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Hi, my name is hEDgirl!

hEDgirl

Recently diagnosed with Ehlers-Danlos Syndrome, Hypermobile Type.

I finally had a face to face assessment with PIP 2 weeks ago. It has been almost 7 months since I requested the form up to this point.

I was advised by the assessor that I should hear from them regarding a decision by the end of January, to mid Feb, 2022.

I am not filled with much confidence of a good outcome from what I am seeing online. I know that CAB is stretched to their limits.

Anyone here have any recent experience of length of time for appeals?

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hEDgirl

@lisathomas50 Thanks for the input. I do tend to try to incorporate iodine and zinc into my diet as much as possible. Also some supplements. However I am going to have to review my diet completely and try to work with a low histamine diet. I am coming to realise that the MCAS is playing a large role in my symptoms and lack of energy due to inflammation.

Lisatho11987777

@hEDgirl your welcome it must be very difficult for you but when it comes to your health and welbring always seek specialist help a pharmacist can help with most information things we think are harmless can cause alot of problems and what works for someone else may not work for us

Hope you get the help you need

Sandy_123

chiarieds said:

the info on the NHS site is in places incorrect,

@chiarieds are you implying that the NHS website gives false information? I hope not that's where alot of us get our info from.

@hEDgirl welcome to the forum, I think it's probably best to seek advice from your gp, as they know your history.

Lisatho11987777

@Sandy_123 those were my thoughts as scope say its trusted information and I would hope that information on the NHS website is correct maybe scope can clarify this

chiarieds

lisathomas50 said:

CBD has side affects and can affect medication fruit isn't a medication but fruit can affect medication and the dr will tell you or you can ask a pharmacist for advice about CBD and the affects it can have

It's mainly grapefruit & closely related citrus fruit that are metabolised in the liver by cytochrome P450, hence the warnings about taking CBD at the same time as this, & also medications where there's a contra-indication to taking grapefruit/grapefruit juice.

A study about grapefruit & some medications was first published in Canada in 1991; the lead author, David Bailey, published further in 2013, then finding 85 medications that interact with grapefruit. Please see: https://www.cmaj.ca/content/185/4/309

The list of medications that shouldn't be taken at the same time, as you intimate is not exhaustive. Please let me know if you would like to see the medications currently known to interact with cytochrome P450. May I stress there's a difference in medications which 'should not be taken with CBD,' i.e. at the same time, & those where, from my understanding, a x hour gap would negate potential adverse reactions.

As ever, I recommend anyone considering taking CBD to discuss this with their pharmacist/GP.

chiarieds

As to the NHS site, in this instance about CBD affecting how your liver works, whist I always give the caveat that taking CBD should be discussed with a person's pharmacist or GP, in this case this NHS comment is misleading if you care to read the links I gave, which refute this. Honestly, gasp horror, there's info on the government's website that's incorrect/out of date too.

I think the trouble is that as yet we don't know everything about CBD, & there's certainly some mis-information about this on the internet. I look forward to when hopefully NICE look into it more. Of course if either @lisathomas50 or @Sandy_123 can provide reputable links to prove me wrong, now's the time to do so.

hEDgirl

lisathomas50 said:

@hEDgirl your welcome it must be very difficult for you but when it comes to your health and welbring always seek specialist help a pharmacist can help with most information things we think are harmless can cause alot of problems and what works for someone else may not work for us

Hope you get the help you need

Thank you for your concern.

Indeed, I got a lot of very useful, helpful and professionally presented advice from a qualified Physiotherapist with hEDS, the same condition that I have. @chiarieds. So, for that, I was very grateful.

Also, in case you missed it, I have mentioned my credentials in earlier posts. I am fully qualified in a clinical setting, I also have family and friends who are Doctors, homeopathic nurses, Pharmacists and Dentists.

However, I am fully aware that most, like yourself, do not have any kind of medical training, and therefore should seek advice from a medical professional.

hEDgirl

@chiarieds Thank you so much for your advice, time and energy. I just thought I would let you know that I have just purchased 10mls of the Green at 2.5%, and The 30mls of Gold with Turmeric and Black Pepper at 2%. I was tempted by the Turmeric and B Pepper due to the histamine lowering properties of both these spices. I also very much like the fact that this company have a K9 charity.

Money is so tight at the moment, having to buy different, more appropriate shoes, Jacket, bedding, Physio tape, mattress, and still no pip decision. I didn't want to throw money at CBD and it not be the correct one. The information on their site is excellent, and professionally laid out.

So, thank you once again. My next ask will probably be related to supports/braces. I hope that isn't another mine field of a topic. Haha.

poppy123456

There's a very interesting link here regarding taking other medication at the same time as CBD. https://cfah.org/cbd-drug-interactions/ definitely worth spending 10 minutes of your time to read this, it mentions various studies taken between different medication and CBD and the findings of those studies.

@chiarieds thank you also for posting those links, which i did take the time to read. Very interesting and gave me some extra knowledge that i didn't know.

Sandy_123

chiarieds said:

As to the NHS site,
I think the trouble is that as yet we don't know everything about CBD, & there's certainly some mis-information about this on the internet. I look forward to when hopefully NICE look into it more. Of course if either @lisathomas50 or @Sandy_123 can provide reputable links to prove me wrong, now's the time to do so.

@chiarieds I really don't know what links you want me to post to you? I merely mentioned that you said the NHS website being wrong.
Alot of us use that NHS site, myself included.
I've not come across anything out of sorts personally.

Also this post is going way of topic to original posters post. Which I don't find helpful to them.
I certainly wo t be posting any links.

chiarieds

I don't feel the OP feels this has gone off topic, as she has purchased some CBD. I was just saying in this instance some of the NHS info on CBD was incorrect @Sandy_123 I didn't imply that all the info was incorrect on the NHS website by any means. I usually consider it a reputable source, but there are others. I rely upon medical info, e.g. the Lancet, the BMJ & also medical databases such as PubMed.

I am willing, however, to stand corrected, which is why I invited any reputable links to refute what I've mentioned. It's OK if you don't have any links.

hEDgirl

Hi again @charieds I don't feel the thread has gone off topic. It's just that I didn't appreciate one of the other members constant reiteration of ridiculously moot points. in completely irrelevant one liner posts. It's exhausted me.

It would be great to start another thread based on hEDS at some point soonish, only if you are up for it of course. Ahem, only next time I will foreword it to clearly state that I would prefer posts relevant to the topics surrounding EDS. Not one liners like we have unfortunately seen today.

I look forward to your, or anyone's thoughts on MCAS and Dr Tina Peers and the Long Covid similar symptoms.

hEDgirl

@Teddybear12 Hello, I almost missed your post.

Meh, just one or two unproductive posts, It does, I think, actually have a lot of useful and relevant information for someone just starting the process of diagnosis of such a rare and poorly understood Syndrome as Ehlers-Danlos Syndromes.

For any of you who are not aware, It is a very complex disease, (set of syndromes). Many, medical professionals do not have much understanding, nor have they had experience of it, especially here in the UK. US seems to be 10 years ahead of us in understanding and treatment availability.

It is quite isolating due to the lack of understanding from the medical profession in general. Then, there is the realisation of signs that your loved family members have it also. That you have passed it on to your children. That you can no longer take walking for granted. When you used to be a ballet dancer and Gymnast, now you don't know if your shoulder, or ankle, or hip can be relied upon today, or tomorrow. You waken up feeling like you have been beat up with a baseball bat, in pain and exhausted. You realise how some family member just died, for no apparent reason. You wonder who's next.

It is a formidable condition to have. There are however other formidable conditions. I don't want sympathy, just open discussion and helpful advice. My husband died. Diagnosed at a young age with Mitochondrial disease, a rare genetic condition. My kids were baby & toddler at the time.
There were no groups or forums to discuss and get information back then, unlike now. I think we should all be grateful to have somewhere online to turn to, not take it for granted or use it in a petty manner.

chiarieds

Please feel most welcome to start another post about about hEDS @hEDgirl - I'm so sorry, as you know, that it's ended up like this.

@teddybear12 - I hope you know me well enough by now, that I would never, ever, knowingly mis-inform another, especially someone who has the hypermobile type of Ehlers-Danlos Syndrome (hEDS) such as I. I have only tried to help. It is indeed sad that it's degenerated into this.

I'm happy to look into the info @hEDSgirl has provided, as, as I've previously mentioned, we learn from each other; it truly is a pleasure to discuss hEDS with a like-minded individual.

hEDgirl

I am so sorry @Teddybear12 I can take anything thrown my way. But my kids, Grand kids, baby brother, well, that would crush me.

It is good to meet you. Thank you for understanding my stance on EDS. Thank you for opening up and sharing your circumstances.

@chiarieds I'm never going to learn to spell that name of yours without having to look it up.

Happy New Year everyone.

chiarieds

@Teddybear12 is a lovely person, & always shows such great empathy. We've both lost a daughter; I can't say which is worse losing a 23 month old child, or having the privilege of getting to know your child as a young adult, then losing them; I think the latter.

@hEDgirl - think of Chiari (short for Chiari 1 Malformation) followed by eds (short for Ehlers-Danlos Syndrome). My best wishes to you both, & hugs.

Adrian_Scope

A very warm welcome to the community @hEDgirl. I'm glad you've found some of this discussion helpful and I hope the arguments haven't put you off posting in future.

We've edited and removed a number of comments from this discussion, either for misleading information or for the breaching house rules.

Since the discussion seems to have run its course for now, we have made the decision to keep it closed, but strongly encourage more conversation elsewhere and hope this doesn't discourage anyone's future participation.