

      The flying hand sign indicates hypermobility – normal people can’t bend their hands like that! Have you done a Beighton Score check for hypermobile joints?

      Until my body fell apart when I turned 40 I prided myself on being really strong for a girl. I bent a chisel once doing some DIY (despite having ME at the time!). My boyfriend, who was a plumber, told me it was impossible to bend a chisel – so I showed him mine and he went “holy crap you freak!” LOL 😀

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      1. Elizabeth Milo

        I always prided myself on my strength! It’s been one of the hardest things to lose. “I am 5′ and (was) 7 stone and I can do anything you can do!” I would lift kegs at work, carry huge trays full of food and pints above my head, I could lift people on my back. I loved strength. I’ve never done the check that you mentioned, but my hands certainly can bend like yours in the photo, more maybe… hmm….

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  4. Jennifer H

    Hi there. I found your post while I was looking up other physical ailments. I have a (now calloused) bump like that on my right ring finger’s top joint, as well as the one by the wrist. I also don’t have half moons on my fingernail beds, except for some slivers of white on my thumb beds…. I didn’t know about EDS, but I’m going to print your post and show my doctor. The vertical ridges on my finger nails are also present. I’m 31, but pain in my hands showed up early on as a child, especially after playing the piano. Now they camp up every now and then when I’m closing my hand in a way where my thumb meets the other fingers, or when I’m helping zip-up my son’s jackets. They also look like “old” hands, and started looking like that in my teen years. Thank you for your post, because being adopted, this has showed me that others have similar things they’re dealing with. And now I may know why.

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    1. Jennifer H

      But wait, I don’t have elastic skin…so it’s not EDS, sorry I didn’t read more thoroughly that those bumps are related to EDS. I actually have many other bumps throughout my body, but just underneath the surface (in the forearms, neck, back, chest, underarms and groin area). Many doctors have had ideas of what it is, but still haven’t given me a definitive answer and have left it at their assumptions without letting me know how to prevent/treat the issues 😦 Also, now I’m getting red lumps around my elbows and knees, which feel like bruises, but they’re not…they’re making movement with my knees and elbows uncomfortably painful. Anyway, sorry for posting my problems. There’s just an un-soothing and lonely feeling when there isn’t an answer given yet for what I’m experiencing. I really hope my son doesn’t inherit these things from me.

      Take care with your journey of what you are going through. And thanks again for your post/blog.

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      1. bertieandme Post author

        Hi Jennifer

        I totally understand your isolation and frustration when you have symptoms but no-one knows what’s wrong. Being adopted and not knowing your family’s medical history must make the situation 10 times worse.

        You don’t have to have stretchy skin to have Ehlers-Danlos. The most common sign is hypermobility of four or more joints – you can see some pictures of mine here https://mastcellblog.wordpress.com/eds/

        If you’d like to know more about EDS have a look here http://www.ehlers-danlos.org/what-is-eds/types-of-eds#hypermobile

        Jak x

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      2. Cindy Fowler

        Hi there, I don’t reply to many comments because I would hate to steer someone wrong regarding medical issues, but I thought I’d ask if you’d seen a rheumatologist about your hands. There is a condition called Sarcoidosis that shows up as bumps/lumps on the fingers or hands. I would also be sure that they ruled out Rheumatoid Arthritis. Sarcoidosis may actually be a form of arthritis, but a rheumatologist could rule out both. I hope you get some answers soon!

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        1. Jak Post author

          Hi Cindy

          Thanks for taking the time to comment. I have Ehlers-Danlos syndrome which gives all sorts of lumpy, bumpy symptoms all over the body – hand issues aren’t uncommon and I have to wear both splints and braces to avoid sprains, strains, ligament tears and dislocations. No RA thankfully, though anyone with Ehlers-Danlos will be prone to early onset wear and tear arthritis as our joints overextend constantly. I am under the care of a rheumatologist, not that they can do much as EDS is a gentic disease.

          Jak x

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  5. Annette

    A “writer’s bump” on the middle finger is actually quite common.
    The bump on the side of the finger looks much like a small arthritic node that I have. It’s the only one I have, slightly colored as seen in your picture. Possibility?

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    1. Jak Post author

      Thanks for the info Annette. I wonder if the writer’s bump is more common in the EDS population or not? Same with the node. None of my healthy friends have them, but many of my EDS friends do. The EDS population do seem to have more than our fair share of all these lumps and bumps. Jak

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  6. Lynn D

    Hi Was looking up hand images to see why might have for so long such visible veins. Getting even more so below neck and on legs latley. Father had same skinny arms with veins raising skin up. The bumps on your fingers look like gangli, used to get lots at one job. They said was a way of body padding itself. Also wonder if related to eating alot of high oxalate foods(almonds,spinach).
    My family has been flexible for ever, also the nails… Not diagnosed, have noticed since tried to eat healthy since teen as stomaches that went back to a few sugar items and that makes pain, dizzy…. You might consider reducing or totally removing packaged foods and maybe all wheat to see if a positive difference.

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  7. Deb

    I got sick at age 39. 12 years in the medical system. I finally found Ehlers-Danlos and was sure I had the vascular one, but tested negative. Each Rheumy usually says EDS-H, but I cross over to other EDS symptoms as well. The huge veins was my 1st clue back in 2003. But they sometimes go into full remission. I’ve had 3 downward spirals that ended in a massive hypoxic temporal lobe seizure.
    I live in Chicago and am on the waiting list to see Dr. Brad. T. Tinkle to see what he says. But whilst waiting in horrible pain and despair I met Dr. Jaycox who put me on “Low Dose Naltrexone” therapy. I feel fantastic now. I heal overnight like a “normal.” I take 4.5 mg per day. The only pain meds I need is Advil if I overdo it.
    Titrating the dose up was horrible and it took me 2 tries, but I made it and am now trying to get my sister in GA. on LDN as well.

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    1. Jak Post author

      So pleased you’ve found a med which helps Deb. A friend of mine went from being bedridden with ME to still being very sick but not bedridden after taking LDN. Jak

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    1. Jak Post author

      You can’t see the blog title – my journey with Ehlers-Danlos Syndrome, ME and Mast Cell Disease? Or any of the menu headings which tells you all about my 3 diseases?

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  8. Katy Cox

    Hello, thank you for writing your blog. I may have very very slight symptoms – nothing like yours – I also thought that many people had lumps on their middle finger from writing – still have it (59+) as I still do a bit of writing.

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  9. TC

    Yes, my hands are weird now! I have a lump where my pencil used to press when drawing. It’s still there. I have fatty lumps on the inside of my wrists. My veins popped out the back of my hands. Blood fills my hands and makes the nerve pain worse. My nails are ridged and split and in recent years the nails are flattening out at the tip.

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  10. Paula

    I have Herberden’s nodes and Bouchard’s nodes on the joints of my fingers. It is a sign of osteo arthritis. Osteoarthritis is almost a sure thing to experience if you have EDS.

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  11. TR

    Wow, I have just started researching EDS as the source of my many issues. I can say my hands are nearly identical in symptoms. I also really didn’t have any/many problems til hitting my 30s/40s (am now 44). I have the bump on my middle finger (never thought that was important but did notice others didn’t have it). My hand tires after writing and I don’t enjoy it. I have never to my memory had half moons and my nails have ridges (and have had my whole life). I have elephant track knuckles. My hands look way older to me than my face does (everyone always tells me I look young). I have the wrist bump on my right hand only… anyway, I just found this very interesting and more to keep in the back of my mind as I begin my quest for diagnosis.

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  12. Brooke

    Thank you so much for sharing! I know this post is from a couple of years ago, but it amazed me! My hands look exactly like yours and I had no idea it was related to our EDS! Thank you again!

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  13. Lori

    Your post describes me. I have a “writing bump.” I look 35, my hands look 90. The pain since o turned 40 – unbearable at times.
    Yet, mast cell tests all normal. My latest rheumy didnt give a damn about the pain or disability – so I fired him. PCP has me on plaquenil. I received much better treatment when I was younger and not in Massachusetts. MybPCP wants to help but is at al loss. What treatments have you been offered?

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    1. Jak Post author

      So sorry to hear you are struggling to receive good medical care Lori – it’s very common sadly 😦

      You don’t say if you already have an EDS diagnosis? The symptoms you mention are all EDS, rather than mast cell, related and having EDS doesn’t automatically mean someone will also have Mast Cell Disease (though it is much more common in the EDS population). Are you hypermobile (see the ‘my EDS journey’ in the main menu for pictures of hypermobility)?

      Treatment ultimately depends on receive a correct diagnosis. I’m not currently on any meds for my mast cell disease other than H2 blockers for my stomach acid – that’s because I am ironically allergic to most drugs due to the mast cell disease.

      The pain etc. from my EDS should ideally be treated using a specialist physio and good pain meds. But again I’m allergic to pain meds, and as I also have M.E. I can’t cope with the recommended physio for my EDS! Very complex to have several conditions to deal with and no easy answers I’m afraid.

      Jak

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      1. Lori

        Thanks for your reply. Yes,I have a dx of EDS. I was dx’d in 2013. Even so, I thrilled with the new diagnostic guidelines, because the criterion are much more straightforward and include the comirbidities and “oddities” common with EDS issues. There is no treatment for EDS though. Having the doc sometimes more harm than good – sometimes you get the “suck it up, buttercup” response from docs as they feel that you have thing thing, you should just get used to it. Only the symptoms are treated in EDS…like I have the dysautonomia that is a common comorbidity. I am given beta blockers to help regulate the symptoms. I also take Plaquenil for the “possible” rheumatoid issues I display (although my blood tests are “inconclusive” of course!). I need much more, but the “suck it up” mentality is what I encounter of late.
        My worst problem is not looking sick. I never look I’ll-even my X-rays/CT scans “lie!” OT had happened with my avascular ne risks of my hip (“your X-rays are fine”, I was told. 3 wks later, I was in getting a total hip replacement, and the surgeon was surprised when his thumb went right into by femoral head. I heard the same thing about my L shoulder. The 5th doc I saw finally said he’d “clean out the joint” – then he gets in there and I have zero cartilage left. I need a shoulder replacement now. Even dental issues are a nightmare: I go in to get a root canal – the doc finds an odd “channel” from the tooth out to the roof of my mouth…and my tooth is literally “mush” -but the roots are completely calcified – so hard he couldn’t drill. So he says “Lori, you are a medical anomaly. I haven’t seen anything like this in 40 yrs.” So, I’m about to lose a 5th tooth in as many years to this weirdness.
        Mast cell was always on the mind of a former doc-I do have all the symptoms. But since the tests are what the diagnose on, I’m not even treated for the pain, loss of use of my hands and feet, random swelling etc – all because my body doesn’t “test” properly. It’s maddening.
        I was in really good shape when I stared getting sick. I have always pushed myself to do a lot – and I do more for myself than any physio could. In the US they are are young jocks that just give you lists of exercises and they go off and play on their phones. It’s silly. I know more of what to do bard on the decades of phicak activity/injuries/recovery/research than these so called therapists. I do the mandatory time with them after surgeries just to “play the game” to prevent being labeled no compliant. But after that – I do my own things st home. I know my body, understand what I need to work on and I do what I can, incorporating a lot into the things I do to care for myself, home, and parrots. Stabilization is paramount. I’ve managed for a year now with a shoulder that needs replacing-I’ve strengthened the supporting musculature and modified my movements to make things work.
        Sorry to prattle on…thanks for sharing your issues in this blog. It’s so rare to find someone that “gets it.” So – thank you!!

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        1. Storme

          Wow. Lori,
          I could have written that myself’ I would have to tweek teeth, only for broken bones, as i have decent teeth; an allergy to dentists, i am thankful for the teeth! But, you’re not alone!
          Take care!

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  14. Ashri

    Hi, i’m ashri, 32 y old.I have every symptom that you explained… i also have heavy strech marks after pregnancy. I don’t wanna getting worse… How to treat eds? What should I do to get more healthy and more comfortable life ..? Is there any asosiation that support patiens with eds?

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    1. Jak Post author

      Hi Ashri

      I can only speak from personal experience as I’m not any kind of expert, but I’d suggest you get a firm diagnosis from a medical professional. There are various connective tissue disorders, and other diseases with similar symptoms, and you won’t know for certain you have EDS until you see a specialist.

      There are patient organisations depending where you live – see this list https://ehlers-danlos.com/support-groups/

      EDS isn’t curable sadly but there are various things that might help, such as specialist physiotherapy, orthotics for shoes to correct rolling ankles and posture, braces for joints, painkilling medication etc. Your medical specialist should be able to discuss your needs with you as we are all different and need different types of help.

      Jak

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  15. S. Kreutner

    Hi!
    First, I want to respond to the comment, “My hands sure ain’t pretty.” I always considered expressive hands more attractive than magazine models. Yours speak (including the dirt under your nails). That makes them way beyond pretty. I guess I’m a little narcissistic because they remind me of my hands (strong workers, despite the aches and pains). Second, I want to say that the veins sticking up on your hands are normal for working hands, or so I’m told. You know how pictures of body builders flexing always look all gross and vein-y? That’s what happens to hands when you over work them, too. If you feel the need to reduce it, you could try a cold compress, or try raising them above your shoulders for a while when the veins get bulge-y (this works short term). From what I’ve read (and the more I read about EDS) this kind of vein is pretty standard, even if they’re not technically “varicose.” Mine look like that, and when I actually work with my hands (I love carpentry and gardening even if it’s getting impossible, now) sometimes they swell up and sting like all get out (which suggests some of them might be varicose). Sometimes they leak or burst if I work too long (and then I get a nice, purple bruise). I do not have a diagnosis, although we’re pursuing the possibility of EDS.

    My point is… your hands are lovely. They’re strong and expressive. They’re uniquely you. I know we like to curse our bodies when they fail, but we should embrace them, too ❤

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  16. carolyn gall

    Funny. I never thought about my awful handwriting being becauseof EDS. I got a c in handwriting in 5th grade. My first C. I too have a big lump on my left middle finger. I thought everyone had one. Lol genetic testing tmrw. Just think. They horrible people with medical degrees may not be able to say i have somatofrom disorder anymore. They wont be able to say i convert my emotional pain onto physical pain and that i am depreased and have anxiety, but i just dont know it. I may actually be allowed to be in pain. How weird will that be!! My dad, my son and daughter are waiting too. Will it explain their symptoms? I say yes! You should have seen our faces when we realized not everyone can scratch their whole back without assistance. Lol my son was convinced averyone could loop their fingers one over the other. Who knew? Wish me luck. Thanks for the affirmation.

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    1. Jak Post author

      Isn’t it brilliant when you finally have the lightbulb moment and realize you’re just not like other folks and there’s a very good reason why you’ve struggled your whole life?! Good luck with the testing! Jak x

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  18. kqwrites

    This is such a relief. I was trying to figure out why I have bumps appearing on my finger joints. They’re almost identical to the ones in the photo. I was recently diagnosed with E.D.S. and everytime I look it up, I discover something else that I’ve had all my life and thought was normal!! Thanks for writing this.

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  19. Pingback: Writer’s Bumps: An Endangered Condition? | Marie's Meanderings

  20. Wendy Joseph

    I have EDS and a few other things. I suspect MCAD. I recently went to a doctor and she said she didn’t think I have it. The color changes I get can be as a result of pooling from postural orthostatic Tachacardia or “allergies”. She did take my blood to run more tests. I haven’t had the best luck with doctors being knowledgeable in my area so I don’t have high hopes. I suspect she will suggest allergy shots. (I did them for years in my 20’s). They don’t really fix my problems though. I am more motivated to find the correct treatment as my 16 year has many of the same symptoms and worse with “flares”. I was curious. Do your hands get what looks like clear white bumps under the skin that you can see with you hyperextend? I have a picture. My doctor said it is “hives”. Seems like it happens when I am exposed to several triggers. Like my body can’t handle all the problems at once.

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    1. Jak Post author

      Hi Wendy

      Sorry to hear you’re struggling with diagnosis, it’s very common unfortunately as MCAD is a newly emerging disease which most doctors know nothing about. Testing has to be very precise, with urine being kept chilled *at all times* so unless the doctor is doing the protocol correctly your results won’t be accurate.

      As far as I know, allergy shots will make no difference in MCAD, as mast cell disease is not an IgA, IgE or IgG reaction so not an actual ‘allergy’.

      I don’t have white bumps on my hands but if they are hives they will look a bit like nettle rash and will be very itchy. If they don’t itch I’d be looking for another explanation – EDS can cause all sorts of lumps and bumps.

      I don’t know if you’ve seen the toolkit for GPs on EDS but it’s worth a read – there is a section on MCAD and POTS https://mastcellblog.wordpress.com/links/link/

      Good luck!
      Jak x

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  21. Mary Anne McAdams

    Haven’t read all this – but those look like my hands! (dirt under nails from gardening and all!) Have the bumps! I had struggles writing – and used a support on my pencil initially. I read many posts. I have only at 53 been diagnosed with hypermobile EDS. This is a tough one – hard to type tonight – don’t need to tell you! There is so much to learn – and so little time! I was getting gel polish manicures and it helped my nails grow/strengthen. My dermatologist said the UV light was harmful because the nail bed had no protection, but it’s worth the price. I always say it’s medically necessary!

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  22. Dana Bolton

    Wow! Really glad I stumbled on this page. I was searching for info on the mystery lumps appearing on my left hand. (I’m left handed). This is totally me! I’ve never been diagnosed with EDS but hypermobility. My hands look just the same. My hips and ankles are the worst. Never thought this is why my hands look like my 80 year old fathers’.
    And the nails! Mine too! All the buckets of vits and minerals never helped.
    This is awesome. Because it just means I am ‘nornal’ So to speak. As far as hypermobility goes. I’ve never had any idea how it really effects my body. I’ve just always lived with it.

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    1. Jak Post author

      It’s great isn’t it Dana to finally find other people who have the same symptoms as you – makes you feel less like a freak and less alone. So pleased you’ve found this post helpful. Jak x

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  23. loopink

    I happened across your blog when reading up on newly emerging lumps on my thumb joints (nearest the tip) a year after getting them on my toes. Your comments have blown me away as your hands, your thin skin, your veins, your bendy back fingers, your lack of half moons, your ridged nails, your inability to grow long nails….SNAP! It’s been like reading a message from an identical twin! I shall go forth an research EDS, having never heard of it before! Thank you!

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    1. Jak Post author

      So glad you’ve found my hand photos useful – it’s always a relief when you find other weird people like you! 😉 Jak x

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