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We want to hear from you: please tell us about your experience of the online community.

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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Comments

chiarieds

Hi @hEDgirl - welcome to the community, & wishing you a Happy New Year. I also have hEDS, so it's good to 'meet' you. Unfortunately PIP claims are taking a long time due to the pandemic, with the average being some 10 months from claim to receiving a decision. Depending where you look online, you will see varying comments about PIP claims, however the latest government statistics show that since PIP began until Oct. 2021 52% of claimants were awarded PIP.

You will of course have to wait for your decision letter, but, if that's not as you hoped, you can do a Mandatory Reconsideration, which is best put in writing, where another decision maker will look at all your evidence again. So, no need to think about appeals as yet. A Mandatory Reconsideration can take anything from 2-12 weeks however. Kindly let us know how you get on, & if advice is needed, you will find plenty of help, advice & support here.

hEDgirl

Hello. Thank you for the stats and optimistic reply. I wasn't expecting a reply so soon, being New Years day.

It's also great to "Meet" with another EDS person. Was going to say Zebra, but I want to hold on to feeling like a human a bit longer. Although, with no assistance from anyone, or agency, I feel like I just fell down a hole and became invisible.

On top of coming to the realisation that I have this, I also have to do all of my own research into my symptoms. It would have to be a condition that not many health professionals know much about, or are willing to see you unless you can afford to go private health care. But you already know that, I'm sure. It meant that I had almost no medical paperwork to show. Just a confirmation from Genetics Department confirming a clinical diagnosis of hEDS. And a letter from my GP reinforcing that I suffer from "significant symptoms".

chiarieds

Hi @hEDgirl - I think we're becoming a tad less like zebras as EDS is seen to be more common, especially the prevalent hypermobile type over the passage of years. When I first looked into it in 2000 it was said to be that 1 in 20,000 had this; 10 years later it was 1 in 10,000, & I think, perhaps, the current 1 in 5,000 may be rather too high.

I certainly have had to do my own research, as I was adopted as a baby, so no family history. I must now confess to being a long retired physio, but just as I never saw mention of EDS then, so many 'specialists' also qualified a long time ago, & may know little about it. Rheumatologists should know, & some geneticists.

As far as PIP goes, it's nothing to do with any diagnosis, but rather how your disability affects certain aspects of daily living, &/mobility. Please see the activities/descriptors that are looked at with PIP, if you haven't already done so: https://www.cambridgeshire.gov.uk/asset-library/Personal-Independence-Payment-Descriptors-and-Scores-April-2021.pdf

As far as your symptoms go, on the EDS Support group website, they have a GP's toolkit, which is worth looking into, & telling your GP about. Please see: https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx I wish I could say that everything on our EDS Support group's website is up to date, but I can't. My user name is chiarieds because my family is also affected by a neurological condition (Chiari 1 Malformation), & altho I feel it's likely only a few of those with EDS also have this, I've learnt more about EDS from some USA specialists over the past 20 years.

I have to say that I only ever saw NHS consultants, & they were many, other than seeing a couple of orthopaedists privately (& neither helped).

When I had a PIP assessment, the Health Care Professional I saw prior to the pandemic, seemed to have some understanding of EDS, but, as I said previously it's more about literally 'How your disability affects you,' so they don't need to actually understand about your disability, but how it rather affects your function.

hEDgirl

The rarely ever diagnosed EDS. Yep. My Mother died 7 years ago. She went in for a minor op and they lost her a few hours after she came out of theatre. She was never one to go to the GP, but in her last 5 years she did. The misdiagnoses would make your head spin, and would be hilarious, if it were not so serious and sad.

Many UK medical professionals just make stuff up rather than admit they are unsure, or, heaven forbid, investigate or do further tests. I was recently referred to Rheumatologists twice by my GP and physio due to inflamation. I have figured out that I have MCAS. Both have stated that since I have a diagnosis of hEDS, there is nothing they can do.

I was a Clinical Aromatherapist for 25 years. I had never heard of this condition. It was a young American Physiotherapist who had me come in, in August, after my hip x-ray had shown no real signs of Arthritis, and after a telephone assessment. Straight away she knew what was causing my inability to walk. She put me through the Beighton. I scored 9. She forwarded the data to my GP, so did my optician, that was forwarded to Genetics. Guess I am lucky to have had such a knowledgeable Physio and get a firm diagnosis. Unfortunately, my American phisio has now fled the NHS and gone to work in the private sector.

chiarieds

I'm so sorry about your Mum; there are no words to say.

Have been there with our UK 'specialists,' one rheumatologist standing up & offering me his chair as I knew more than him. It's been difficult as I lost my youngest daughter, & no-one knew what she had, & then when I found out it was likely due to Chiari 1 Malformation, no-one wanted to accept this as the cause. I was perhaps fortunate that by a bit of serendipity I was sure that Chiari 1 Malformation affected some of those with a connective tissue disorder at the same time a New York neurosurgeon was finding several of his Chiari patients also had EDS. He helped me raise awareness of Chiari 1 Malformation being associated in some of those with EDS here in the UK.

I'm pleased that a physio was able to help you, &, if I can help you further, I would in the first instance recommend that you watch Dr Anne Maitland's videos (she also has MCAS). As mentioned, I learn so much about EDS from USA specialists, who say that EDS can be a case of complex Chiari, whilst here in the UK this continues to be minimised. There really is a better understanding of EDS in the USA, & I would venture to guess our UK Drs are at least a decade behind, unfortunately. Please see one of Dr Maitland's videos here:

https://www.youtube.com/watch?v=wz1Lb2rjHag&t=17s

You will likely find out more about EDS from the American Syringomyelia & Chiari Alliance Project than anywhere else: https://asap.org/ & Dr Paolo Bolognese (the New York neurosurgeon I know) has given patient lectures on EDS there too.

hEDgirl

That is so sad. I really am so sorry for your loss. The loss of a child, or a grand child, or sibling must be so much worse than loss of a parent in their 70's.

I think I have watched that video. Maybe on the Ehlers-Danlos Society.org youtube channel. They have a lot of good presentations and seminars. I quickly noticed that the American Medics were ahead of the curve on this. Also on treatment and testing of Thyroid function. There is a DR Tina Peers has good info on MCAS, and it is showing up in Long Covid patients.

I haven't had a chance to go too deeply into Chiari Malformation yet. But I do intend to do so. I only discovered I had EDS a few months ago, and, even with the brain fog, have been ploughing through all the information. It's a lot. However, I am just so grateful that there is a large amount of information to go through all at once.

I now wonder about my son, who, (coincidentally within a day of my Physio appointment) was told he was hypermobile and that they would operate on his knee, but that it would take far longer to heal, and that there was every probability it would not be a permanent fix.

When my son was born, his breathing reflex was under developed. He would pass out while crying. Apnoea. Then at the age of 2 years, when the Consultant said he would probably grow out of it, it changed to a slightly different type where, instead of going limp, pale and passing out, he would now go stiff/rigid and turn blue before passing out. At 3 years old we found him on the bed unconscious with a large pool of blood on the pillow. The Consultant eventually said that it was a febrile convulsion. There was no fever, nor was there any convulsion.

He went on to have a few episodes like fitting/fainting. I began to wonder if he had epilepsy. However, by the time he was in primary 2, all of that seemed to stop.

hEDgirl

Teddybear12 said:

Hi @hEDgirl Welcome to the Community and Happy New Year. This is a friendly and supportive forum please join in and ask any questions you have. Take care.

Thank you very much. The last few months have been surreal and stressful. It is a relief to have a place to ask and discuss these issues around disability.

chiarieds

Thank you @hEDgirl - our youngest daughter had stridor as soon as she was born, & her left lung collapsed, which was successfully reinflated. We were later told one of her vocal cords was a 'bit tight,' then later paralysed. I couldn't believe this as we were told we'd never hear her speak, & yet she spoke clearly, so thought both of her vocal cords must be paralysed, which proved to be the case. Her Gt. Ormond St specialist remembered her some 14 years later, & agreed with the New York neurosugeon that she had likely had Chiari 1 Malformation associated with EDS.

Hmmm, tho I can't say I've ever heard it's associated, just before his 4th birthday our son had a febrile convulsion; he fitted, but didn't develop a fever until afterwards in hospital. Thankfully he hasn't had problems with this since.

It is a steep learning curve, & great you have watched Dr Anne Maitland about MCAS.....keep learning about EDS, & let me know if in any way I can help you further. My best wishes.

hEDgirl

Thank you, It is not only really good to talk to someone who also has EDS, but who has a far greater, all round knowledge of the Musculoskeletal system due to profession, but has also had much personal experience. I am glad to see people with your vast knowledge and experience on these types of forums willing to help guide others.

My experience within the field of my Clinical Aromatherapy practice was mainly in Palliative Care, specifically HIV/AIDS sector.

I am just a bit overwhelmed and exhausted these days, more so than usual. Trying to get help and assistance right now is near impossible. I will have to move home as soon as possible, as I can no longer manage the outer stairs to my flat, positively dangerous at this point. I also really need to get full mobility from PIP. At first I thought, okay, so I will need a wheelchair. A few months down the line, I now realise that my shoulder joints, especially the right shoulder, aren't fit for pushing myself around. Also, I don't think I can expend that much energy. Oh, the good old days, when, to me, PIP sounded like a cute dogs name. I am going to have to get driving lessons and a car, if I plan on going any further than a few yards.

I hope you and your family are having a good holidays.

Will speak to you again soon.

chiarieds

Hi @hEDgirl - it's really both interesting, & good, to know about the work you did in palliative care, especially for those with HIV/AIDS; quite something. I've always been most interested in neurology (just as well as it has helped with our family's later Chiari 1 Malformation concerns), & specialised in treating children with Cerebral Palsy, which is why Scope has become quite dear to my heart.

The great thing about this forum is that we can learn from one another, & I've been looking through your reference to Dr. Tina Peers here: https://www.drtinapeers.com/ I'll certainly devote some time to reading through the PDF on Long Covid shown there, so thank you for the mention of her name.

A few thoughts, depending on your housing situation, have you considered self-referring yourself for a needs assessment? Please see: https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/ An occupational therapist may be able to help in the meanwhile, & advocate for your need to move if you don't own your own home, tho this can unfortunately take a long time.

Of course I have to say this, but can you ask your GP to refer you for further physiotherapy? Great a physio helped with your diagnosis, but, with growing interest in hypermobility, physiotherapy can help. I'm testament to this, as I was told when still a physio student that I'd be in a wheelchair by the time I was 40, & 'cough' I'm a 'tad' older than that now, & altho I use elbow crutches outside, I'm not a wheelchair user. I know everyone is different, however.

If you do need a wheelchair, then there's always the option of an electric one, or perhaps a mobility scooter would maintain your independence. But first, start here: https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/walking-aids-wheelchairs-and-mobility-scooters/

My last thought, & this is only from personal experience (tho being me, I researched a lot first), I wonder if you would consider CBD (cannabidiol)? I started taking this over 3 years ago, hoping it would help with my neuropathic pain; unfortunately it didn't. Much to my surprise the lower back pain I've had since a teenager lessened dramatically. What also surprised, me over a longer period of time, was that my daily subluxations reduced in frequency. I use this, which contains CBDa which helps with pain: https://www.simply-cbd.co.uk/products/green-cbd-oil?variant=37927970963639 &, if you scroll down to the section, 'How to Use,' you will see how this ethical company recommends to start taking this. Any questions about CBD, please also let me know. The only caveat is that CBD is broken down by the same liver enzymes that break down over 95% of prescribed meds, so you should discuss this with your pharmacist/GP prior to taking this. If you do take such meds, then for safety, a 4 hour gap is recommended between taking these & CBD. The company I use now has CBD transdermal patches, which can however be used safely: https://www.simply-cbd.co.uk/collections/cbd-patches I just started using them on Christmas Day, so watch this space!

*[Additional note from moderator]: if you are considering taking any supplements, it's important to seek advice from a medical professional who has knowledge of your health and any other medications you might be taking.

hEDgirl

Hi again Chi, Hah, I have always been interested in Psychology, and Neuroanatomy. Us EDSers seem to be a "head" bunch. Which is fortunate, because it looks like we are going to have to figure things out by ourselves.

About Tina Peers, I came across her when she was interviewed on YT by a channel called RUN DMC/Dr Mezinger. He is one of many doctors suffering from Long Covid. He interviews other doctors who either have, or are treating/researching Long Covid. The similarities with her patients with Long Covid and EDS associated symptoms is interesting. She does state that these patients did have a background of, for example Allergies, etc. I have had exhaustion and fatigue for a long time. and 3 years ago, I developed allergies, I now have to always be on anti histamines, or my body reacts within a day of missing my anti histamines. Every time I asked my GP to check my Thyroid, it would always come back normal. He would say "Everythings fine" as though I was imagining things, or suggest anti depressants. He interpreted exhaustion and aches as depression. So I find the connection very interesting.

2 years ago I had what seems, pretty much to have been Covid. In fact, when I submitted my application to PIP, I was sure what I had Arthritis and Long Covid. I now realise that Covid/or whatever I had knocked the living daylight out of me and pushed the EDS into overdrive. I could hardly breath, the cough was nasty painful. I thought I might die in my sleep. I was delirious. I had no sense of smell and was a wreck for what seemed like months. I was trying to make face lotions and goatsmilk soap for Xmas presents, working with sizable amounts of essential oils, (that is once I managed to get to a stage where I could actually get up and dressed), but could not smell anything. I even got pinkeye at the tail end of it.

In light of discovering that I have EDS, which seems to be progressing at a rate of knots, I do wonder if more peoples genetic weaknesses will now have been brought to the fore? All this sudden talk of MCAS, POTS etc. It may help in educating many Physicians on these conditions. What is your, far more educated take on Dr Peers findings?

With regard to Pain Meds. When working within both Palliative sector and privately, the amount of clients who had wrecked their gut and stressed other organs with the use of pain killers was huge. I have never been into meds, drugs or alcohol. It just wipes me out. My Mum and my daughter are the same. The males, my Father, brother and Son all have very high thresholds.

I started off saying I don't want to take pain meds, I thought I would try to manage with Magnesium oil, and a TENS machine.... LOL. Or try Prolotherapy. The lack of sleep and pain really got to me, and my GP suggested I give Amitriptyline a shot. Bad idea. I felt stunned, and so zombied that I was concerned about even going out. Also, I think it caused an allergic reaction, made me itchy to the point where I couldn't sleep because of itching rather than pain in my joints. Also I did not like the fact that you were to take it continuously. So, am now trying Gabapentin. I wish it came in tablet form, so I could take half, and work up. Best sleep I have had in years. However, I have a problem when the pain killers help me to walk for longer than a few mins, and faster than a snails pace, my muscles become quite erratic and uncontrollable very quickly and I lose my balance.

When discussing this issue on my first, and possibly last appointment with my new Physio who kept referring to my condition as JHS, I politely corrected her a few times, so then she went on to say "you do realise I can't cure you". I really was done at that point. Politely asked her if she could possibly arrange for a referral to pain management. I couldn't think of anything I had said to cause her to think that she, or indeed anyone could cure me, The only thing she said that I agreed with was that I need to learn to pace myself. I think that possibly she resented the fact that I knew a bit more than her about hEDS.
I will follow with interest on how you get on with the CBD. Do you have any experience or know anyone with hEDS who has had positive results with Prolotherapy? Not that I can afford it, until I ever get PIP. I will look into your links. I had requested, through my GP, an OT assessment, however, they wont come out until I have been rehoused.

This has taken hours to type, as my right shoulder is pretty weak and painful.

Tori_Scope

Hi @chiarieds

We've edited a disclaimer to your comment reiterating your message for members to check with a medical professional before taking any supplements to ensure they're suitable.

[Please note: This comment has been edited to reflect an update to moderation]

hEDgirl

@chiarieds, Sorry I did't manage to look at those CBD links last night, before they got "disappeared".

You are very thoughtful and professional in your approach. I should know, I work with medicines, Essential Oils. I am an AOC approved MGCP Clinical Aromatherapist. Qualified to work in Clinical settings.

)

I really do appreciate you trying to give me links, and your experiences of a product. Especially pointing out that CBD can have an effect on meds. Right now I am going to have to look at supports. Shoulder, wrist and thumbs.

Are you on any of the EDS facebook groups? Or is there a way to DM you here?

chiarieds

I shall send you a PM when I simmer down. I have resisted sending PMs about CBD previously as others sometimes read posts, & I hope the info I give may help other people if I posted publicly.

hEDgirl

@poppy123456 That is exactly what I was thinking. I am new to this forum. I am usually a private person, don't really do social media et.c & FB, except now that I need to for the EDS support group.

ANY helpful information, especially from a Professional, a Physio, with personal experience of Ehlers-Danlos Hypermobile Type, was like finding a pot of gold. @chiarieds is so on point, specific, and really helpful at this particular time when I have just about reached my limits, emotionally, cognitively, and physically. This is why I signed up to SCOPE.

And although my comments/replies are probably a bit long and somewhat rambling, I was aware that some future me will come along when they are at the point where I find myself now, just being diagnosed and physically falling apart, with no, or very little intervention or support due to covid restrictions, the NHS not being able to offer much help, and no finances to turn to private sector, and find some interesting and helpful information there in the form of the input supplied by @chiarieds.

Lisatho11987777

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

Lisatho11987777

Thats just a few examples

chiarieds

Thank you both for your kind comments. When I asked the pharmacist attached to our GP's surgery about the medication I take 3+ years ago (altho I knew it wasn't broken down by the group of liver enzymes known as cytochrome P450), she said I was the first person who had asked about CBD. However, she was kind enough to check it out for me without any qualms.

The NHS website describes CBD as a food supplement: https://www.nhs.uk/conditions/medical-cannabis/ They say,

''Some products that might claim to be medical cannabis, such as "CBD oil" or hemp oil, are available to buy legally as food supplements from health stores. But there's no guarantee these are of good quality or provide any health benefits.''

This indicates the difficulty of where to buy a lab certified product.

The Food Standard Agency here: https://www.food.gov.uk/safety-hygiene/cannabidiol-cbd also states that,

''CBD extracts are being sold as a food and as food supplements in the UK. They are widely available in shops, cafés and for sale online.

CBD sold as food, or as a food supplement, includes:

oils
drops or tinctures
gel capsules
sweets and confectionery
bread and other bakery products
drinks ''

chiarieds

I did not mention the 'possible medicinal benefits of CBD products.' You unfortunately miss the point, that most prescribed meds are broken down in the liver by a group if enzymes called cytochrome P450 that also break down CBD. Without initially going into this detail, I just said that a x hour gap was recommended. You can take CBD with other meds, but in many cases a gap between taking each is all that's needed; you would think I had no knowledge about such drug interactions, & tbh the info on the NHS site is in places incorrect, e.g. about CBD affecting how your liver works: https://cfah.org/cbd-and-liver/ this was about a study of a high dosage CBD in some mice who were given dosages by comparison higher than a human would ever take. The actual study here:

https://pdfs.semanticscholar.org/78d1/b11ef6ea5fc856430750a413b968e1372207.pdf

You would also think from what you now say that I hadn't said to discuss CBD with a pharmacist/GP, tho you relied on this previously.

CBD must contain less than 0.3% THC to be sold as a food supplement in the UK, so THC isn't relevant.

I would also ask, as I mentioned, why can give links to aids (which have to be paid for), but not where to buy reasonably priced CBD from an ethical company? So many people buy ridiculously priced CBD, which many can ill afford, or too strong a CBD (then wonder why it doesn't help them). I think a little discretion around allowing a link to help people might be allowed, as it always has been previously.

I certainly will continue to talk with @hEDgirl whom it's a pleasure to talk with.