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Local medics or NHS assuming EDS is only a MH condition

0101 profile image
0101
20 Replies

I have been surprised recently by the assumption that EDS and associated distress is a Mental Health condition. Excuse the length but I would like your input - is this how patients are treated and is there a way to shortcut this confusion from services? Anything I can do? This is a repeat pattern over a few years now - being diagnosed in my late 30s was a relief but the rest perplexes me.

I've been deteriorating. I had to keep calm and articulate yesterday as I explained my current health crisis to two great call handlers and one Dr at 111, then two helpful paramedics, who didn't know what to do so the Mental Health Street triage team of a police officer, paramedic and senior mental health nurse arrived. Then the police officer and paramedic had to ask the mental health nurse to leave as he was being aggressive towards me which was fairly unhelpful. They were shocked at how he spoke to me and how aggressive to someone in pain and distress. He was rude, then started accusing me of 'picking on him'. I was crying at points but not aggressive myself.

Thankfully I was heard and listened to by the last two - but after six hours triage I was very tired, still in pain, with nausea and was very relieved they listened and I was heard. I was handling my distress but it wasn't easy. One's wife has a chronic pain condition and the police officer was also calm, humorous, empathetic and they and we turned the interactions around. We agreed I need urgent and overdue tests, but A&E unlikely the right place. They assessed me as needing full blood count and urgent care, but we agreed this should and could be done in the community. They were also empathetic about my waits to see local pain services and poor local coordination which frustrates them too. They reassured me they'd put a referral through to my surgery to remind them they promised an urgent review but six months have passed since that agreed plan and nothing. They assured me I would be called this morning. They were frankly delightful.

All local services 'signpost' me back to UCLH or RNOH who say, no, this is your patient, we discharged her into your care, follow the treatment plan, manage this locally and with the GP as your hub. This afternoon I was called by a new GP who said this was too complicated, she's never met me and she'll call me next week. She said what's happened up til this point is nothing to do with her. She read some notes out to me from her colleague at the start of the year that were inaccurate - apparently I was referred to 'social prescribing' but wasn't. It was stated I declined. That shocked me. I used to take simple notes with me to explain my conditions and history along with all consultants letters but this is poor, and my poor health and lack of support is obviously having an effect on my mental health. Mental health services have been serially unhelpful as they don't seem to be aware of chronic conditions or EDS. My advocate retired last year and I have been waiting to have her replaced. I have anaemia, pain is substantially worse, my mobility is poor and worsening and I struggle to do activities of daily living. Apparently all these can wait.

20 Replies
Trickysite profile image
Trickysite

sorry to hear of your awful experience. It may be little comfort to know doctor’s notes are often inaccurate! I speak from having read the notes of many (very good in practice) doctors. I think social prescribing means activities such as swimming etc, which can help if you can do them, so no bad thing in itself. In my experience, EDS can be very depressing, so perhaps EDS and distress go hand in hand. You may need emotional support as well as something to help your physical symptoms. The new doctor probably wants to give adequate time to you and therefore her response may not have been totally out of place. I hope she proves a lot more helpful. Eds always takes a long time to improve when it hits a downward patch, always 2 years each time in my case. I have found “pacing “ activities by starting from a low level and very slowly increasing works for me and I hope it does for you.

0101 profile image
0101 in reply to Trickysite

Thank you so much for your reply. I used to have to explain what social prescribing was to my GP surgery and now apparently this week I find out I was referred but 'declined'. Not great to find out six months later as correcting that is a bit pointless. We did discuss it as I asked for it last year and a few times, but the GP was 'unsure' what local provision is. I was referred for an 'exercise course' and it turn out after a few 'initial assessment calls' that it was a weight loss course (self-directed)! Most of the local NHS physio is geared up to that. Seeing as I have struggled to gain weight and if anyone met me they could see that it was fairly frustrating. Most is contracted out now to private providers and 'community' services are a mess with very frustrated staff. I've had great physios but short term and then they've moved. Consultants have referred me to physio and hydro, then I was turned down after someone said I was 'scared of water'. Seeing as I used to swim competitively I was again frustrated. They had shut the hydro pool and only admitted that in local press about two years later. I've had a flurry of panicked calls today (apparently I am one of the longest waiters on our local hospital list so might get an appt in the month) so it's bit hard to pace.

We had an agreement that I would get a call every few weeks to check on my low iron etc, six months back but apparently my GP Partners 'declined' to give the salaried GP permission. So who knows what this new one will be allowed to do. The previous one resigned and phoned me in tears to apologise for not having reviewed me a few years back, which she said wasn't acceptable and she would be leaving, so funny things afoot.

Trickysite profile image
Trickysite in reply to 0101

Try taking liquid Spatone for anaemia. Available from chemists without prescription. Lovely in mango juice. Dietician told me to eat nuts, liver, chickpeas etc. I had to have 3 blood tranfusions for anaemia becos of the drug I am on for my cancer, They have lowered the dose but I keep up the diet and Spatone.

0101 profile image
0101 in reply to Trickysite

Done! Lovely Welsh water. I also take vit and iron sprays and have done since the superb gastro who diagnosed me suggested it (and that I was textbook). But I'm forgetting and struggling to think straight. Something is off though and it's the full blood count I need to rule simple things out. I've been bedbound and unable to walk again recently which has meant food prep got tricky and my diet suffered. This feels like the slow rumble back down to needing a transfusion again - it's funny how bad you have to get though. I avoided a trip to A&E having been promised that a nurse at the surgery could do bloods but GP has apparently 'forgotten' again and the paramedics' urgent request seems to be being ignored. It's a farcical blood testing booking system now locally. I can't stand or even sit to shower and leaving me for another week feels silly. Randomly bursting into tears is a good clue. I have an appointment with a new Rheum now on Monday so I hope I can get there.

Trickysite profile image
Trickysite in reply to 0101

Yes,have four times spent 3 months in bed and then started sitting up for just 5 minutes once every hour and slowly built up from there. What has made an enormous difference is being on celecoxib 100mg twice a day and 2mg of diazepam split into 3 sections per day. Have been on these drugs constantly for 20 years and since then have never had a day in bed.

0101 profile image
0101 in reply to Trickysite

This is astonishing - and gives me hope. Not a day in bed since? I've had migraines for the past week (or one long one I'm not sure) now out of sumatriptan. I have been on some meds then don't seem to get follow up for a repeat script so taper then stop the meds that are working. I used to be trusted with pain relief and was trusted to manage it. Then was grilled on having 5 diazepam that I was portioning out one at a time over months. Then I speak to Consultants who laugh and say that'll not touch the sides. The paramedics were a bit shocked I'm on tranexamic acid which was a miracle discovery a few years ago, but apparently you shouldn't be on for longer than 3 months without review. I hope the new Rheum will check and be curious enough to link it all.

I tore a muscle in my side last year when feeling full of hypermobile energy and was gardening. But I couldn't sit up or change position. In A&E the doc was superb, listened, I suggested a muscle relaxant so he illicitly gave me diazepam to, ta da!, relax the muscles - it worked quickly and within three days I was recovered. I can't get over the fact you've been able to be on that regime for 20 years!

Trickysite profile image
Trickysite in reply to 0101

actually 40 years, if you count the 20 years before on Naproxen. The Celebrex always helped but the real key to staying out of bed was when my GP added the diazepam as a muscle relaxant and it is the combination of celeb and diaz that keeps me on the straight and narrow. In the previous 20 years, I had been in MAJOR difficulty four times. If I feel a leg or back muscle starts to go into spasm I just up the diazepam for a few days and then slowly bring it down to 2mg per day. I always keep the celeb on the same level.

Geography1 profile image
Geography1

Hi, sorry about what you are going thru, it is so frustrating not beating able to get answers or help, have you had your thyroid function tested? Taking NDT (natural desiccated thyroid) hormones helps my joints greatly, as well as my palpitations, I have been brushed off by numerous doctors until Inwenr to a geneticist who said I met the criteria for EdS, she recommended a book by jeanniedibon.com/ which has helped me greatly, taking turmeric also helps, they also recommended CBD and magnesium but I have not try that yet, the thyroid hormone seems to help and being aware of my movements and posture, not over doing anything and stretching very gently in the mornings. Check that website out,. Might help a little, hope you feel better, hang in there.

0101 profile image
0101 in reply to Geography1

Thank you! What's most helpful is knowing I'm not alone in this as it starts to feel crazy and isolating. Thyroid was low in 2019...and still waiting for any follow up. I've been making things up as I go along really, supplementing with what I can obtain. I will try to pursue it again. I did pay to see a private GP a few months back but unfortunately she said I can't access your notes, so can't do anything, so you'll have to go back to your GP.

I was on morphine while I waited to be seen in pain clinic in 2015, then I got myself off it as it was affecting my GI tract and I was miserable. A Rheum got fed up with me waiting so prescribed fentanyl patches in 2020. Then I couldn't get a GP appt or phone call or message through, so ran out and no follow up script. And that was that! I've tried CBD but haven't got the dose right. I am checking the website now :-)

0101 profile image
0101

Hi again @Trickysite and @Geography1

I just wanted to thank you both again for your replies here. I went to see the new Rheum at the local hospital today accompanied by a superb new advocate. The Rheum didn't seem to understand what pain rehab/recovery or pain clinics do and despite me confirming contraindications wants me on amitriptyline, BuTrans patches and refused diazepam point blank, saying 'it's highly addictive'. Other doctors have prescibed short courses and it's been short-term and effective and part of a treatment plan that we've discussed. No addiction issues or difficulty coming off. I took myself off Oramorph years ago but that insitutional memory has gone. She also argued about where our local consultants/clincs are based then admitted she didn't know and I was 'probably right'. She also eventually admitted she hadn't read my notes. And my GP 'should' be monitoring and reviewing me, so why was I there. She said I might have 'thyroid' issues and I said I do but am having no treatment despite it showing in previous blood tests (several over past few years). She queried my family history despite me giving accurate detail. She said she was too busy with her list today.

I said I was loathe to start on another cycle of drugs, then fall in a gap, then be seen by the next clinician, be asked to stop, to get a blank sheet to start from, figure out what's going on, then start again. Consistency please.

It's funny how each one wants me on the drugs they favour, and I politely pointed out the Consultant two before her wanted me on Fentanyl, the last one advised against it (I'd had no GP review so only had the initial course from the Consultant and 5x patches anyway) and cheered me for not still being on it. Now this one was pressing pain meds on me, and also wants to diagnose me with fibromyalgia. She seemed suspicious of the EDS diagnosis, despite UCLH and RNOH confirming these and doing comprehensive assessments. She insisted on 'examining' me and seemed to find it amusing (oh wow!) and only believed my range of joint movement by physically pushing my joints around. The Consultants at UCLH and RNOH do so sparingly and not for their own curiosity or repeatedly. I subluxed and grimaced as she did so then she asked me to touch my feet. I placed my hands flat on the floor and looked up at her thinking I'm a performing monkey again. This doc also claimed that as I hadn't had a genetic test the diagnosis was in doubt. Really? Maybe she should take that up with UCLH and the research team there who never treated me with such suspicion or disdain. I revealed my sister had died in 2020 and she dismissed it. To be that incurious and callous shows a level of burn-out or lack of compassion that is upsetting.

It was fairly shocking as she also revealed she has 'no idea' what local pain clinics are (but apparently there isn't one) and the waiting lists are very long. And she will refer me to it. None of that made any sense. What am I being referred to? I think 'anywhere but here' is the answer to that.

Trickysite Geography1

Fuunycat profile image
Fuunycat

My suggestion is to use online blood test companies. NHS doesn't do broad blood test unless they have to (I have chronically low vit D and they won't test me unless I get out side test done first). Also there new guidelines to do with pain that heavily rely on mental health being the main problem and not to give meds

0101 profile image
0101 in reply to Fuunycat

I will have a look, thank you. They had to (in the end). Very odd things going on locally for a few years with testing equipment shortages and 'only if necessary'. I've never had a blood test spuriously or for fun I have to admit. But shocking that your body can be in pain as something is going very awry and can be solved easily but it's all just instantly dismissed as 'mental health'.

Typicallygaslit profile image
Typicallygaslit

I was diagnosed with EDS at 52 but unfortunately it didn’t break the cycle of being told I just have a mental health issue and CBT will fix it. It’s all just BS of course and on the whole, doctors tend to write a whole load of rubbish in their letters. One thing I have recently begun to understand is the issue with iron, and that’s a whole new ball game. Because of degenerative discs and osteoarthritis and various neurological issues in the brain and spine, it seems I’ve had restless legs syndrome since I was 15. I just didn’t know what it was and no one enlightened me. This is a very serious condition that maybe is worth looking into? I think it explains most of my symptoms of anxiety and depression in the past. Unfortunately doctors are clueless, callous and unwilling to help, always coming up with unfounded excuses and distractions. I should be on a low dose opioid but they refuse me. However if you by chance do have rls, you do need to take large amounts of iron to get to an acceptable level, espeically if you already have anaemia. I hope this is helpful.

0101 profile image
0101 in reply to Typicallygaslit

Ah yes, thank you, it is! I usually feel very down and strange when my iron is low and like bingo blood tests then show it's low. I feel so much more human and 'normal' when levels are higher. I am supposed to be being 'monitored' and have regular tests but that's what I'm struggling to get them to do. It was another palaver and bouncing around services signposting me out rather that dealing with it. I had a very good hospital phleb take bloods and hope I'm back on the radar now.

Bit of a concern is when you have one label other things get missed. Despite trying to be proactive. It's really surprised me how many women are fobbed off, yet some things are easy and cheap to treat and bring quality of life back. I once spoke to a great clinician who told horror stories of TATT (tired all the time) being lazily written as a sympton in so many usually women's notes, then never followed up. It's a great clue something isn't quite right and should be investigated.

0101 profile image
0101 in reply to Typicallygaslit

I just wanted to add, keep your head up, I can see from your profile name how frustrating this all must be. It's very helpful to get advice and frankly support from others who are in the same, slightly leaky boat! More heads are better than one and all. Don't let them grind you down.

Typicallygaslit profile image
Typicallygaslit in reply to 0101

No, it’s true my whole life has been a struggle with the health care system and it’s not getting any better as negligence, ignorance, misogyny and general suspicion is on the rise. If I were you I would read up on restless legs because it’s a very serious disease and if you can pin point it, then you might get better help. It sounds to me like you’re currently not focusing your search for help? If you don’t have this problem (which is typically co-morbid with osteoarthritis) then I can only say I’m sorry medical staff are ignoring you because they shouldn’t. I’m sorry to say they are grossly incompetent for the most part. I was told by my GP that ferritin at 52 was normal and she knew this from being a doctor for thirty years. Well, if you have a chronic illness and restless legs, then it’s not normal. In this case it’s not about old fashioned anaemia, but low iron brain stores due to problems with the metabolisation of iron. I’m finally getting the doctors at least partially on board with this idea so they are monitoring my iron levels as I’m trying to push them up, but it’s a horrible battle as I need drugs they just don’t want to give me, and it’s all very patronising. I’m currently taking crazy amounts of iron, up to 130 mg elemental iron a day (not sure specialists would recommend it but that’s what the GP suggested). Either way I do hope the iron is going to solve some of my most crushing problems, notably the insomnia. My point is that low iron is likely to cause terrible havoc ESPECIALLY in people like us who are chronically ill. So I can’t stress enough how eye opening it has been to see the latest research into these kinds of problems. I also found out I have a gene variant that reduces my ability to process iron and dopamine. Yes, chronically ill people and especially women, all need to gang up because medical practitioners are actually ganged up against us!

Typicallygaslit profile image
Typicallygaslit in reply to Typicallygaslit

What iron supplements are you on?

0101 profile image
0101 in reply to Typicallygaslit

Hello again. I'm more unwell and struggling with tech a lot and these went into junk, so thanks for your reply and I'm sorry for delay.

I have read up some more and on RLS. I was focusing my search, then people keep throwing curve balls and adding in new guesses rather than actually investigating issues properly. The new Rheum 'agreed' I have EDS (oh thanks so you're not arguing with me and previous diagnoses then, great) but now has added Fibro in too. Got results of blood tests and amongst other things my ferritin is 6.4ng/ml (13-150). I am checking what that means (I forget every time depending on the range) and I'm realising how low that is. The consultant is 'strongly asking' my GP to monitor me in primary healthcare and shock horror even see me in person once or twice a year. Fat lot of help that will be. Who knows how long it'll take to get a response from the surgery and only if I nag them, but the consultant wrote in bold font in my copy letter and stated how ferritin keeps dropping so please can they properly investigate. I do hope your elemental iron is starting to take effect. I was on ferrous fumarate and folic acid a year or so back but then was told to stop as 'levels were normal'. It seems they weren't and I'm not on it long enough (or monitored) then it nosedives. I had infusions before in hospital but not for a while. I take Spatone and the Rheum said she needs stronger stuff than making do with over the counter. I've only been taking over the counter as an interim measure as I was so desperate.

It is a battle, it is patronising to have to fight it to be heard, and I really hope your insomnia is lessening. Chin up if you can :-)

Typicallygaslit profile image
Typicallygaslit in reply to 0101

Thanks, glad you didn’t disappear :). What you’re describing is just so stereotypical and by that I mean that we are ALL EDS’rs treated in this way. We are ALL so very tired of having to fight for our rights as human beings to be treated with respect and having access to vital medication and support. So in regards to your ferritin, that’s SHOCKINGLY low. Sorry to be blunt but I’m surprised you can get out of bed at all! I personally never thought I suffered from aneamia, and actually I don’t. But as I dug deeper into the whole business of restless legs syndrome, I started to see something quite different from the mainstream narrative. It became clear that ‘normal values’ may not be normal for sick people like you and I.

I finally got the GP to do the blood works to check certain levels that could affect RLS, and got ferritin 52. SHE said it was perfectly normal. It said ‘normal’ on the paper. But it actually ISN’T. So I’ve also had a sleep test this summer which was a complete disaster because of medical incompetence. They thought I was awake during the whole test, when actually I only slept for two hours. Vital information was missing. This completely skewed the interpretation and made it very difficult for me to explain things to the GPs. The only positive is that they did see restlessness and recommended that the iron should be above 70. That’s at least a LITTLE bit validating. However, the experts think it should really be over 100 if you have symptoms of restlessness (I have all sorts of symptoms I thought were ‘just’ fibromyalgia). The bottom line is, there is a very strong connection between degenerative joints and discs disease, osteoarthritis, funny neurological problems that result in poor sleep and fatigue and pain, and restless legs syndrome. The iron is a very powerful contender in this context. The sad thing is that getting the levels up may not help all that much. It’s helping me in some ways but not controlling the RLS. It’s very difficult to change the iron levels in the brain, which is where some of the problems are. The other thing is that we have all this other stuff going on such as spinal lesions (which I have) and dysautonomia. I’ve come to the conclusion that I need opioids to control the restless side of things but guess how eager my GPs are to help me with that!! I’m fighting an awful battle. Yep it’s exhausting. But I just have to get them on my side somehow ;(.

I’m glad to hear your rheumy is on your side at least, that’s a start. My rheumy in England is also on my side. But I’m in Wales and the services are just abysmally poor here.

Anyways, I hope this is inspiring you to think more about the iron because it’s likely to help you even if it doesn’t eliminate all of your symptoms. I’m taking Ferritin Fumarate 320 mg per day and will have a test tomorrow to see if it’s helped. It’s very cheap and you can get it from a pharmacy online. I also got Ferritin Sulphate prescribed to me now the GPs finally admit this is important. The stuff you’re taking isn’t nearly strong enough. You need a product with high dose elemental iron and those OTC sachets and other fancy things don’t have much in them. You also need to be monitored as iron can be toxic and you can’t keep taking high doses. I was afraid I wouldn’t tolerate iron but lo and behold, my tummy actually likes it :D. I have chronic diarrhoea and the iron firms things up. So it’s important not to trust everything other people say… but one thing I do these days is teach myself about neurology and read every report and letter that comes from the consultants. It’s the only way I can avert complete disaster.

0101 profile image
0101 in reply to Typicallygaslit

Well, noswaith dda a diolch yn fawr. I will read (it will take me a while) and reply!

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