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Ehlers-Danlos Support UK
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20 years old and Am having a horrible time

I’ve known and have been diagnosed with EDS sense I was a child not having it bother me much my whole life. 3 months ago I started to get every sick with not being able to eat and drink without throwing up I’m now down to 116 and am fighting to literally stay alive it feels like I’m thinking it’s MAST CELL reaction but there’s no way to prove that .. in the mean time all of a sudden I’m having numbness and tingling in my arms and hands and served kneck pain . Now starting last week I’m having a horrible headache along with sensitive to light and sounds and more nausea witch i think is a possible CFS leak because my symptoms match it to a T. I have an appointment with some specialist coming up in November but was wondering if anyone had similar story’s or advice on the MCAD or what else I can do in the mean time because all I can do is lay in bed in pain and try not to throw up what I’ve eaten 😕🤮 thanks in advance

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Hi Jmeds3 😊🌸🌿🦋

I’m sooo sorry you are suffering so much sweetie.

I also have EDS since birth. I understand the problems so much more as it has really progressed in my adulthood.

I just researched your MCAD on a world renowned clinic site known for excellence in diagnostics and care. You can go to

mayoclinic.org and read upon your condition.

From what I understand it is life threatening. If you cannot keep anything down you need an IV treatment. You should go to the ER in the USA 🇺🇸 or A & E if in the UK 🇬🇧 if your sugar drops too low you can go comatose.

Please let us know how you are doing. I just prayed for you sweetie.

Take care and abundant blessings dear.

Hug 🤗 love 💗 and kisses 😘

😊🌸🌿🦋🙏

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Thanks so much for the reply it helps knowing someone one is there and that I’m not so alone 💕 I’ll keep you updated and keep praying please 🙏

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You’re welcome dear.

I appreciate your updates and chats about them.

Are you doing any better, keeping any food down???

Have you contacted any doctor yet??

Xxx

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I'm so sorry for what you're going through, someone should be looking after you, what does your GP or primary care doctor say about your weight loss and inability to eat!!

Regardless of all other symptoms, this must be dealt with immediately.

I have vomited violently, so violently that I brought up the contents of the first part of my small intestine. I was unable to eat due or keep anything down due to having bowel paresis, where my bowel had just become paralysed and stopped working and so anything I tried to eat my stomach rejected it, violently! This can happen with EDS because our bowel muscles are weak and can become paralysed.

I was rushed to A&E in an ambulance because my GP suspected I had a bowel obstruction, which can be life threatening. An xray revealed that my entire colon and small intestine were feacally loaded, so entirely full up of waste material and therefore my body started vomiting because any food I ate had nowhere to go.

Sorry for the intimate question but are you passing any bowel movements?

This is really important to know, incase your symptoms are being caused by your digestive system being paralysed and unable to move food thru to your intestines.

Are you able to keep down liquid?

If so can you try drinking some dioralite, the rehydration drink you should drink after having sickness and diarrhea, to replace your salts, sugars and electrolytes as well as lost fluid.

This is incredibly important because if you are severely dehydrated and your electrolytes are out of balance, you can experience some of the symptoms you are describing, like numbness and tingling.

When you become severely dehydrated and your electrolytes are out of balance, you will also become extremely nauseous and then when you try to eat anything, you end up vomiting!!

The more dehydrated you become the more nauseated you will be and then you will be unable to eat food because it makes you so sick.

I'm not saying that your symptoms are not related to mast cell however if you have lost so much weight and are unable to keep food down and if you are also dehydrated and your electrolytes, salts, sugars etc are all low and imbalanced, then you will become seriously unwell!!

I know this because it has happened to me, it can be very dangerous but can be rectified by drinking some dioralite, or Ensure or Complan replacement meal drinks and by also drinking plenty of water.

This will may not solve the problem as to why you are unable to eat and are vomiting your food but it will definitely make you feel better.

Please can you answer the questions above, to help me to help you. Hang in there, Claire

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Sorry for the late reply have been in and out of the hospital for the last couple of days. My GP is of absolutely no help and am in the process of getting a new doctor to see me this coming week . I’m able to pass little amounts of bowel (probably TMI ) but I had to literally use a glove and pull my own bowl out of my body because I had no other way of getting it out. I have asked my GP for a scope and an x ray and she denied my orders. I collapsed And was sent to the er to get fluids. I’m barely able to keep water down and everything feels likes it’s just sitting in my stomach and isn’t actually going anywhere seems to just sit in my stomach and not go anywhere and I feel like I have no bowl muscles to push anything out . I’m going to get more iv fluids tomorrow at the hospital my primary care doctor is acting like I’m completely crazy she says my body is in starvation mode but won’t do anything or any testing to see what’s going on .

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Omg, what is wrong with your primary care doctor!! Does she know that you have had the manually evacuate your bowels? This alone should tell her that something is wrong wrong! You need to have an xray at the very least!

Can you perhaps explain to to your doctor that people can die from a bowel blockage and with your vomiting and inability to have a normal bowel movement, she needs to check that you don't have a blockage.

Why have the ER not done an xray, you may well have a bowel blockage or partial blockage and if you are having to manually evacuate your own bowel movements then you could also be very badly constipated, like what happened to me after my bowels froze and so your food has absolutely nowhere to go.

Does your doctor know anything about EDS and its affect on the digestive system and bowels? Can you ask her to look up EDS and bowel paresis? (I may not have spelt that correctly but it's basically when the bowels, or part of the bowels are paralysed.)

Have you tried taking any laxatives? If not then I would suggest something like Laxido, which is an osmotic and pulls water into your bowel to soften the poo, which if your bowel muscles are weak or not working well, will make it easier for everything to move along.

I had to take large amounts of this laxative and drink loads of water and eventually my bowels began to clear. I wasn't able to eat properly for a while but I had liquid meal replacement drinks and then soup and then gradually introduced more solid but easy to digest food. It took me several months to recover but I can eat normally now but I still take laxitives every day because my digestion and bowels will always be weak, due to my EDS.

Ask your doctor to look up the EDS rheumatologist Dr Alan Hakim, at St John's and St Elizabeth's Hospital in London. He is my EDS rheumatologist and would be absolutely appalled that your doctor is not taking this seriously!

I will be thinking of you, please keep us posted on how your doing.

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Those with EDS are susceptible to MCAS.... Those with EDS & MCAS are intensely susceptible to microbial contamination. Do you have any mold in your home? A pipe leaking behind a wall? Carpets that were wet? Some type of water intrusion?

To get yourself a quick and definitive answer, move out of your home for at least a few weeks and see if your health starts to improve. If it does then you know to get an expert in to locate the problem if you haven't already.

I was having symptoms sneaking up on me that were all mast cell activation, but then suddenly everything escalated to life threatening, the symptoms sounded similar to what you're describing. Have you had any small red spots appear on your chest, trunk, or somewhere on body? Have you had any discomfort in the mucosal areas such as mouth, nose, ears, eyes? Any burning or itching?

I'm so sorry for your fear and difficulties, may God help you and bring you light about this.

Loves and hugs

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Yes actually awhile before I got very I’ll my eyes were itchy and red and I would take Benadryl and I do have red spots on my chest and had come off and on my neck how can I tell if this is Associated with what you are talking about does it cause GI issuses like vomiting and everything thing else , is there a medication to help

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I’d like to send a picture of the spots on my chest but am unsure on how to do so on here thanks for the help!

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Do they just look like little red blood spots? Like red freckles?

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Yes definitely causes things like GI vomiting etc

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Have a read of this, see if you note many symptoms. Current exposure produces symptoms listed in this paper. MCAS once sensitized is the ongoing result of such an exposure in those genetically susceptible. So a separate list of symptoms continue once affected but no longer being exposed. You just need to figure out which one you are...

mycotoxicosis.blogspot.com/...

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