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      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team

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trekster   

hello folks

 

I've recently been diagnosed with HMS. I've got access to a physio in my area and go to one of the 'bendy' meets

once a month.

 

Was wondering if anyone else here had to drastically change their lifestyle after discovering they had ASD

and HMS?

 

off to do my physio before bed.

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Lynden   

My son has generalised HMS (hypermobility syndrome) and moderate (used to be severe) hypotonia.

 

He was diagnosed with both from a very young age. They obviously can occur outside of ASD but is a fairly common co-morbid. We haven't had to make any changes as such but they do affect him quite significantly. He didn't walk until he was 3, has poor posture and gait and tires really quickly. In terms of gross motor skills his balance isn't great but it's improving all the time. He can walk independently, but will tire/become unstable once he tires if he's walked too far. He will also get really sore knees. His ankles are particularly bad so he is in piedro stability boots and is likely to be in them for quite some time. On top of the boots he has metal insoles to stop him toe walking and other insoles for support. His core muscles are quite weak so he has stands with his hips pushed forward so we need to keep an eye that he doesn't develop curviture of the spine.

 

In terms of fine motor skills he couldn't use cutlery till he was gone 7. Still doesn't have the strength in his hands to push the fork through food. When he tries to push buttons that are quite stiff his fingers just bend right back. He can't use a pencil/pen/scissors or anything like that yet. He is getting OT specifically to help with this at the moment because he does actually want to write, he just physically can't. Same with using a white board etc, he can use touch screens on things like his ipad, but doesn't have the strength to drag from one side of a whiteboard to the other.

 

There are lots of other ways it affects him but those are the major ones. He is obviously quite badly affected though because he has both lax joints and low muscle tone, you can have much milder versions.

 

Lynne

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Hi Trekster.

 

I've just been dx with HMS by a neurologist in London I saw for a second opinion on my migraines. Waiting for his letter to come through to the GP as he wants me to see Professor Grahame (if the PCT will fund it). Also on the waiting list for OT and physio.

 

One of the biggest changes is recognising that I'm genuinely exhausted not just depressed, trying to pace myself a bit more, and having a little bit more faith when an injury needs checking out (yes a toddler tantrum can cause a dislocation that needs immobilising if they twist your thumb on the way out)

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amberzak   

I've just realised that the ability to bend my tow back isn't normal. I always knew my elbows being twisted was unusual and that I have 'knocked knees' as my parents called them, but didn't realise I shouldn't be able to bend my toes back. The really strange thing is that I am not at all flexible with my fingers. Only the rest of my body.

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Hi,

i just read this post and had to reply..

not only do i have EDS/HMS, but both my sons do as well ( 50% chance of passing it onto your child as it is genetic).. My youngest was diagnosed HF Autistic spectrum Condition, ADHD, post traumatic stress disorder and OCD, when he was about 5 and he is now 10...

I was diagnosed EDS in 2001, while pregnant with my second son and boy did everthing make alot of sense after I found out all about it...

I have also heard of a link between ASC and EDS/HMS and have been looking into it myself. I'm off to see my specialist in April ( long time to wait but he is the UK leading specialist ( prof Grahame who diagnosed me in like 5 minutes as i am hypermobile in practically every single joint in my body)on EDS/HMS) and will be asking him about it as well.

Trekster, since my diagnosis and obviously with my children also having EDS/HMS I have learned a hell of alot about the condition , just as I do now about Autism/ASC/ASpergers .. I guess because it's my nature to learn everything i can about something... I also work with children on the spectrum..

 

so I wanted to tell you that if you have ANY questions or want any advice, practical or otherwise, please do not hesitate to contact me, ok?

 

I'm over 42 now and know fully just how EDS/HMS can affect every aspect of your life... But it doesn't have to be difficult. the best advice i could give to anyone just finding out about their EDS is to 1- learn all you can about your type. 2- PAY ATTENTION to your BODY- if it's telling you to rest, then rest! and finally 3- find your balance. find your level of activity balance- by that I mean, it's like give and take with EDS... If you have a very active day, more the usual- you will feel it the next day and possible 2-3 days later, like I do. so you have to find a balance that allows you to be active, remain active but have "respite" time to recover from it. with 2 growing boys, this was a BIG lesson for me.. oh, and the other lesson- remain active! You have to find some daily activity- exercise- whatever -to remain mobile. for me- it's walking. I walk about 15 minutes every day and because of it- I don't stiffen and become more sore then normal... but then. I am a bit of an extreme example as I am hypermobile, as I said virtually in every joint and have lived in chronic underlying pain for over 20 years now. Everyone experiences EDS differently....

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I was diagnosed with hypermobile joint syndrome a few years ago by Prof Bird (now retired). Knowing why I suffer from pain has been helpful in getting the medical profession to help without looking at me as though I was mad. I am very sensitive to progesterone. This means that I need to avoid hormone pills and coils as they cause my ligaments to relax even more than normal as make me more liable to damage. I now can track the pattern of my pain to my menstrual cycle so I plan things so I can take it easy when my progesterone levels are higher when I'm due on.

 

With regard to splints etc. I recently got a pair of old fashioned callipers from the orthotic department - they were very surprised that I was happy to wear them but you can't really see them under long trousers and I look less silly with them then I did when I was loosing my balance all the time! I also have neck and wrist splints and knee braces, but I try not to wear these as wearing them too much can lessen the muscle strength and cause more problems. xx

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jb1964   

Hi Trekster,

 

My daughter also has hypermobile joints - we've just had an appt. today with the Orthopaedic Consultant as she's had problems walking since April(with her one knee) - he's said that her patella's ride high - he thinks this goes hand in hand with her hypermobile joints and the flexibility can cause inflammation and pain where the kneecap is bouncing around everywhere instead of gliding the groove.

 

She's also had various blocks of OT to help with her hands (her fingers are particularly affected) and info on special equipment - she also had inserts for her shoes.

 

Coincidently, HMS and EDS can be a variant of the genetic disorder she has which they believe is also responsible for her ASD.

 

Take care,

Jb x

Edited by jb1964

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Hi Trekster,

 

My daughter also has hypermobile joints - we've just had an appt. today with the Orthopaedic Consultant as she's had problems walking since April(with her one knee) - he's said that her patella's ride high - he thinks this goes hand in hand with her hypermobile joints and the flexibility can cause inflammation and pain where the kneecap is bouncing around everywhere instead of gliding the groove.

 

She's also had various blocks of OT to help with her hands (her fingers are particularly affected) and info on special equipment - she also had inserts for her shoes.

 

Coincidently, HMS and EDS can be a variant of the genetic disorder she has which they believe is also responsible for her ASD.

 

Take care,

Jb x

 

Hi. Jb, what is the genetic condition your daughter has, if you don't mind me asking?

I have EDS as does my son who is on the Spectrum and also co-existing conditions ADHD, PTSD, OCD and I know they believe there are links between ADHD/ADD and autism, and now lately maybe a link between EDS/HMS and Autism.. I'd like to know more about that research and any that are linking all the conditions mentioned... ( I'm hoping to start my degree shortly)

 

thanks.

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jb1964   

Hi. Jb, what is the genetic condition your daughter has, if you don't mind me asking?

I have EDS as does my son who is on the Spectrum and also co-existing conditions ADHD, PTSD, OCD and I know they believe there are links between ADHD/ADD and autism, and now lately maybe a link between EDS/HMS and Autism.. I'd like to know more about that research and any that are linking all the conditions mentioned... ( I'm hoping to start my degree shortly)

 

thanks.

 

Hi Mortisha,

 

My daughter has x-linked PVNH (periventricular nodular heterotopia with the Filamin A gene affected) http://www.ncbi.nlm.nih.gov/books/NBK1213/ and http://www.lissenzephalie.de/pvnh_eng.htm

 

Among other things it is associated with hypermobile joints but there is also a PVNH4 (PVNH with Ehlers Danlos variant). When we initially saw the geneticist she only had one other girl who presented with an ASD diagnosis - but now she has two and believes they are linked - also a PVNH support group I belong has quite a few children with ASD diagnosis or OCD/anxiety disorders etc.

 

Take care,

Jb x

Edited by jb1964

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Saw Prof G this morning. Diagnosed with HEDS, chronic pain and gastro complications as well as probable POTS. he has referred me to Stanmore for 3 week intensive rehab, to Prof Matthias about the POTS and to a gastro specialist. Going back to see him in 12 months.

 

(null)

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trekster   

Hi folks

 

Thanks for your replies, i have just found this thread by accident, now added to the 'following' list.

 

I've recently been discharged by my rhematologist and physiotherapist and feel a bit lost. My rhematologist wants me to check out the 'nhs choices' website for ways to rehabiliate me but despite my explaining i have little motivation to do things on my own like that he felt i was the most motivated person he knew. He thinks i should aim to be out my wheelchair in 1 year but i doubt that is going to happen as no physio for my ankles has been prescribed and i dont want to risk injury by attempting to walk.

 

i have just started essay number 2 due in the middle of March so that shows how unmotivated i can be about things.

 

i keep asking my support team to remind me to do my physio but they either tell me after ive eaten (which would caused nausea) or they dont remind me at all. ive managed to keep up with most of the shoulder and knee exercises but they cause a crunching senstation in my bones when i try the shoulder ones. sciencegeek mentioned about rotator cuff exercises so im trying to do them daily to help with my wheelchair pushing. im finding that i sit up better when pushing my wheelchair now so less likely to pull a rib out.

 

Recently i had a breakthrough with my mum, she pushed my wheelchair for the 1st time when attending 'the drifters' concert in wsm.

 

Rainbowsbutterflies i wish my diagnosis had been so through, im going to ask the doctor on Friday to refer me to stanmore and mention the strange heart symptoms ive got (along with temperature regulation difficulties).

 

JB1964 i havent heard of your daughters genetic disorder before, is it similiar to fragile x? (which i dont have).

Was the OT helpful to your daughter? my last 2 fingers tend to be stuck when i take off my carpel tunnel night supports in the morning and feel looser than the rest of my hand. Also i can see the tendons moving over my knuckles and on the HMSA forum this appears to be common.

 

Janice F-J i have just come off the depot (progestrone only contraceptive) and have already noticed my knees have improved. i am watching out for signs of depression (i think i might be PMDD) and am trying to get a referral so i can have a hysterectomy (having children is too risky with the ASD, dyslexia and HMS combined) but as im under 40 this is unlikely to happen. i would appreciate any PMd advice you can give about planning for when your due on especially if the pain increases your snappiness with others.

 

amberzak what joints of yours are hypermobile? If you also have pain in 3 or more joints you might want to look into getting a diagnosis. http://www.hypermobility.org/

 

mortisha69 i am learning all the time mainly about my HMS. One thing that i have realised recently is when i control the pain i am less likely to have ASD related meltdowns. But due to my ASD im unable to communicate pain in the conventional way. In fact only a few months ago was i able to say 'ouch' without fearing being shouted down at by someone else as used to happen when i was a kid.

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trekster   

My son has generalised HMS (hypermobility syndrome) and moderate (used to be severe) hypotonia.

 

He was diagnosed with both from a very young age. They obviously can occur outside of ASD but is a fairly common co-morbid. We haven't had to make any changes as such but they do affect him quite significantly. He didn't walk until he was 3, has poor posture and gait and tires really quickly. In terms of gross motor skills his balance isn't great but it's improving all the time. He can walk independently, but will tire/become unstable once he tires if he's walked too far. He will also get really sore knees. His ankles are particularly bad so he is in piedro stability boots and is likely to be in them for quite some time. On top of the boots he has metal insoles to stop him toe walking and other insoles for support. His core muscles are quite weak so he has stands with his hips pushed forward so we need to keep an eye that he doesn't develop curviture of the spine.

 

Ive also got a weak core but it seems to be improving and im less stopped over than i used to be especially when using my wheelchair. Your son sounds like me except i walked when i was 18months old still late but my family put this down to my later ASD diagnosis. i did have some developmental delay with learning to write. Have you tried those really thick pens, or putting blu tack around the pens so he can grip better? My knees tend to have a band below my knee cap that can get quite numb and i keep injuring them beause of my poor cooridination. I've dislocated my right shoulder twice and have numerous daily subluxes, i sit at the pc with one ankle bent under without realising. When i was younger my hips used to get stuck under the table and i had to manually move them when i stood up, looking back those were dislocations.

 

In terms of fine motor skills he couldn't use cutlery till he was gone 7. Still doesn't have the strength in his hands to push the fork through food. When he tries to push buttons that are quite stiff his fingers just bend right back. He can't use a pencil/pen/scissors or anything like that yet. He is getting OT specifically to help with this at the moment because he does actually want to write, he just physically can't. Same with using a white board etc, he can use touch screens on things like his ipad, but doesn't have the strength to drag from one side of a whiteboard to the other.

 

My last 2 fingers are badly affected and using cutlery is very difficult for me. i need someone to help me cut up my food but since ive got my carpel tunnel splints and my rhemy says i can use them for other activities im going to try them with the food issue. i also have the problem except with buttons on the key pads to some toilets. i cant use an ipad the touch screens drive me mad.

 

There are lots of other ways it affects him but those are the major ones. He is obviously quite badly affected though because he has both lax joints and low muscle tone, you can have much milder versions.

 

Lynne

 

My knees are badly affects, as are my shoulders and fingers, my little fingers scored points on the test for hypermobility, my thumbs nearly did. The only joint unaffected is my back but my neck can bend at 90deg.

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trekster   

hyper-mobility ?

 

Close hypermobility syndrome or Ehlers Danlos Syndrome (there is much debate over whether they are the same thing).

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trekster   

Update on me, i am now 83.6kg which I thought was an OK weight but I am fat and need to loose 14kg that's about 2 stone in weight.

i dont believe in calorie counting after doing my University diploma in diet and health it strengthened my belief that diets wont work.

unsure what to do as im very inactive due to pain and fatigue, I guess going back to swimming is on.

 

Anyone got a good converter to how many Kgs or stone you can burn with swimming? It would really motivate me.

 

My sisters birthday tomorrow and I hope to start my diet off properly afterwards, think I need to go back on the chromium

picolonate to help with blood sugar regulation and prevent me overeating between meals.

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try eat lots of fruit and veg? not eating preservetences make it all from scratch the food. And the stuff from freefrom aisle that involve snack bars , crackers etc cut down on them. Eat lots of chicken and fish.

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trekster   

Hey you're almost copying me with disabilities, lol

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oakers   

I've just been to Sheffield last week to see a specialist and was told that it is likely that I have EDS Type III - hypermobility. She wasn't sure on my skin so took some pictures of scars to show her colleague and will then write to my GP with diagnosis.

 

Hoping that this is the case as then I'd finally have a diagnosis that explained more than it didn't... ie the diagnosis of chronic widespread pain didn't really convince me.

 

While there I asked about a possible link with EDS and AS / ASD but was told that it's probably only seen due to the fact that more people are being diagnosed with both now... not convinced with that theory either!!

 

Waiting on my letter to see what the final diagnosis is.

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trekster   

<p>There is some evidence in neuroscience research that ASD can feature in the HMS diagnosed population.</p>

<p> </p>

<p>28/5/13</p>

<p>ive been trying to use my wheelchair for pacing but im still shattered with my EDS. Mondays is karaoke, Tuesdays is choir, Wednesday or Thursday is an autism social group with Friday and all weekend at my grans (starting this weekend). Stanmore are unsure whether im pacing by doing so much at the beginning of the week. My sleeping is really poor resulting in having only a partially functioning and alert brain before 11am. ive missed meetings and appointments even home help due to my messed up sleeping.</p>

Edited by trekster

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I am really struggling with all my pain all over me. It was nice that my doctor bothered to even tell me she tested me for Ehlers Danlos in December, but only bothered to tell me today. Well i told her how much pain I am in. Sharp stabbing pain running through my arm, fingers which in result i find it hard to do cooking and typing. I told her i shouldnt be able to bend my fingers back she told me i dont have ehlers but others say i have the facial features of it, but they also believe i have fibromyalgia. But i dont believe my surgery because I tell you why, the hospital says I have things, that the surgery disagree with. Remember GP's are General Practioners, would u believe GP's or the hospital? I tell u the things the hospital and say that i had.

 

Hospital- Mild Concussion, GP- Whiplash

Hospital- Migraine , GP- Cluster Headache, but only a tiny migraine.

 

I dont know what to do, this has been going on quite a while, a long time ago they put it down as muscle inflammation but i dont think its that.

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Lyndalou   

Hi Special

 

From what I can gather from having a look at some information about Ehlers Danlos, it looks like it can be quite difficult to diagnose! However, I think that they should be telling you what they are testing you for - it's your right to know!

 

It must be frightening that your GP and the specialists say different things to you. However, a lot of the times, doctors (GP's) only have a set of symptoms to refer to and only have a limited knowledge of many many conditions so sometimes it's only their opinion or best guess. Specialists are just that; they know a lot more about a specific set of symptoms than a GP might in the fielsd they specialise in and this is why you are referred on to them from your GP. However, if things are really hard to diagnose or very rare they still can be making a best guess based on their experience and knowledge and don't always get it completely right!

 

Lynda :)

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Lyndalou   

Special

 

It does sounds very confusing! Have you written down a list of your symptoms so that you can show them to the doctor? It can be really difficult to remember everything you want to say when you go to the doctor. My dad was back and forward to the GP for 2 years with all sorts of strange things and after 2 years he was sent to a specialist who 'joined all the dots together' and was able to say he had a condition which is pretty rare! What I mean by that is that you might be having all sorts of problems but on their own or even some together it might look like you have another problem than Ehlers-Danlos. However, even symptoms or problems you are having that you didn't think were connected or important when added together with other symptoms could provide a different picture for the doctor. It's often like solving a big puzzle.

 

Have you asked anyone to support you or help you with trying to get this diagnosis or are you doing it on your own. It might be good to get help and maybe ask for help from an Ehlers-Danlos support group to find out the best way to go?

 

All the best

 

Lynda

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Lyndalou   

I know it's not quite the same thing but I have hypermobility in my joints and I get a lot of back and neck pain because of it. Last night I was kept awake because of my wrists and fingers and ankles playing up! It was confirmed by the chiropractor I see but it's probably not bad enough to be classed as Hypermobility Syndrome. What the chiropractor does is quite similar to the treatment you get from a physiotherapist (or at least the end result is). Is it worth asking for a referral from your GP to a Physiotherapist who might be able to help you control the pain you are in?

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Hypermobility is part of eds google ehlers danlos go on nhs direct. I can bend fingers back and bend hand around and others said I got facial features because skin is soft and sensitive

 

I am moving quite soon so it be too late to ask I have to do that when I've moved

Edited by trekster

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trekster   

Pain in 3 or more joints for 6 months or more and hypermobility of 3 or more joints qualifies for a HMS or EDS diagnosis. You can have fibromyalgia and HMS/EDS at the same time.

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trekster   

Muscle inflammation sounds like a previous term for fibromyalgia.

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trekster   

There are a number of centres you can attend now to help with HMS\EDS3. ive been going to Stanmore, theres also a centre in Glasgow, one in bath (ive heard bad things about them though), Southmead in Bristol and possibly other places.

 

I'm having the following problems with them though;

 

1, I can only see them once every 6 months

2, they are poor at replying to my emails

3, im having problems understanding the concept of 'pacing'.

4, I still haven't come to terms with my HMS\EDS3, partly because a friend of mine died when I got diagnosed back in 2010.

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pollyw   

i was dx with eds 4 years ago, and it still hasn't sunk in properly. pacing I ok with if I get into it. then when Im slightly busier I forget to pace until I feel exhausted. I went to Stanmore too trekstar, the course was really tiring for me, a lot of the people that went were shutting their eyes come the afternoon in the talks! so I wasn't the only one.

 

pain is an everyday thing, im sort of used it now. in the beginning around 7 years ago when I was experiencing all over body pain, constantly I would wish for a day or half a day where I could be symptom free, now I don't do that because I know its not going to happen.

 

also have p.o.t.s which dizziness is frequent, and the autonomic symptoms that go with it.

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trekster   

I got the HMS diagnosis in 2010 so ive known almost as long as you. I don't cope very well with it either and tend to use a wheelchair when im out. At the moment im on tramadol because the damp related pain is so bad.

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I am really interested in this as my younger son has hypermobility as well as Marfan Syndrome ( a connective tissue disorder) as does hubby. My older son who is autistic saw the psychiatrist who said to get GP to refer to look for EDS and PoTS and this could be related to depression.

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