Undiagnosed and rare conditions
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Hypermobility disorder problems...and I have no support

I'm having one of those days where pain has been there for a while and it starts affecting me emotionally and now I can't stop crying. I have no support for my hypermobility disorder (whether its HSD or hEDS I don't know yet). And now a tendon/bone? I don't know what it is that is just below the kneecap is having shooting pains whenever I put weight on it so now I can't walk. That particular thing has never happened before so now I'm scared I subluxed/dislocated something. And my neck and back are doing their usual thing, especially my neck tendons and soft tissues, leading to muscle pain too. I know my neck is way too flexible so I always get spinal joint pain and in the cartilage/tissues around it all down my back. I have no coping mechanisms because hospital was being difficult and complicated. And then covid hit so now I can't see a rheum or even physio if that's easier to get a hold of. Sso I don't have anyone to help me. I don't know what I'm expecting by telling anyone, I guess I'm just scared and tired and overwhelmed


  • katho31katho31 Posts: 694 Member
    Hello @Francis_theythem, so very sorry about your problems and pain, you may have spasms? i have a lot of trouble with osteoarthritis and below the knee clicks and cant put any weight on them, with your neck and spinal pain its similar to fibromyalgia and is excruciating, having lax ligaments is awful, i really think if you contact you gp on monday, or out of hours gp's this evening they may offer some help? im not a medical person, but others on here may offer some links/info, do hope you have at least some pain relief for your conditions? best wishes x
  • OxonladyOxonlady Member Posts: 413 Pioneering
    Francis_theythem, Sorry to hear that you are in pain. Chronic pain unfortunately can affect people emotionally and psychologically. I remember times of excruciating pain and becoming fearful because my body seemed to be my worst enemy. So I do sympathise. You need a proper diagnosis of course, you need a referral to a pain clinic if you don't already have one.
    Also, there is a charity in Borehamwood, Herts, called the Ehlers - Danlos Support UK. They can support with connective tissue disorders and hypermobility syndrome. Their helpline is 08009078518. Enquiries line is 02087365604. I hope you find them helpful. 
    I hope you feel better soon. It's great that you are reaching out to the group. 

  • Francis_theythemFrancis_theythem Member Posts: 120 Pioneering
    Unfortunately I was denied any pain meds for my ME so I don't have anything except my heat packs which tend to ease my back and neck quite a bit. On the positive side, it has improved a bit and I can stretch my leg out a bit more (as opposed to having it stuck in one place). I did try to go through nhs to see rheumatology but it got really complicated, they made admin errors between gp surgery, e-referrals team and then the hospital who then deleted me off their system... then covid hit so I haven't been able to see anyone or get an appt. I'm even willing to go private by this point. It's so stressful. I'm going to send an email to my surgery tomorrow which they will forward to my GP - hopefully I'll get a phone appt from them some point. Oooh I'll have a look at them and contact them - thank you for that oxonlady.
  • OxonladyOxonlady Member Posts: 413 Pioneering
    Francis_theythem, you are welcome. I also have ME and Fibromyalgia, among other conditions. You may be able to get some advice from the ME Association and Action for ME as well. It's important to have some helplines you can ring when you need to talk or just need some reassurance.
    In terms of pain relief, I'm allergic to a lot of pain killers, including paracetamol and codeine. The only analgesic I can tolerate is Ibuprofen slow-release 800 ml, which can be taken twice a day. I would not recommend taking the fast-acting Ibuprofen, it can cause stomach pain. I hope this information helps. Wishing you all the best. 
  • katho31katho31 Posts: 694 Member
    Hi @Francis_theythem, when you speak to your gp ask for another referral for rheumatologist, i had few difficulties before christmas just bit of confusion between hospital and doc, anyway i got appointment dec 23rd think it was, she sent me for mri i then returned to see her, Dr Dawson at st helens hospital, merseyside, she was so kind and informative, i was told i had fybromyalgia, think ive had it many years but kept putting it off and helping others ect, she put me on Amitriptyline 25mg, they make you bit drowsy, but do help myself. again this is just my situation, im not a medical person. best wishes and take care  :)
  • chiariedschiarieds Community Co-Production Group Posts: 9,276 Disability Gamechanger
    Hi @Francis_theythem - I have hEDS so have some understanding. As @Oxonlady suggests, do contact Ehlers-Danlos Support UK: https://www.ehlers-danlos.org/ as they help people with both EDS & HSD. There's a lot of info there, but in case you don't find it, I'd like to specifically mention this page which is the GPs Toolkit. Please see: https://www.rcgp.org.uk/eds  which may help both you, & your GP.
    For pain management, see links from the Physiotherapy Pain Association: https://ppa.csp.org.uk/content/links
    And also try this: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf       which I used to teach in relaxation classes when I worked as a physio, & something I feel also helps combat stress, which can cause more pain. I hope some of this may help. :)

  • Francis_theythemFrancis_theythem Member Posts: 120 Pioneering
    @chiarieds I found the abdominal breating exercise really help! Is there any other relaxation technique I should be doing? I feel like I was definitely causing more pain than I already have and it helped a lot in reducing that. It made me unintentionally fall asleep for many hours too... I never really considered proper pain management before, esp as I don't want to just be pushed into taking more meds but now I think it'd probably be something I'd benefit from if it's not just that.
    PPA looks like it might help also. Fortunately my knee seems to have pretty much sorted itself out, though i think it's still a little unstable - but it feels like its gone back and the pain has stopped. My neck and spine pain are still bad though. Also apparently now my gastro symptoms are flaring so now I can't eat solid food anymore... back on complan etc. :/ But thank you for the things on pain, they really helped 
  • chiariedschiarieds Community Co-Production Group Posts: 9,276 Disability Gamechanger
    edited July 2020
    Hi @Francis_theythem - So pleased the abdominal breathing exercise helped you. Personally, I find this the most helpful relaxation exercise. I also concentrate on doing such breathing every night to get to sleep.
    I've tried all sorts of different meds, & have learnt some things along the way. Non-steroidal anti-inflammatory meds such as Ibuprofen tend not to work in those with EDS. I tried amitriptyline, but found it lowered my already low blood pressure, which didn't help me one bit. My current GP has gone so far as to state in a supportive letter when I was initially claiming PIP, that pain medication is largely ineffective in those with EDS. Personally I would tend to agree. I do take Pregabalin, but that's for the neurological pain I also have, & it does 'dampen' that down a little.
    So, I'm left 'coping' with chronic pain. I also do gentle exercises daily, use mindfulness, distraction & visualisations.
    The only other thing I've found really helpful is cannabidiol (CBD). I had hoped it would help with my neurological pain, which unfortunately it didn't. However, it has helped with some of my EDS pain, & I seem to have had fewer subluxations since starting this nearly 2 years ago. If you would like to know more about CBD, & a good place to buy this from online do say.
    Pleased your knee is now behaving itself, tho sorry you still have pain in your neck & spine, as well as a flare of your gastro symptoms.
    I also hope the PPA links may be helpful. :)

  • Francis_theythemFrancis_theythem Member Posts: 120 Pioneering
    @chiarieds I really want to try some things that might help my spine pain. NSAIDs don't touch it, and I don't have any pain relief. I seem to have nerve and muscular and ligament pain outside my spine, which goes into my neck, and nerve on my spine and in between my vertebrae. It hurts so much >< I don't know if CBD oil would help with that but I'd like to know about it to see if it might. 

    Also, do exercises really help? I get the impression that my spine and neck are too weak/flexible/idk and it would just make it worse...
  • chiariedschiarieds Community Co-Production Group Posts: 9,276 Disability Gamechanger
    edited July 2020
    Hi @Francis_theythem - working as a physio, I saw that exercise helped. From a personal point of view, now on the 'other side of the fence', so to speak, as a sufferer, I know it helps me.
    With EDS, unfortunately, there are problems with our connective tissue (literally those supportive structures that hold us together, mainly collagen). Collagen is found in nearly every part of the body from your eyes to your gut, & is defective in EDS, so it certainly does affect ligaments & muscles amongst other things.
    Exercise helps build up core strength & may help. No-one knows why for sure, but males don't seem to be as badly affected by EDS as females. One theory is that their stronger musculature helps protect them. My son took up weightlifting (& an increase in calorie intake) a few years ago, which helped him for a while. Must admit he had to stop due to problems with one shoulder, however his physique changed from a very thin, underweight young man, to someone who looks 'more normal' with a very obvious increase in his musculature. He used to have problems with his neck too, so much so that he spent his 2nd year of Uni mainly at home.
    So, I would say appropriate exercise can help, tho it will never cure in those of us with EDS.
    As far as CBD goes, I would recommend this: https://www.simply-cbd.co.uk/product/simplycbd-green-10ml-30ml/
    CBD has been found to help with anxiety, depression & pain in particular. This company is ethical, provides lab certification as to the quality of their product & is reasonably priced. This green oil seems to particularly help with pain due to an additional component, i.e. CBDa.
    In my own case I hoped it would help with my neurological pain, which is worse than the pain EDS causes. It didn't, but the lower back pain I've had since a teen disappeared, which I hadn't even thought about as I was so used to it being there.
    It's important to start CBD slowly....you take 1 drop 3 times a day for a week; 2 drops 3 times a day the 2nd week; 3 drops 3 times a day the third week, increasing another drop 3 times a day for each subsequent week if needed. If you start to feel worse, you drop back down to the last dosage that helped. Everyone is different; I felt an improvement half way through the 2nd week, for some it can take 8 weeks or more.
    If you take any meds, it's really important to leave a 4 hour gap between taking them & CBD, as more than 90% of meds are broken down in the liver at the same site as CBD. I don't think this is your case, but, if it is, it's something best discussed with a pharmacist ideally, or your GP.
    Sorry if this sounds complicated, but I'd like to ensure you could take CBD safely. The other thing is CBD is only effective for 4-6 hours, which is why ideally you would take it 3 times a day; if this isn't possible, twice a day may also be effective
    My apologies for such a lengthy response, but I have researched CBD quite a bit too, & some don't find it as effective as it might hopefully be as they've tried it, but didn't know the strength they should buy, or where from,  & to start it slowly & build up gradually.

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