SearchFrequently asked questions about EDS and HSD
The journey to diagnosis for the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD) is often a long and complicated one. Poor awareness of the condition amongst medical professionals means that it can go undiagnosed and the management for those with a diagnosis is often not provided. For many people this means they have no option but to teach themselves over time how to control it in order to live full and active lives.
We have put together a list of frequently asked questions about EDS and HSD. The questions have been compiled based on the calls our adviceline receives every day. Please scroll down the page or use the quick links below to take you to a specific question.
The Adviceline (0800 907 8518) is open 09:00 – 15:00 on Tuesdays and Fridays only. Please only call during these hours. You can also email adviceline@ehlers-danlos.org and we will aim to get back to you within 5 working days. Our main office number (0800 246 1391) should only be used for all other enquiries and any advice line messages left on the answerphone will not be responded to.
Quick links to questions
Please click on the questions below to take you to the answer .
How does my child get diagnosed with hEDS or HSD?
What is the diagnostic pathway for rare types of EDS?
What do I ask my doctor for in terms of management?
What are common comorbidities?
Can I claim PIP with or without a diagnosis?
Does EDS UK provide support with benefit applications?
Do you provide advocacy services?
Do you provide mental health support?
What information does your adviceline provide?
What help is available for schools and universities?
What can I share with my employer to access support?
How do I complain about the NHS service I have received?
How do I complain about a private service?
If I disagree with a medical professional, can I get a second opinion?
How do I find out about a medicinal cannabis prescription?
I’m worried about injury. Is exercise safe if I have EDS or HSD?
Exercise can be incredibly beneficial for people with EDS and HSD, but it must be approached cautiously to avoid injury. Because EDS affects connective tissue which supports muscles and joints, certain exercises that cause repetitive strain or high impact on the joints – like high-intensity weightlifting, high impact exercises and contact sports – might increase the risk of injury.
Low-impact, strength-building exercises such as swimming, yoga, and Pilates are generally safer options, as they improve muscle tone and stability without over-stressing the joints.
Working with a physiotherapist who understands is highly recommended. They can design a tailored programme that focuses on strengthening the muscles surrounding the joints, which helps prevent dislocations and injuries.
Building core strength is particularly beneficial for stabilising the body.
Exercises should be slow, controlled, and focused on proper form to reduce strain on connective tissues.
How do I manage chronic pain associated with EDS or HSD?
Chronic pain in EDS or HSD can be complex, involving joints, muscles, and sometimes neuropathic pain.
Effective pain management typically requires a holistic approach.
Physiotherapy is often a cornerstone of treatment, aimed at strengthening muscles to support weak joints and improve stability.
Stretching exercises may help maintain flexibility without overextending joints.
Pain medications can provide relief, but long-term use of strong painkillers like opioids is discouraged due to the risks of tolerance and dependence.
Nonsteroidal anti-inflammatory drugs (NSAIDs), over-the-counter painkillers, and, in some cases, muscle relaxants or low-dose antidepressants for nerve pain might be prescribed.
Some people find complementary therapies such as acupuncture, chiropractic care, or massage therapy useful in managing pain.
Engaging in mindfulness, relaxation techniques, and pacing activities to avoid flare-ups are also key elements of managing day-to-day pain.
Some people find that warm water bottles can help relieve joint pain, and we often hear that TENS (transcutaneous electrical nerve stimulation) units work well for localised pain too.
Your GP can also make a referral to a local pain clinic.
What should I do if my joint dislocates frequently?
Here are the six key principles that I suggest you need to start utilising in order to begin to get a grip on managing the situation as opposed to the situation managing you. The main aims are to stay calm, keep on top of the pain and allow the muscles to relax. It takes lots of practice and patience, but it can be done.
Breathe
Use slow deep, relaxed breaths. Try using some relaxation techniques – there are lots of different ones out there. As painful as it is, and as difficult as it may sound, you need to start to try to take control of this situation. So start to learn how to breathe through it.
Use painkillers
Take some appropriate painkillers (analgesics) if you have some. However, note the word “appropriate”. You should only ever take analgesic according to the dosage indicated by your prescriber. Never take more than the suggested dose. You might feel like it may not be enough at the time, but if it can take some of the edge off, then that’s a great start. Please don’t ever overdose. What about Entonox (commonly known as gas and air) as pain relief? Some people have access to Entonox at home, or use it at A&E. There can be a role for it, but this must be used with caution. Prolonged use can lead to vitamin B12 deficiency and can interfere with DNA synthesis, not to mention cultivating a dependency, all of which are big issues.
Support the joint
You need to try to make yourself as comfortable as possible (I know it’s not easy). Use pillows or a sling if you have one. Find a comfortable resting position as much as possible. This allows the muscles to relax and stop spasming.
Try heat
Hot water bottles, wheat bags and a warm bath can all help to relax spasming and overactive muscles.
Distraction
Try to take your focus away from the pain and the situation. Listen to music, watch a film if you can, talk to friends/family, try a relaxation recording. This can be helpful as a short-term pain-relieving strategy. Again, it can help muscles relax.
Gentle massage
Sometimes gentle massage around the joint can help relax the muscles enough to be able to gently relocate the joint or for the joint to just slip back into place by itself.
What if it doesn’t go back?
Don’t expect the joint to go straight back in. It is often not unusual for joints to remain out of place for hours or even days. But once it’s out, it’s out. It’s not going out even more, so try not to panic.
Is it dangerous? Am I damaging my joint if it comes out?
It is highly unlikely. Your joint laxity allows for your ligaments and capsules to stretch. It is mostly just distressing as opposed to damaging.
When should you go to hospital or get help?
- If the limb starts to change colour due to a lack of blood supply.
- If your limb goes completely numb.
- If you have tried strategies 1-6 above, have waited a reasonable amount of time and are still desperately struggling.
But as mentioned earlier, it is not unusual for A&E to relocate your joint only for it to pop straight out again or when the anaesthetic wears off. Therefore, you need to learn to stay calm and to start to self-manage.
Are there any dietary changes that can help with EDS or HSD symptoms?
While there isn’t a specific diet tailored for EDS or HSD, some dietary approaches can help manage symptoms, especially if you experience gastrointestinal (GI) issues like irritable bowel syndrome (IBS), which are more common in EDS and HSD.
An anti-inflammatory diet rich in whole foods like fruits, vegetables, lean proteins, and healthy fats may reduce inflammation in the body and support overall joint and muscle health.
Omega-3 fatty acids from sources like fish or flaxseeds have been shown to have anti-inflammatory properties.
Staying hydrated is particularly important for those with EDS, as dehydration can worsen symptoms like joint pain and fatigue.
For people with gastrointestinal issues, diets low in FODMAPs (specific carbohydrates that can cause digestive discomfort) may alleviate symptoms.
Consulting a dietitian experienced in EDS or chronic conditions can help create a meal plan that supports your individual needs, including managing GI issues or food sensitivities.
How do I get diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) as an adult?
GPs are able to diagnose hEDS and HSD in adults, they can use the GP toolkit to do this, as it has a diagnostic criteria for hEDS with a scoring system to fill out.
Taking a list of your symptoms as well as a family history would be beneficial to help with an accurate diagnosis.
If you do not meet the needed score, it might mean you have HSD, and they should still be looking at management regardless of the diagnosis you receive.
Since 2021, rheumatology has rejected referrals for hypermobility and asked that GPs diagnose and oversee hypermobility patients. If your GP isn’t comfortable with diagnosing, a referral to rheumatology may be required. If this is rejected, please contact your local integrated care board and explain the situation to help with the referral process.
Please remember that rule-out testing is not conducted for hEDS patients but if your GP has any concerns about a rarer type, they can do a referral to genetics for this to be investigated.
After getting a diagnosis, it is important that symptoms are addressed appropriately, with action taken.
If you are in Scotland, Wales or Northern Ireland it can be difficult to get a referral over the border to England to see a specialist. Please consult with the board to get this pushed through and ask your local MP to help.
How does my child get diagnosed with hEDS or HSD?
In 2023 the diagnostic criteria for children changed (the paper can be found here). This means there are now eight different hypermobility types within pediatrics that a child could be diagnosed with. These can change as they mature, especially if they have more symptoms as they get older.
When they are biologically mature or reach the age of 18, the 2017 diagnostic criteria can then be used to diagnose hypermobile Ehlers-Danlos syndrome if the criteria are met. The GP will need to do a referral to pediatrics to look at diagnosis and management.
Children under the age of five are not usually diagnosed with hypermobility disorders as most children are hypermobile; this also reduces the risk of missing other conditions which may present as the child matures. However, management should be put in place as early as possible when issues are identified. For instance, if a child is experiencing pain and joint issues a physiotherapy referral should be made, or if they have flat feet, orthotics should also be referred to.
The most important aspect for children is management. Please do not hesitate to speak to your doctor about getting referrals placed to ensure areas that require attention are addressed. If the GP or pediatrician is worried about a rarer type of EDS, they can refer to genetics for this to be investigated.
What is the diagnostic pathway for rare types of EDS?
If you or a doctor suspect that you have one of the twelve rare types of EDS, the pathway taken is different from the hypermobility type. Your GP can refer you to local genetics, who are then able to refer on to either Sheffield Children’s Hospital EDS diagnostic centre (this sees adults as well) or Northwick Park diagnostic centre, depending on which is closer to you.
Not everyone who is referred to clinic will undergo genetic testing; it is only carried out when criteria are met for a rarer type or if there are signs of a different connective tissue disorder.
You can find more information in this article on genetic testing for the rare types of EDS. Please remember rule-out testing does not automatically occur after a diagnosis of hEDS; if you do not meet any criteria for a rarer type of EDS, the testing will not be carried out.
If you do receive a rare type of diagnosis, you will be supported by the clinic and management will be put in place.
If you are thinking about private genetic testing, please get in touch with the adviceline: adviceline@ehlers-danlos.org who will be able to answer any questions surrounding this.
What do I ask my doctor for in terms of management?
Management will be different for an individual depending on their symptoms or type of EDS or HSD. The usual management for someone with hEDS or HSD, for example, may include physiotherapy, OT, orthotics, and pain management; all of which can be referred to by your GP.
If you’re experiencing other issues such as gastro, urology or autonomic problems a referral to gastroenterology, urology or cardiology would be advisable. Usually, your GP will make a referral to local services. If they are unable to assist, a referral to an EDS-aware specialist may be required, and you can get in touch with the adviceline for assistance with this.
Self-management is often something a lot of individuals with EDS or HSD have to put in place. We have lots of suggestions to help manage your symptoms which can be found in our living with EDS section. There are also fantastic webinars with talks from professionals which can also be helpful when learning about what management would best suit your symptoms. These can be found on our webinar player.
Who oversees my care?
Your GP will oversee your care. If you do happen to be under rheumatology it is not unusual for you to be discharged after diagnosis, and often individuals end up overseeing their own care. We’re aware this is not ideal and would encourage support from the GP. You can send them to the GP toolkit to help them with overseeing your care.
What are common comorbidities?
Comorbidities are commonly occuring conditions in EDS or HSD, such as autonomic issues, gastrointestinal issues, mast cell activation disorders, and anxiety. Your doctor should look at support and management for these in addition to your EDS or HSD if you are struggling with symptoms. Not everyone with EDS or HSD will suffer with comorbidities, but you can find out more about the different types here.
Can I claim PIP with or without a diagnosis?
You do not have to have a diagnosis to claim PIP. PIP is based on the symptoms you’re experiencing and how they affect your day-to-day life. It is done on an individual basis rather than with regard to a specific condition. Many people with EDS or HSD do not meet the criteria for PIP and therefore would not be able to claim, but there are many who do.
Collecting as much evidence as possible – as well as impact statements from friends and family – can be helpful with your PIP application, to demonstrate the impact your symptoms are having. You can find out more about your eligibility for PIP here.
You can claim PIP even if you are working, and it often also entitles you to different benefits.
Does EDS UK provide support with benefit applications?
We are currently able to provide benefit guides to members of EDS UK through Benefits and Work. We can only provide the guides for those who have a current membership. You can sign up here for free. If you are already a member of EDS UK, please visit this page to see which guides are available, as well as the email address to contact for copies.
We cannot currently help with completing the forms, but would recommend contacting your local Citizens Advice who would be able to assist with this.
If you are not awarded PIP and believe this decision to be incorrect, visit this page to see which guides we have that may help with your appeal process.
Do you provide advocacy services?
We are currently not able to provide advocacy services. Please do check your local council website for suggested advocacy services in your area.
Do you provide mental health support?
We are not able to provide mental health support. Please contact your GP, emergency services on 999 or the Samaritans on 116 123 if you are having any struggles with your mental health. Additionally, you can text ‘shout’ to 85258 for 24/7 mental health support.
What information does your adviceline provide?
Our adviceline is open to everyone including non-members, carers, family, friends, and medical professionals. We can answer questions regarding diagnosis, management, comorbidities, benefits and more. Please don’t hesitate to get in touch if your question has not been answered on the website: 0800 907 8518 or adviceline@ehlers-danlos.org
What help is available for schools and universities?
Currently for schools we have our school toolkit: an excellent resource put together to advise schools on the best methods to support their students with EDS or HSD. This has information on the conditions themselves, reasonable adjustments, attendance, resources and more. We encourage the toolkit to be shared within the school for all who support your child.
We also have an infographic for students to give to their teachers and school/university.
UCAS has great advice on how to access support at university as well as advice on disabled student allowance. This can be found under advice and financial support on the UCAS website.
What can I share with my employer to access support?
This infographic provides an overview of EDS and HSD in the workplace, and suggestions for items and adjustments that can be implemented. If you are office-based or work from home, you may want to look into Access to Work, a government scheme which allows equipment adjustments to help with your work environment. Find out more here.
Additionally, you are entitled to reasonable adjustments within your workplace from your employer if you are struggling, and you can find out more here. We would also recommend asking your employer to look on the EDS UK website to find out more about the condition, so they have an understanding. Especially as EDS or HSD can fluctuate.
How do I complain about the NHS service I have received?
There are several steps to putting in a complaint about the service you may have received within the NHS.
GP: First speak to the practice manager to see if the issue can be resolved internally. If this is not successful, you can contact your local integrated care board (ICB). You can find your local board by using this link. If you are not happy with the result from speaking to the ICB you can escalate your complaint to the Parliamentary and Health Service Ombudsman – find out more here. You can also/instead contact the General Medical Council if you wish to escalate this complaint.
Hospital: You are always entitled to a second opinion; you can ask your GP to put through a referral for you to see someone else or contact PALS at the hospital to ask this to be put through. If you would like to put a complaint in you can do this through PALS, the board of the hospital or you can contact the ICB (mentioned above). If you wish to escalate this further you can speak to the Parliamentary Health Service Ombudsman (mentioned above). You can also/instead contact the General Medical Council if you wish to escalate this further.
You can also ask your local MP to assist with accessing appropriate care if you are not receiving it, to see if they can help with pushing through a referral or chasing a complaint.
If you’d like to complain about a dentist or other service under the NHS, you can also go down the ICB route and/or the General Medical Council.
How do I complain about a private service?
Putting in a complaint about a private service is different from the NHS. Your initial step would be to contact the manager of the service and ask what their complaints procedure is. The next step from here if the issue is not resolved would be to contact the Parliamentary Health Service Ombudsman.
In some instances, you may want to contact a solicitor, but this would be a personal preference.
If I disagree with a medical professional, can I get a second opinion?
You are always entitled to a second opinion; this can be requested through PALS or through your GP putting in another referral. Please remember that GPs are unable to refer out of their local trust. This might mean you are sometimes required to see local services first and then be referred on from there. Your GP can complete an individual funding form if they’d like this to be pushed through, to help get you referred out of area.
How do I find out about a medicinal cannabis prescription?
Medicinal cannabis prescriptions are legal in the UK. NHS prescriptions are very limited and only awarded to children and adults with severe and rare epilepsy, those having adverse effects to chemotherapy and individuals suffering from spasms and stiffness caused by MS. In the five years since medicinal cannabis has been made legal, only five prescriptions have been awarded. You can see more about the NHS’s information on medicinal cannabis prescriptions here.
You can get a private prescription for medicinal cannabis through clinics. Please research clinics beforehand to find one that is appropriate for you. The doctors will work with you to find a suitable prescription which gets reviewed when required. It is usually prescribed to be vaped or used as an oil (you cannot smoke a medicinal cannabis prescription product or grow your own plant at home). You can find out more surrounding the laws of medicinal cannabis here.