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Ehlers-Danlos Support UK
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Any advice please

Hi there I’ve been diagnosed with hyper mobility EDS for the past 10 years roughly and it seems to be getting worse maybe the older I get? I am suffering with the pain mainly and the extreme fatigue 😞 I am currently on codeine which is now not helping much I try all sorts of vitamins and hemp tablets cbd oil but no joy as yet!

I wondered if anyone had any advice on pain relief and any tips for more energy? I am hoping to go docs next week but I have no faith as they don’t really know our condition have any of you lot had any joy with gps?

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My best suggestions, having been through the same, is

1. Take regular breaks of lying down doing nothing. If you are still working, go off sick when you need to.

2. Switch up your pain relief for something more effective.

3. Lose any excess weight.

4. Start doing joint strengthening exercises: a physio or even a personal trainer can devise a plan for you. Pilates is also good.

I have never had any joy with my drs but as it was a rheumatologist who put me on stronger pain meds they cannot take it off me now.

Good luck.

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Thanks ever so much for advice!

It’s really hard because I work self employed and I like to keep customers happy but at same time I’m in agony! Luckily only work part time! What meds are you on may I ask ? I’ve heard gabapentin and pregabling are good for Eds but I know not same for everyone.

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I was put on tramadol and naproxen with omeprazole for gut protection. The naproxen damaged my stomach lining so cannot take it now.

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Oh dear sorry , that’s the trouble what the tablets do to our insides but can’t suffer in pain!

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👏👏👏👏🤗💗😘🙏

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How severe is the EDS? Do you have any known comorbid conditions? What are your known triggers? Are you carrying excess weight? Can you modify diet to gain improvements? I'd given codeine a big miss, if you're predisposed to MCAS in the slightest they'll give you a GI issue at the least. Sorry you're struggling.

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Hi luckily I don’t have joints that come out of place I’m sorry I don’t know what a comorbid condition is ? I am probably half a stone over weight and What diets help? And sorry what does MCAS mean? 😬 I am not very knowledgeable sorry

Thanks for your reply

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EDS and MCAS tend to be related which is why I asked. It's mast cell activation syndrome.It's good to think about what the underlying cause is as opposed to treating or focusing on symptoms and how to alleviate them.

So your problems are mainly body pain? Do you have any other symptoms at all? Even if they are seemingly unrelated?

Now this way of thinking may not help, but it certainly won't hurt and has greater potential for success than if you never thought it to begin with.

So ultimately is really like to hear about any symptoms no matter how obscure to think about any other potential helps.

There are certain foods and beverages which tend to be high in histamine. If a person is experiencing mast cell activation syndrome, then many patients get relief and resolution of symptoms purely with dietary change.

Each person's body is so different, but histamine is a heavy weight in GI dysfunction because we make our own in the digestive process as well as the fact that it's found in foods and drinks. So if it's a factor, reducing it can be helpful.

EDS is a connective tissue disorder, mast cells are located within the connective tissue. If a person is experiencing a mast cell disorder then eating high histamine foods can cause the perfect reaction to give joint/bone/body pain.

I started taking Cromolyn and antihistamines to reduce mast cell activation syndrome, as a result my body pain immediately reduced considerably. I was shocked. Dr Anne Maitland is not though, she understands this phenomena well and has studied and found resolution of arthritic style symptoms in treatment of mast cell disorders.

So there's hope of some helps. Keep digging! You have everything to gain and nothing to lose, knowledge is powerful.

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👏👏👏👏👏👏👏👏

Sorry for intruding. Thank you for your detailed explanation. I have hEDS and advanced osteoarthritis especially in my hands.

For to many years and the lifetime of doctors seen that dismissed me as crazy or (psycho) symatic dysfunction has left me in this condition.

It’s terrible with the slightest move dislocations (including trying to sleep in my bed) or a good case of whiplash from the simplest of bumps over the decades has left me with so much damage and pain off the charts and my GI tract cannot tolerate any pain meds.

I’m across the pond. I was unfortunately judged on appearance because I didn’t look sick so no way could I be sick.

My health is failing now. I hope and pray that others read this and will be able to keep pushing forward to find some doctor that listens and will help them.

Decades ago there was no internet and forums with fabulous members to care for each other.

Bless all who do this and may all who suffer be guided to the pathway of help less suffering and a cure.

My love to all.

😊🌸🌿🦋🙏🤗💗😘😇🕊🎄

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Hi thank you for your advice how do I know if I’ve got a mast cell problem? Do I need to go gp ? Or should I just try things as if I’ve got it ?

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A good Dr would be better. What country are you in? Maybe a member could offer suggestions for Drs in area.

But if you're desperate and finding it difficult to get a Dr with understanding, knowledge and time to be bothered, you could ask for some compounded Cromolyn and try it a couple of weeks and see if there's a difference. I had asked my Professor to try Cromolyn to see if it would help, she said it was a good thing to try as it is reasonably innocuous. Two weeks and I had significant pain reduction.

BUT that means my pain was mast cell related which could also be related to the connective tissue in certain areas which house the mast cells. So if it didn't reduce pain you'd want to look at more local cause. But if you're not over using or doing an exercise to exacerbate anything, have no known other conditions, it seems legitimate to look at.

Do you get any type of "allergy type symptoms"? Any gut issues? Feel bloated, sick after eating? Any foods you can't eat? Skin rashes? Colour changes? Itching, with or without rash? Bladder pain or frequency? Candida infections, thrush? Headaches? Bleeding nose? Bleeding anywhere? Easy bruising? How easily is your skin damaged? Do you experience any changes from fluctuations in temperate or pressure, like in an aeroplane? Sneezing, itchy watery eyes? Cough, wheezing? Chest pain, heaviness or discomfort?

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I am from United Kingdom South Yorkshire. I have bleeding gums , nausea some days , bloated feeling, bruise insanely easy!!! Headaches regular and can get migraines once a month.been having bleeding nose lately but never had before.Think that’s about it for me just the pain and very very tired like I could sleep for 10 or more hours a day! And still feel tired ! Don’t do much excercise because I hurt but I try to do yoga or stretches when I can.

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Is it possible there has been a water intrusion anywhere in your home, workplace, or somewhere you regularly attend that may have produced mold? This is something it's important to regularly check on, because all of the symptoms you're experiencing are connected to a microbial exposure and those with EDS are definitely more susceptible. So if there's any chance at all, you must find out because that would be life saving information.

Mold and bacteria trigger the immune system, they cause mast cell degranulation. So it's ok to treat mast cell activation of its your primary condition, but if it's not and it's a secondary condition, meaning the underlying cause is not faulty mast cells, but rather reactive mast cells because you're having an exposure, you certainly wouldn't want to be treating mast cell activation until you removed yourself or the very source of the problem.

If you're out of exposure and retain no belongings that are emitting VOCs from the exposure, and you're still experiencing mast cell related symptoms, then you could begin to treat them.

There's a Professor Janice Joneja in the UK who specialises in mast cell disorders. I'm unsure if she's treating. She maybe has other Drs in her team?

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Thanks for your reply definitely no mould where I live no water intrusion and I work as a mobile hairdresser 🤷🏼‍♀️

I thought a lot of the symptoms were Eds anyway eg bruising easy nausea headaches/migraines and bleeding gums?? I will look her up thanks

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I then wonder if at some point you in life you inadvertently encountered microbes unwittingly and that's why the escalation of symptoms, even if they initially pertained to eds. In any case, avoid those for the future. Before staying anywhere, including friends houses, hotels etc, check under sinks, take bottom drawers out of cupboards, smell for anything musty and avoid it if any signs in the slightest. I cannot stress this to you enough. Those with eds are particularly susceptible to microbes like bacteria, fungi, virus etc, hence it's also associated with increased infection risks etc.

Interestingly you're a hairdresser. I just finished looking at a paper today currently being worked on, adding to the data that they already have, that VOCs change gene expression. If volatile organic compounds change gene expression then simply chemicals can trigger mast cell activation. Science well knows this. So if someone particularly susceptible to environmental influence and chemicals handles them for a living, while having a genetic defect? Upregulate or downregulate that gene? What happens then? Exacerbation of said disease. Do you handle dyes, straightening/perming chemicals regularly, or did you?

It is a thought it may help you not to do that anymore, although I am not offering that as advice, your personal situation is deeper than I know to advise.

The easy bruising etc are all symptoms sure, but some can be helped, lessened or cured entirely. E.g. Whenever I've been given any type of hormonal therapy for birth control it triggered regular migraine attacks. I took birth control on and off throughout a 15 year period without realising that. When I stopped all contraception I stopped having migraine for the next 15 years. So I'm pretty happy to have learned that and not to accept that migraine is a given because of eds.

Every body is so unique and so individual, what affects one simply will not affect the other. Every tiny little influence must be considered in EDS to determine if there is a fixable cause, because it's driven by being extremely and inexplicably sensitive.

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There is a natural history to EDS which includes four stages, each progressively affecting the quality of life more. Some people stay in stage one or two, but others as they get older move onto the later stages. It sounds like that is what is happening to you.

Some of this can be caused by early onset arthritis, which is common in people with EDS, but there are also other things that can make things worse. And it doesn't depend on age. I was in stage 2 for many years, but my son who is 22 went straight to stage four!

Pacing, gentle exercise, and pain control with as little drugs as possible. Have you seen the pain toolkit? That might help a bit.

paintoolkit.org

Also before you go to your GP have a look at the RCGP EDS toolkit. That is what they should be working from, so if you are already familiar with that and they ignore you, you can say, 'but the toolkit produced by your Royal College says...'

rcgp.org.uk/clinical-and-re...

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Brilliant thanks for that advice very helpful to me ! It is getting worse so sounds like that’s what’s happening to me! I feel guilty when I rest but I know I need to listen to my body it’s hard to make family /husband realise I can’t help being this way and that I’m not just lazy or moaning I’m in pain!

Thanks for your reply

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👏👏👏👏🤗💗😘

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Aren't all those programs useless? They just tell you to stiffen your upper lip and get on with it. They just don't want people to go on effective pain relief that conveniently is illegal because that would ruin big pharma business.

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Does seem abit like that I just need some pain relief to get on and enjoy life pain free everything seems impossible 😞

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Sadly it does sem to get worse as we age and we get stiffer too. I use Butrans patches. i started at 5, then 10, and am now on 20. You wear them continuously and they take the edge off. i also take Oramorph, as well as p[aracetamol and ibuprofen throughout the day. Other medications gradually stopped working so I continue with these. I have tried CBD oil too but found not much relief. Homeopathy does help and has helped me in the past but you need to ask for funding on the NHS to get it. Physio made things worse. The best thing is to remain as mobile as possible and keep joints moving. Watch your weight and take vitmains and minerals. Check out as many supports as possible like Repose mattress topper and seat pad for pressure relief, as well as kinisthetic tape etc. Get your GP to send you toan Occupational therapist where they can make custom made supports and give you good advice, much better than a physio any day. Good luck.

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Thank you for your reply,any certain vitamins and minerals you recommend?

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Be extremely careful of supplements, they excipients found in many supplements are allergic triggers. Gluten is put into many pharmaceuticals and supplements. Compounded quercetin from a reputable source is allegedly helpful, as is luteolin, vitamin C (with exceptional uptake, not ascorbic acid).

I'm taking Hista-Aid by Quicksilver Scientific currently, it's got quercetin, luteolin, vitamin C and DIM. I have had no adverse reactions to it thus far and it's seemed to help with reducing reactions.

It's a new supplement and based off Dr Theo Theoharides recipe for Neuroprotek. Dr Theoharides has researched these flavonoids and claims they're helpful in stabilizing mast cells. Neuroprotek one of the other members said contains a bee product she can't use. I've made enquires about the source of flavonoids from the manufacturer, I'm awaiting their reply. I'm thankfully not having reactions with it. It's a liposomal sublingual delivery system and is the fastest into the blood stream in the world currently holding the patent on their nano technology for liposomal neutraceuticals.

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Yes, magnesium, turmeric, D3, Calcium, anything helps really!

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Hello - My GP referred me to a neurologist because of head and neck pain. They found a tremor so have put me on gabapentin. This hasn't helped the tremor, but does seem to have helped with fatigue and pain. I think requesting a referral to a neurologist is worthwhile. Good luck

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I found that for pain deep heat works quite well for me. I have the bubble bath and will sit in there for a good half an hr then get out and use the deep heat cream.

For the tieredness i use naps. For 2 days ill have a 1 hr nap every 3hrs and then i know im okay for a couple more days and repeat when its needed.

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