March this year I was diagnosed with benign hyper mobility syndrome, I scored 7/9 on the Beighton test, never refered to physio, my dad works alongside physios and they printed out some exercises to do at home, I don’t do them all only a few.
I struggle everyday with some kind of pain, it can differ in serverity, I feel it in my knees and elbows everyday, my elbows crack a lot sometimes painful and runs down my arm into my middle finger, some days I can’t even put my socks and shoes on or put my hair up for work due to pain and stiffness and end up in tears.
Recently I’ve started with dull achy pain in my collarbone and just above my wrists, sometimes in my middle fingers, again can differ in serverity. Today has been the worst for pain in my collar bone (can’t really describe the pain) which makes me think there’s more to me than just hypermobility syndrome??
I have just had 9 days off from work and today is my 3rd day back which I think is why I feel a lot of pain at the minute. I usually do 9/10hours a day with a 30 minute break and whatever office time I can get. I am a food and beverage supervisor in a hotel so my job can be very demanding at times, I do struggle with pain and push myself to get through each day, a soak in a hot bath seems to help but I struggle to get in and out the bath and don’t have a shower facility!
Ive been taking 1 ibuprofen before bed and it seems to help me sleep and seems to help me wake up to less and bearable stiffness and pain, but is it safe to take ibuprofen everyday?
I’m finding it difficult to find information and pain relief on the web, and even to relate to anyone Hope I can relate to someone out there??
Thank you!!
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Crazycatlady_101
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Hi crazycatlady_101 sorry your feeling these pains, it's not easy. I too had the same score as u 7/9, I got diagnosed at the same time with fibromyalgia too so I can never pin point what pain is from.. I've had collarbone pain, knee pain finger pain also.
One thing I'm sure of that it's not recommended to take ibrpufen for long periods without something to protect your stomach.. My doctor told me to try paracetamol and ibrpufen (which don't work for me) but also perscribed some tablets to take to protect my stomach from ibrpufen..
There are some good natural creams and gels out there if u ask your doctor about them. I'm newly diagnosed so still trying to find what works etc which isn't easy..
Before being diagnosed and waiting weeks and months for doctors appointments I did use google to look for pain relief and help and most of my symptoms would match fibromyalgia symptoms!
I was quite happy to finally have a diagnosis (hms) but now the aches and pains in tender spots are stronger and more frequent and makes me wonder if I’ve been misdiagnosed!
I think it’s a trip back to the doctors see what they can do to help!
My son takes paracetamol and ibuprofen before bed, but has something to eat with it to protect his stomach.
It sounds like some of the problems you are having with your arms and hands might also be down to your neck. When I had problems with my hands a physio blamed breastfeeding because she couldn't get the magic machine (it was in the days of just sitting people under an ultrasound machine then blaming the patient when they didn't improve. Turned out there was no evidence that US improved anything!) to cure me. In the end I had a friend who was a physio who did an assessment and she said that although the neck might not be causing the problems in my hand, until the neck was sorted out the hand wouldn't get better. the problem is, all these muscles are related to each other!
so I took myself off to an osteopath and it was brilliant. I need to see him every year or so just to keep things from getting too bad.
As for other types of pain relief, have you found this website? paintoolkit.org
I think my job is having a big impact on my muscles at the moment, I’m a food and beverage supervisor in a hotel which can be very demanding, I’m on my feet all day, I usually do 10 hour shifts with 30 minute break, I can carry a lot of heavy trays and plates etc
A co worker has been doing this job for 19 years and I’ve seen how she struggles with the wears and tears, she’s had problems with her neck and back etc
I’ve made an appointment at the drs today but I don’t know if to ask for something for my pain or be referred to the rheumatologist again.
I wonder if you are over extending your joints every day, when I was diagnosed I was shown exactly what I was doing wrong with my knees, elbows etc and how I can make improvements in not over extending. For instance I used to flick my knees backwards, it's what I had done all of my life, all my joints had obviously had enough and I was in unbelievable pain and discomfort, I did the same with my elbows too, I was advised to consider walking making a tiny adjustment in slightly bending my knee as I walked, it felt awkward at first and it was hardly any difference when I looked in the mirror, I really had to concentrate but eventually I got there, now I don't have to think about it and the only time I overextend is if I am rushing around or forget to put a cushion/pillow under my knees when I am putting my legs straight out why lying down or with my feet up. For my elbows I was told to look at how I carried things, like shopping bags, using a wheelbarrow, I would full extent my arms and flick the inside of my elbows forward, the same thing was advised to try and use my arms with a slight bend in the elbow, this has worked too and the only time I overextend is if the shopping bags are too heavy. It takes lots of concentration and practice but has worked for me.
Regards to you neck and should again consider how you are holding yourself, look in the mirror, a physio therapist said to me one day did I realise how I wss standing and walking, with my shoulders rounded and forward, sunken into my waist, she stood next to me and showed me how I look and said stand up taller out of your waist, stick your bottom out slightly and you, put your shoulders back slightly and you chest out, I thought I was going to look like I was sticking my boobs and bum out loads but I looked much better and it helped with my pain in my waist, I would sit and stand sunked into my waist, she said to wriggle out of my waist 😊
I use voltoral gel on areas where I have issues. I would suggest that you go back to your GP and explain everything you have mentioned here and ask for some medication to help, explain how this is affecting you job and quality of life and also ask for a referral to physio so you can properly be advised on how to improve your placement of your limbs and make sure you are doing any exercises correctly because it is so very easy to do exercises and over extend making these exercises hurt your body instead of help.
Sorry to hear of your struggles. Pacing is one of the most important and hardest things to get to grips with and your job isn't helping. However as gillian discussed proprioception and Physio are most important in helping you manage your symptoms. You need stronger muscles to support your joints because your ligaments do not and it greatly eases your pain levels. If I miss too many days of exercises then I become so sore! I can't stress how important it is to get the help of a physio with experience in hypermobility. And to become aware of the positions of your joints. Keep checking where your limbs are, how you are holding things and brace yourself if you have to lift etc. Strengthening your glutes will help your back, strengthening your vmo muscles will protect your knees for instance. When you do the exercises do them consciously, with purpose, squeeze and grip the muscles and then learn how to switch them off so you aren't permanently in tension. For pain, personally I couldn't never take anti inflammatories, gave me mouth ulcers and I value my bones and brain too much to take ppi meds permanently - they block the absorption of vit B12 by the stomach. I used heat pads or ice packs for muscle pain and paracetamol for bone pain (it has been found to be more effective than anti inflammatories). I also used magnesium spray and Epsom salts baths for muscle pain and tension and took magnesium 400mg at night. When it was really bad I used cbd oil for a while that was really helpful but I find I rarely need any of that now because the physio has made me stronger. I progressed from isometric exercises to pilates with weights and resistance bands. I also found that certain foods caused inflammation, grains, dairy, sugar so I follow an anti inflammatory diet and add turmeric and ginger to cooking, lots of green veg. I was diagnosedbwith hEDS at 54 and the last 2 years have gradually got to grips with all of my symptoms after having lost 1.5 stones and developed arthritis and osteopenia with a lifetime of pain, fatigue and digestive difficulties. You can get better than you are now. It takes a while but slowly and carefully it can be done.
Oh and to add something I remembered as I went to bed last night! Fluids! I cannot stress enough the need to be well hydrated, it helps enormously with muscular pain. My physio and specialist recommended at least 2 electrolyte drinks a day, more if it is hot or you are physically active like at work which I suspect you will be. And 2-3 litres of non caffeinated fluids. You need to be taking enough salt to retain this fluid otherwise it will pass straight through and you will be diluting important electrolytes. We all need 6g of salt a day unless you are getting it from ready meals - not great, or have high blood pressure. I use himalayan pink salt as it has important minerals.
Your description of everyday pain is not uncommon. Everyone is different and one size doesn't fit all but I can tell you what worked for me and maybe it'll help you too.
Last October I was diagnosed with JHS by a Rheumatologist who referred me to an Occupational Therapist to help me with the loss of strength and chronic pain in my hands. The OT referred me to a Physiotherapist to look at giving me an exercise programme to strengthen my back, neck, hips, legs. I am still waiting on this appointment 7 months later. So in the mean while I have been researching as much as I can myself to get some solutions that work. Some days I was in so much pain I couldn't get up the stairs and other times my hips and feet would be in so much pain I couldn't sit or lie down. My hips partially dislocate regularly and it seems some of the bones in my feet do too. I have regular headaches from back and neck strain and have had what the Rheumatologist told me was tendinitis in my left arm and shoulder for over 10yrs now which apparently never fully heals and gets damage again and again.
I have changed over to organic food wherever possible. I know it is expensive but it is worth it. I have cut out all processed meats and all pork products and only buying organic meat. I am eating a lot less of it, but it is better quality and without the chemicals which mess up your gut. I have been gluten-free for many years because of my gut problems. I have been making my own kefir and have been mixing it with live organic yoghurt and organic fruit to help heal my gut.
After reading that JHS suffers have poor proprioception awareness I have made a conscious effort to be aware of my body position and posture (which believe it or not really really impacts your pain levels). I was not aware my posture had become bad or that I wasn't aware of the position of my feet when I was sitting or standing. I wasn't aware that my ring fingers and little fingers stick out to the side when I am doing any thing with my hands putting strain on my knuckle joints and causing pain. That I hold my shoulders & head too far forward putting strain on my neck and back constantly. It was only after I asked others to have a look at the way I was holding myself and let me know what I was doing wrong that I became aware.
In the last 3 months I have started taking Wellwoman Original suppliments. They include evening primrose and starflower oil as well as a load of B vits, Vit D3 and minerals... I take a double dose each day and I can say that this has made such a difference to my pain levels. Apparently hormones play a big part in flare-ups so trying to get them balanced has really impacted my pain levels. I am not pain free, but the level of pain is far far less than it had been for the previous 3 years.
I have been diagnosed with JHS but my rheumatologist said if I'd seen anyone else it would have been hEDS. The only reason she didn't give me the diagnosis is because she doesn't like it and feels hEDS isn't a serious condition of all the subtypes 🙄
I take duloxetine (neuropathic painkiller), codeine and paracetamol. I use CBD oil, lidocain patches and heat patches and hot baths. I also struggle getting in and out of the bath buy have boughts some suction grab rails (as I'm in rented house) and a swedish bath rail which is free standing but connects to the bath. Hot tubs/spas are also good for the pain although I can't afford one - if there is one at the hotel which you could access off duty it might be worth considering?
One way to help may be pacing and grading if you can. I know you probably won't be able to take extra breaks but you could spend an hour doing something physical then an hour social (serving/engaging with customers) then and hour mental (on the till) so your using different types of energy?
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Hope I can relate to someone out there?? 
x
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