ME (cfs). Not hEDS

[Danlos166]

My daughter saw a different rheumatologist today. She said symptoms sounded more like ME then hEDS even though I showed her a chart showing symptoms. She said there is no treatment for hEDS. I know some of the symptoms overlap but I want to be sure we have the right diagnosis. Has anyone else been told this ? Thank you

[Jay66]

What are your daughter's symptoms?

Is is very common for hEDS to be misdiagnosed as cfs/ME and fibro. My doctors tried to diagnose me with stress/depression, anaemia and hysteria at different times.

[Danlos166 in reply to Jay66]

Migraines, sublications, ibs, urine infections, bladder problems, joint pain mainly hips but she has spent 90% time in bed in the last year. Fatigue, constant nausea and now in last 6 weeks permanent double vision from eye squint. She has successfully switched off bad eye for years but now it has returned. I know many of the symptoms are the same. I’m just worried as when she had endoscopy last week they gave 2 lots sedation and throat spray and she was still wide awake. I have read that people with hEDS can be resistant to anaesthetic and what will happen when they operate on her eyes if she has the wrong diagnosis?

[Danlos166 in reply to Danlos166]

She also has low vit d levels and has lost 3 kg in the last year.

[Jay66 in reply to Danlos166]

Resistance to anaesthetics is very common in hEDS. I have strong resistance, but not everyone with hEDS does, and it varies in extent. To me, the symptoms you list, especially the hip joint pain, sounds just like my hEDS. I have all that except eye problems. If I were you, I would encourage all her medical professionals to keep an open mind about her diagnosis, at the very least.

The resistance which hEDS gives you is only to local-style anaesthetics and epidurals, not to either general anaesthetics or sedatives, usually. You don't say if her eye operation will be done with a general (which would be ok) or a local style of anaesthetic.

I have had several medical procedures done where the local anaesthetic or epidural either did not work or wore off very quickly - long before the procedure was completed. If the eye op will be done under a local or a nerve block, then I would give the drs involved a heads up that she is likely to have anaesthetic resistance, and they should have back ups available to use if necessary, and they ought to take extra care with making sure she is numb.

We often have low vit D too - it is not really a surprise though as most people in the UK don't have enough because there is just not enough sunshine in the winter for a normal person to get the minimum amount of vit D they need. NHS advice is for everybody in the UK to take vitamin D supplements.

[Danlos166 in reply to Jay66]

Thank you Jay66 I will make a note of your comments and take them to next eye appointment when they will discuss the surgery. In your opinion should we be happy just to have a diagnosis in something is there any treatment you get specifically for your hEDS? As when I showed the list of Eds symptoms to rheumatologist she said there is no cure for this.

[Jay66 in reply to Danlos166]

Your rheumatologist is correct that there is no treatment for hEDS, and that they just treat whatever symptoms you present with.

However, my own feeling is that this risks conditions being overlooked or missed because they are not looking at the bigger picture.

Good luck with eye op.

[Danlos166 in reply to Jay66]

Thank you

[Saassii in reply to Danlos166]

These symptoms are concerning. Is there anything in her environment that could be worsening her condition? Is the place old? Any water leaks? Is the property set below ground level? Any visual mold in the home? Door tracks? Glass sliding doors set near carpets? Carpets that were wet at any time? Storm damage?

[Danlos166 in reply to Saassii]

Sorry for not replying earlier no there is nothing like that at home it’s all clean and dry. Thank you for your concern 😀

[alanhakim]

Dear Danlos166 (and all)

I felt I had to comment here.

The statement that there is 'no treatment for hEDS' is not correct. There are no specific treatments to 'cure' hEDS, but there are many treatments that address physical and physiological problems in hEDS. I am very aware that these do not work well for some people with hEDS, but poor response to treatment in a proportion of patients is a problem across many areas of Medicine. Also patients with hEDS are highly variable in their presenting concerns with some relatively straight forward to help, and others hugely complex, so outcomes vary too depending on the nature and severity of these concerns.

In managing hEDS we often adapt therapies that we use in the management of conditions like ME and Fibromyalgia etc. Adaptations typically take account of the joint hypermobility and instability, other tissue vulnerabilities that one would not see in primary ME / FM etc.

In addition advances in clinical research lead us to be more familiar year by year with all the other symptoms, their assessment and treatment. Again, these may be symptoms found in ME / FM / Anxiety disorders etc., but it is not so simple that one can just exchange one diagnosis for another.

Bowel symptoms for example may well present like that of irritable-bowel in hEDS, but the question is why does the person have these symptoms? There are specific mechanisms that may lead to this in hEDS that influence choice of treatment. Likewise, palpitations may well be Postural Tachycardia Syndrome (POTS) - but, again, why has this arisen? Again there may be specific treatments based on the findings in hEDS, and so on and so on throughout all the concerns we see in hEDS.

A question I often ask my colleagues by way of analogy is 'would anyone ever ignore the signs and symptoms (joints, skin, lungs, heart, kidney, nervous system, immune system, anaemia, bleeding etc.) of an inflammatory arthritis such as Systemic Lupus (SLE) and only treat the person as having ME on the basis of the fatigue and ME-like symptoms that the person also presents with?' Answer - of course not! The primary diagnosis would be SLE and the fatigue etc. a recognized complication; or at least we would accept a dual diagnosis of SLE and ME that allows us to think about the implications of both. So why is it acceptable to do this in hEDS? I do not think it is, and I see complications of all sorts be they physical, physiological, emotional, or social in clinic every week that one can relate to delays in diagnosis, or dismissal of symptoms, or dismissal the diagnosis.

So, someone with hEDS and chronic fatigue may well have very similar features to that seen in Chronic Fatigue Syndrome or ME. But the additional problems, and the adjustments to therapy that might assist in managing the hEDS means it is really important not to dismiss the hEDS by allowing another diagnosis to somehow i. 'trump' it but not explain all of the issues; ii. risk us not considering the optimal choices of treatment; and, iii. (worse still) risk us failing to consider the complications that might arise, and that might have been preventable.

Finally, with regard to anaesthetic, the literature on this relates to Local Anaesthetic and not General Anaesthetic (GA). Again, for sure, anyone regardless of their diagnosis might have an intolerance to certain medications such as GA, or an issue such as POTS that an Anaesthetist would need to be aware of, but otherwise there is no specific literature that describes poor efficacy of GAs in the majority of people with hEDS.

So what next for people told there is no treatment for hEDS? I think they have to question this comment with their doctor. They can show them my comments if they like. There is a wealth of information on all these issues that is accessible to the public and professionals alike - for example, all the review articles published in 2017 on hEDS available at ehlers-danlos.com/2017-eds-... , and all the literature on other charity websites such as EDSUK and Hypermobility.org (HMSA).

I'm keen not to invade this public space and over-medicalise this conversation. As such I do not intend to respond to comments unless someone feels I have been inaccurate in my assessment. I hope my comments are helpful and encourage all to explore this with their doctors and therapists to be confident they are receiving the right advice.

In good faith,

Dr Alan Hakim

[Danlos166 in reply to alanhakim]

Thank you Dr Hakim. The reason I do not question the doctors is because ‘what if I’m wrong’? My daughter does have hyper mobility but does she have hEDS. I have done so much research but now I’ve also looked at the symptoms for me/cfs and there is so many that overlap. I’ve also now read that you can have Pots with me/cfs. She sometimes gets what looks like blood pooling when standing but again the rheumatologist didn’t seem very interested. I just wish I could explain things in a way they took me seriously. But at least with a diagnosis of me/cfs things will be made easier for my daughter at college.

[Saassii in reply to alanhakim]

Thank you so much for your valuable input! Appreciated!!!!

[sleepingbeauty1]

It could be possible that your daughter does actually have both hEDS and ME, having both together is common as they overlap in symptoms. I’m diagnosed with ME, hEDS and Fibro. When I got told I had hEDS I the same as you questioned what I diagnosis I actually had for ages but it turned out that actually I have them all, just because symptoms overlap doesn’t mean you have one more than the other if that makes sense? Also with the intolerance to anaesthetic it’s also common for it to happen in people with M.E too. If you google it then you’ll find a lot of information about it. I hope this helps! X

[Danlos166 in reply to sleepingbeauty1]

Thank you 😊

[wishywashy]

My own personal ( bitter) experience is that if a health care professional can diagnose you with a condition that has cheap treatment options then that will be the the diagnosis of choice. If I knew 10 years ago what I know now i would have kicked up and raised hell to be heard! Do not let someone say it sounds more like xyz! Especially if there is family history of EDS. Even if there is no family history do not allow a lazy rheumatologist give a quick and easy( lazy) diagnosis. Your daughter is very lucky to have you fighting her corner. Ask to be referred to an EDS specialist, Sheffield or London.

[Danlos166]

Thank you I may just do that 😊 and thank you for taking the time reply 😊