Ehlers-Danlos Support UK
1,525 members489 posts

Coping

I got diagnosed earlier this year and i'm a 21 year old guy. I started to get affected when I was 19 with TMJ suddenly appearing , I don't seem to have hypermobility in all of my joints, but it particularly affects my traps and my calves.

I just had a couple of worries and questions that I constantly forget to ask my GP or physiotherapist.

Is there a specific diet that I should be aiming for that could help maintain me as opposed to the current general healthy diet? Like should I be avoiding certain things like alcohol and caffeine

Then I'd like to ask, is there any chance that I can improve it overtime through exercise and stretching?

And will this be possibly a massive health risk for me in the future if not properly maintained?

7 Replies
oldestnewest

Hi, I have EDS and hypermobility, and as a result I also have gastroparesis. I have TMJ and the pain is there all of the time. The only things that I can suggest as regards diet (I have a very limited liquid diet as I have a stomach venting tube and a paralysed stomach , so only weight 5 and a half stone), is eating things which don't require a lot of chewing as this can make TMJ worse, even though at the time it may not cause pain, afterwards you get responsive pain. TMJ doesn't really respond to diet specifics but eating protein will help with the muscle which supports your jawbone and maintaining ahealthy diet will help your general health and help to fight off negaitive feelings. I hope this helps. i wish you luck.

1 like
Reply

Hi, I have been reading a lot lately about low histamine diet which is said to help with eds, and its comorbidities POTS and mast cell problems. I know certain foods increase my pain and these same foods are listed aa high histamine. There's quite a lot out there on it.

1 like
Reply

Hi and welcome. You don't say what your diagnosis is? I am guessing from what you say that it might be Hypermobility spectrum disorder or Hypermobility EDS? It is recommended that physiotherapy is done for these conditions. But it should be with a trained therapist who is familiar with how these conditions should be treated. It is important not to damage, or worsen weak joints but to strengthen others.There are other implements such as splints if needed, and also orthotics from a podiatrist that may be beneficial for you?. There are diets that some people find helpful depending on what symptoms they are suffering with.These are often because of bowel related issues or autonomic dysfunction conditions inc' POTS. I have a gluten-free diet because of food sensitivities and find it has eliminated persistent 'brain fog'. Vitamin D is recommended, and there will be others that are of benefit. I am presently deficient in folate and take prescribed folic-acid which was detected only after a series of blood tests were requested by a specialist.

My son is 21. He also suffers with particularly painful TMJ and goes to the Maxiilo facial department - your regular dentist can refer you-. He and I have both been diagnosed with hEDS, - an hereditary disorder of connective tissue-.. After many years of seeing different doctors with various chronic symptoms, I did research, and recieved all my help and support from here. I discovered few specialists can diagnose these conditions, so we went to see Dr Hakim in London who is one of the top UK specialists in hypermobility and EDS. He has since recommended investigations for associated heart, autonomic dysfunction, bowel and bladder related conditions and problems. Also physio for management, orthotics and splints.

Because these conditions are rare -underdiagnosed- it means GP's and other specialist consultants, are often unfamiliar with them and all the many body system problems, and associated conditions that can come with it. You should learn all you can about your condition so that you can guide your Doctor and those professionals' involved in your care, now and in the future.

Everyone is affected differently and not all management/ treatment will be appropriate or suitable for you. Having a specialist rheumatologist will help to advise and direct your own GP as to treatments and the management you may need. Having this condition means you have to become the expert and be pro active in managing your condition, and be able to educate medical professionals in order to receive any appropriate treatment and care.

We are here to support one another and happy to help you.. My son is a member of the EDSuk Facebook groups and very happy to chat with you if you would like to - cumbria and Northwest-.There is a fee to become a member of EDSuk but this is soon - if not already- to be free.You can also get information, and the HMSA - hypermobility syndromes association- also has lots of information, help and advice. Best wishes 🙂 xx

2 likes
Reply

Hi and welcome,

There is no specific diet but I follow a low carb diet for other reasons, and find that the combination of low carb (not no-carb), high protein and high-ish fat seems to help my general body condition. Cut your steaks up small or go for another source of protein so as not to make your TMJ worse.

I recommend weight training rather than general exercise - it will strengthen your joints and reduce the chances of future dislocations and sprains. If I was your age I would get a knowledgeable physio or a personal trainer and really work hard on strength. There is information on hEDS and HCD out there for physios and PTs.

On your last point - maybe and maybe not. My pain started with a sharp stabbing pain and aches in my pelvis at exactly the same age as you, and has slowly moved on to a condition where by 45 almost everything in my body was affected and I was in constant pain - I think it peaked at 45 (or at least I hope it did!). On the other hand, my mother has just a couple of symptoms but nothing too bad; virtually no pain and no fatigue. My niece shows some signs but is younger than you so I don't know where she is heading. Generally, it gets worse. It can be so slow though that you barely notice, which is what I had. At this point you could plan for the worst and hope for the best. I believe there is a study somewhere which shows that men tend not to have the condition as badly as women do, perhaps because they maintain stronger muscle tone.

I have TMJ too. Avoid careers involving singing or shouting!

1 like
Reply

Yeah I heard working on strength is more beneficial too, I have been inactive for a few years which what I believe to have actually given me worse symptoms than should be. I go to the gym, but it's hard on my shoulders which are the worst affected for me (amplified by sitting at a computer for so long i guess). I think one of the most important things is state of mind, but I struggle as my family are terrible and cause stress at every corner.

I honestly hope mine has peaked now, I hate being awake it's just pain. Luckily I don't dislocate or sprain too easy, and if I feel a bit of bite when exercising I stop immediately.

Reply

Hello - just wanted to say try not to fear the worst. These syndromes are so complex and so variable that everyone is affected differently. The most important thing I think is to maintain your muscle strength and your stamina, and to try to get the very best out of life that you can. Pace yourself and don't beat yourself up if you struggle with fatigue or pain. In terms of TMJ you could consider getting your bite assessed by a good dentist. This can help a lot with pain, and help to protect your teeth in the long term. I wish you all the best and hope things go well for you.

1 like
Reply

Do not stretch your joints. We are already stretched. Caffeine and alcohol only makes my pain worse. Organic green tea with tumeric and ginger helps keep down inflammation. I eat organic as much as possible. Stay away from gluten. Organic hemp oil daily for inflammation. Need to build muscle for joint support. Watch your vitamin d level. Edsers have tendency to deplete vitamin d. Junk food increases irritable bowel syndrome. This is just a little of what I do to help myself. Try and stay away from benzo and narcotics. Once you are on them u will catch he'll getting off. In the end they only make things worse. I been there. God Bless.

1 like
Reply

You may also like...