April 7, 2015 at 8:17 am #817
Since 2 month now, I met a very nice girls, maybe one of the nicest I ever met since and she told me the first day she have Elhers Danlos type 3 Syndrome (She talk me about level 8 also but another kind of measure, I miss the name, sorry).
We live in Belgium and are french speaking, so sorry if I make spelling mistakes or miss some vocabulary.
Since one month now, she are unable to walk correctly, walking like she have no joint or not enough muscle to keep her straight. But she have a wonderful force.
She have visit to hospital recently, it’s quite difficult for her as she have 3 childrens and is alone whith them. And she is not the kind of people asking for help.
I’ve urged her to take action and ask for support in hospital, but there, they alsway takl about psychiatric hospitalisation and do no seem to understand what is Elhers Danlos.
She actually use morphine, but even with this, pain is still very present. She always joking about cutting her legs. But I can understand that she is in terrible pain and she is not pretending.
This 16 april, we have a meeting with doctor in a city in other part of our country, but specialised in genetic. I don’t kown if new testing can be realised there or if they have new possibilities for her, I keep my finger crossed.
Do you recommand some special testing there ?
I’ve read some information about MTHFR on this web site, but I do not have sufficient english knowledge to understand everything http://www.mthfrheds.com/
I’ve read also that pain can be produce by intracranial pressure ? Or I missread something ?
Do you have any advice for her, what sort of medecine could help her to avoid the pain and can walk normaly again ? Is there something out there that can be usefull for her ?
I advice her to take Branched chain amino acid in order to help muscle fortification, glucosamine and chondroitine in order to help her join (I use this for sport) and she use L-Carnitine.
Do we have to test her Testosterone and oestrogen level ? I know she told me that she have regulary high prolactin level and this is usually the case when oestrogen is very high, I’m correct ?
I know also that Human grow hormone help to produce more collagen. Is there a problem in the quantity of collagen produced for EDS patient or quality ?
I’ve read, for exemple, that Peptide IPAMORELIN, provoque the pituitary gland to produce more HGH and level up the IGF-1 (Insuline growth factor) without level up prolactine and cortisol level. Do you have any idea if it’s a good idea to level up the Human growth hormone for EDS patient ? I’ve read that some testing were made by injectin synthetic Human growth hormone on EDS candidate in the past, but never read any result anywhere.
I’m very sorry to be so long maybe. I’m quite new in EDS and discover how far it goes.
My goal is to help my Girlfriend being well in her body, and it’s still difficult for me to believe that there is no solution for her.
Thanks in advance for your help.
ChristopheApril 8, 2015 at 1:17 am #5419ChloethomasParticipant
It’s a chronic illness, which means there’s no cure, but that doesn’t mean her quality of life can’t be improved — it certainly can!
Buy the Dr.Tinkle book on EDS Hypermobility for more information.
Pain is very individual – but TENS machines, heat packs, anti-inflammatory foods, rest & relaxation, meditation for chronic pain can all be used in conjunction with stronger medication.
Don’t bother talking to psychiatrists about Ehlers Danlos. Use them for mental / emotional support with anxiety, depression, chronic pain. And find a doctor who specialises in connective tissue diseases in your area – they can refer you to support groups, and other professionals to add to her “team”
Oh also also — BEST. BOYFRIEND. EVER.
Sending you my bestApril 8, 2015 at 8:26 am #5420
Yes, I know that there is no way actually to get rid of this Illness definitely. Of course, it’s quite difficult for me to have a complete view of this and I’m maybe too newly informed about EDS to accept that fact.
I purchased the book yesterday and have started to read it. My girlfriend do not speak English at all, so I will have to translate it for her or read her the most important part.
I think the part at page 89 (What Can be Done for Patients Suffering Today?) will be usefull for her next visit at hospital and will ask to doctors to read that part too and maybe do the necessary analysis.
TENS machines are a kind of electic stimulation for muscles right ?
I followed a mindfullness meditation 6 month ago. Do you have any experiences with mindfullness for pain management ?
In Belgium, we have a specialist, Dr Manicourt in Brussel who know well this syndrome, but he will stop working soon as he’s getting old and as it seem, there is no replacement for his position.
So it’s quite difficult to find a good specialist. they are rare and overbooked usually.
But in our nearest hospital, they usually never heard anything about EDS.
My GF had a appointment with a physiotherapists this morning. I printed for her a document with some good method for EDS patient and finally, my GF told me she had to cycle a little and she feel the pain terribly right now. Of course, she have to workout lightly in order to rebuild muscles, but I think cycling at this level is too hard for her.
Starting with exercice in a swimming pool is, I think more affordable for her.
But regarding her next hospital visit, and speaking to a newbie. What will you recommand me to do, to ask, and to start with for her. Is there a best method to improve her wellnessg ?
I will try to do my best and be there for her. It’s not easy as I’m a quite active man, doing lot of sports, diving, cycling hiking … and as it seem, sharing those activities with her will never be possible. Quite difficult to start a relation knowing that. but she deserve to be loved and she have a wonderfull personality (I’m 41 Yo and she’s 32, by the way)
ChristopheApril 8, 2015 at 9:18 am #5421
I’ve read that eds patient can use Zyrtec and Zantac. For wich king of symptom this combo should be used ? Could you explain me briefly the positive effect of this combo ? Is it valid for Type 3 also ?
She told me that she have all the symptom of pots. Should I recommand her to give a try to this ?
Is there any dosage recommandation ?
ChristopheApril 13, 2015 at 1:59 pm #5425Dr. DianaKeymaster
Hi Christophe, Zantac/Zyrtec can be very helpful in many cases of POTS and helps with difficulty standing and some feelings of weakness. It blocks histamine, which can dilate the vessels and contribute to symptoms of POTS. Most folks use a “double dose” (just double whatever the label says!). As far as human growth hormone, it may be worth it to check her current levels (IGF-1) to see if she has room to go up, if that makes any sense. HGH can help us maintain strong bones which can be helpful, especially for women. I hope that helps! 😉April 13, 2015 at 4:11 pm #5426
thanks for your response Diana !
I asked her to purchase some and she will probably get boxes tomorrow.
I hope it will help her to feel less tired.
That’s great ! As we have appointment with university hospital, I will ask them if they can check her level.
Question regarding HGH. I know that a good level of HGH have a major role in muscle growth and of course in collagen production.
Do you think HGH can improve repair of connective tissue also ? Or the resulting collagen will be responsible for for future disorder ? (I hope I’m clear enough)
Thnaks and have a good day !
ChristopheApril 13, 2015 at 4:31 pm #5427Dr. DianaKeymaster
I don’t think anyone knows if increasing growth hormone levels will help us with our collagen. Gut instinct tells me that if we have a genetic defect in collagen production, growth hormone likely wouldn’t help the structure of our collagen, wouldn’t you think? (This begs the ultimate question — does she have a genetic defect in collagen?). Because it CAN help with osteoporosis, however, if her levels are low, that may be worth exploring. I’ve always tried to keep my levels on the upper end of normal. 😉April 14, 2015 at 4:02 am #5428
yes, exactly ! I’ve looking if there was any response to such a question. Is this is a disorder during collagen production or an abnormal alteration of a “normal” collagen.
I hope that future check she will do soon will show more precious information.
I will ask to the hospital if a threatment can be used here in belgium. She told me that a doctor told her it was too late to use HGH for her, and I don’t agree at all.
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