Hypermobility

[tamccart]

Thank you for accepting me on to your forum. My daughter has just been diagnosed with Hypermobility at 20. She has been offered physio and is coping well with her condition considering but is finding sleeping very hard and tosses and turns all night to get pain relief and ease her joints and spine. She has been offered no medication. We have bought a 9ft pillow which is a great help. Do any of you fellow sufferers have any more tips for her to enjoy a comfortable and relaxing sleep. Thank you.

[Yassytina FMA UK Volunteer]

Hello and welcome too the forum, not for sleeping threw the night as such but I’ve a Vshaped pillow I put in front of my other bed pillows if I want too sit up more in bed and rest, Ive just brought a long hot water bottle off the internet and can wrap that around as warmth helps the aches. Can she get into the bath for a soak ? I always say here I’m never without a supply of Epsom salts (and buy a few more bags when I see them on offer ) if I sometimes I skip my bath when my Chronic fatigue is bad I always notice the difference the next day, the aches seem worse. Has your daughter Fibromaylia as well as you’ve posted on here ?,take care x

[tamccart in reply to Yassytina]

Hi Yassytina thank you so much for taking the time to reply. My daughter hasn't been diagnosed with Fybromyalgia but she is constantly fatigued and heavy limbed, I have fybro and do wonder if she has it, but it is a difficult one to diagnose. It has taken us 6 years to finally get some diagnosis. Interesting re Epsom salt baths, I think I may take that on board as well and stock up. The advice I'm gathering is to surround herself with different size pillows and avoid memory foam. Kind regards Tamccart

[Eve17 in reply to tamccart]

While I was pregnant ( which causes even more hypermobility due to the hormones) I’ve got a full body pregnancy pillow and then read about all the benefits it has. So have been using it (and my husband as well ) after. Worth looking into it. It helps align the knees and hip in a position that avoids pain.

[honeybug]

Welcome tamcart 😊🌿🌸🦋

I’m sooooo sorry to hear about your daughter’s suffering.

I’m across the pond but the condition is still the same with varying levels of severity. I’ve known about my hyper mobility since age 5 when I was taking ballet and tap lessons. I didn’t last very long in tap dance as you had to have controlled movements to complete each step. Dancing stopped to my dismay.

I went on to suffer recurring sprain injuries eventually fractures of my fingers and toe and foot.

My hyper mobility has advanced to not being able to sleep or sit anywhere other than my wheeledchair ( office chair).

I’m now 73 and suffer exponentially when I even try to just lay on top of my bed now.

Here is what I’ve done in my past/better EDs times :

Use firm support pillows for head (side sleeper)

Against back regular size pillow to wedge to prevent rolling backwards

2 thick kingsize pillows for my lower back/ hips/knees/ankles = from crotch to toes length.

Firm support pillow for under arm pit for arm to drape over while resting it against my upper chest

Support pillow for my opposite arm from elbow to fingertips

In all I used 8 - 9 pillows to sleep.

Whenever I needed to change sides I had to wake up and remove all pillows repositioning my body to the other side replacing the pillows in same positions. This routine worked great for years until I was injured by my physical therapist…( unbeknownst to either of us I had scoliosis in my neck and my back so I do not blame my therapist at all. She was a very specialized therapist who never would have done the maneuvering on that last fated day if she/we had only known then).

I have used Aspercreme lotion with lidocaine on my back and other areas for pain but too much even applied to the skin can cause overdosing.

A consult with your GP/specialist regarding an oral pain relief is best. Beware not to scare you but educate you…long term NSAIDs/aspirin etc. can result in peptic ulcer disease which I was diagnosed with in 2022 after 51 years of aspirin therapy for my heart. Taking pain meds short term until the inflammation is tamped down and joints are less/not sore is best.

I’ve been on Gabapentin for my serious nerve pain and I really believe it has helped with my EDs too.

Also if soaking in warm Epsom Salts is possible before bedtime this helps with soreness and aching. Cannot do this anymore either.

Other members will help too but feel free to contact me if you have any questions glad to help.

Again so sorry about her suffering.

Hugs healing kisses and much love and prayers.

Honeybug aka EJ

😊🤗♥️🥰🙏🕊🌿🌸🦋

PS I also use firm pillows under my arms to sit on chairs and other furniture It helps support the back and upper torso

It’s not wise to sit on chairs that slope backwards and extent outward with feet and ankles unsupported causes damage to connective tissues in the ankles

[tamccart in reply to honeybug]

Hi Honeybug so lovely to get a reply from across the pond. I thank you for taking the time to give advice for my daughter. I am sorry to hear you have been suffering for so long. My daughters pillow collection at bed time is increasing and seems to aid comfort, but do agree her GP should be advising her more, we are setting an appt ASAP. I have heard about the long term damage NSAIDS/ASPRIN can do. Will definitely advise her to take the Epsom salt baths and I think I will try too as I have Fybromyalgia. When we saw the Rheum Consultant she said as you age your joints naturally stiffen up and you will feel better! I don't think so for Hypermobility sufferers.Thank you once again for caring and helping

Tamccart

[Blue-52]

hi, welcome to HU,

I have hyper mobility too, it’s very hard to get comfortable, the things I have done is, a comfortable mattress, nothing too hard, definitely not memory foam, I found a sprung mattress helps, no dips, but, your daughter will need padding, depending on where the pressure and pain is, triangle pillows, long pillows, long heated hot water bottle, electric blanket, heat can help, but she needs things to take the pressure off, while she is laying down, it’s trial and error to find what makes you comfortable , also she needs to have a chat with her doctor, she will need some help with pain management, physio can only do so much, and sometimes it can make us worse, on bad days, get her to discuss some pain meds with her doctor, something that she can manage, but not put a restriction on her ability to try and have a life, I didn’t know that mine started in my 20’s to, along side neck and spine damage, slowly deteriorating.

I wish her all the best and luck.

[honeybug in reply to Blue-52]

great post sweetie. All good advice.

Sending you love hugs and prayers my precious T.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋🥢🥢🥢🥢🥢

[Blue-52 in reply to honeybug]

Thank you my darling.

Sending you lots of love and prayers and hugs.

🥢🥢🥢🥢🥰🥰🤗🤗🤗🤗

[honeybug in reply to Blue-52]

thank you lovely ♥️

[Blue-52 in reply to honeybug]

💖💖

[honeybug in reply to Blue-52]

My hubby is having skin MOHS cancer surgery now. Will check back with you once he’s recovered sweetie. Luv ya 😍

[Blue-52 in reply to honeybug]

Ahh bless him, I hope everything goes well.

Luv ya too hun

💖🥰🥢🤗🤗🤗

[honeybug in reply to Blue-52]

morning lovely 🥰♥️🤗🌿🌸🦋

Yes he’s officially cancer free in that spot (the right temple area) took 5 hours and three surgeries to get it all. He’s in bed sleeping but he is due for pain meds soon. He won’t be able to wear his glasses all the time. Taking it extremely well as he said better to suffer pain than terminal cancer…I agree!!!! Thanks for your support hun. My bestie /BFF 😍🤗♥️🥰🙏🕊🌿🌸🦋🥢🥢🥢🥢🥢🥢🥢🥢

[Blue-52 in reply to honeybug]

Sorry hun, have M home with a bug 🐛

I’m glad it’s all clear thank goodness, I hope it’s not too painful for him, always here bff.

Take care sweetie ❤️ 🥢🥰🤗🤗🤗

[honeybug in reply to Blue-52]

Oh NOOOOOOO…I just said a special prayer for you both. Give him my get well soon wishes and my love to you both bff. 🤗♥️🥰🙏🕊🥢🥢🥢🥢🥢🥢🥢

[Blue-52 in reply to honeybug]

Ta luv 🥰🥰🥰🥰🥢🥢, he has man bug 😂😂 ooo ahhhh 🥴

[honeybug in reply to Blue-52]

just discovered network having issues now this is why things are playing up with crazy messages and missing emojis 🤪

???? Do you mean it’s imagined???

[Blue-52 in reply to honeybug]

No 😂, when he has a cold it’s man flu, now he has bug, and it’s a man bug 🤪

[honeybug in reply to Blue-52]

Ohhhhh…thanks for explaining. My late brother bless his soul had at least 1000 different names for the same thing so if I’m not sure about something now I ask about it.

Well wishes praying his man bug doesn’t become woman bug. 😷

Take care luv ya.

Gotta do nurse duty now love.

❤️ 🤗

[tamccart in reply to Blue-52]

Hi Blue-52Thank you so much for the advice, I will pass on to my daughter. Interesting about memory foam not helping the pressure points, will definitely make sure the mattress is comfy for her. Her collection of pillows and hot water bottles is also growing! She is arranging an appt soon with her doctor to discuss pain relief at night. She is finding physio causes her more discomfort and I agree you can only do so much. Many thanks for caring

Kind regards

Tamccart

[Blue-52 in reply to tamccart]

You are very welcome, the memory foam may be different for others, but I find and dips, doesn’t help me.

Glad to hear about all the hotties, they can help.

I hope she manages to get the right meds, take care.

[Winter_night]

Hi tamccart , I really feel for your daughter suffering so young. I too find Epsom salts great for long warm baths. I would say watch out for any dizziness or light headedness getting in/out of hot water though as those symptoms are common with hypermobility due to how our circulation plays up!! I recently picked up a heated fleece throw on Amazon for about £30, it’s remote controlled with a timer. The heat gives me so much relief. I also have regular gentle massages which are a luxury but a justifiable one!

I have tried all the different classes of meds and I find Gabapentin the best for nerve pain. I combine it with Duloxetine but that is to treat other issues. On the worst days I take cocodamol; not great to be relying on too much but very effective for joint pain if used sparingly over time. An osmotic laxative drink is a good idea if taking opiates and constipation becomes an issue (very common with hypermobility). All of the above should be available on prescription if they suit your daughter’s pain management needs. Don’t be fobbed off when it comes to pain management - it’s not always understood in primary care how severe hypermobility pain can be.

I have full blown hEDS but I know some people who only have the ‘hypermobile’ label that suffer just as much. I would also keep an eye on menstrual symptoms, iron levels and diet for maximum wellbeing. Lots of us hypermobile people find wheat aggravates our tummies even if we’re not coeliac. I have found it worthwhile taking notice of what suits me best food wise and watching out for triggers.

Best of luck to you and your daughter X

[tamccart in reply to Winter_night]

Hi Winter-Night thank you so much for your reply it is much appreciated. I will take a look at the heated fleece on Amazon.My daughter is waiting to see her GP to discuss pain management especially at night when the pressure on her joints gives her endless pain and discomfort. It's so lovely to be able to talk with other sufferers and get advice on how they cope with daily life.

Kind regards and thank you for caring

Tamccart

[honeybug in reply to Winter_night]

Great reply Winter_night.😊🌿🌸🦋

Please excuse my interruption…I was diagnosed back when little was known it was so new. You have taught me new things and I’m so grateful for it sweetie. Best wishes to be as pain free as possible.

Love and prayers.

Honeybug aka EJ 😊🤗♥️🥰🙏🕊🌿🌸🦋

[Winter_night in reply to honeybug]

ah bless you honeybug - best wishes to you ☀️

[honeybug in reply to Winter_night]

🤗♥️🥰🙏

[Emaych61]

I have Ehlers Danlos/Hypermobility Spectrum Disorder - I’m assuming your daughter has a similar diagnosis?

There is a forum on HealthUnlocked similar to this one for sufferers of EDS/HSD and you may be able get additional advice from people on there. I don’t get too many issues at night (well, at the moment I am but that’s because my back’s playing up) but there will be people there who do. There is also an Ehlers Danlos Society who might be able to offer advice.

[honeybug in reply to Emaych61]

Morning Emaych61 😊🌿🌸🦋

Oh I meant to say I have hEDS too but brain fogging due to stress of my hubby’s cancer surgery and 36+ hours w/o sleep.

Thank you for your details much appreciated.

Best wishes and take care.

Love and prayers.

EJ 😊🤗♥️🥰🙏🕊🌿🌸🦋

[Emaych61 in reply to honeybug]

“Like” as in “thank you for your reply” not for what you’re going through at the moment for which I can only extend heartfelt sympathies!!

All the very best!

[honeybug in reply to Emaych61]

Thanks so very much 🤗

[tamccart in reply to Emaych61]

Hi Emaych61Thank you for your reply. I will take a look at the EDS/HSD forum and ED Society

Kind regards

Tamccart

[Janecc12]

Hello, I was only told about my hypermobility when diagnosed with fibromyalgia and for years had been doing gymnastics without a care lol!! If only I'd know. Anyway; heat pads, tiger balm or any heat rub, neurofen and paracetamol ( 6 hours between doses for the neurofen and 4 hours between for paracetamol). See if any of this helps, if she is still have problems ask your GP for some pain relief and a referral to Rheumatology. I've also found elastic bandage from any chemist, has helped a lot and can be cut to size. It just helps support the joint a bit. Hope this helps - big hugs to you both ❤️

[tamccart in reply to Janecc12]

Hi Janecc12 thank you for your reply and advice, it is much appreciated.Take care

Tamccart

[healingspirit]

I went through about 4 different mattresses and ended up with a Emma firm mattress bought from furniture village with a emma pillow and now I sleep well without painful sleep disturbances and wake up fresh with no stiffness .

[tamccart in reply to healingspirit]

Hi healingspirit thank you for your reply. I will take a look at the Emma firm mattress and pillow. So glad you are now sleeping well.Kind regards

Tamccart

[healingspirit in reply to tamccart]

All the best

[Ellenindigo]

Hi there

I also have hypermobility and agree with the advice that you’ve got about not too firm mattresses and mattress toppers. I was wrenching my hip out of place turning over for some years.

The other tip is about tricking your mind to switch off from the pain. Hypermobility has , on some cases, links with very lively brain activity and anxiety.

I listen to audiobooks … on a timer, with sleep headphones. This distracts me enough to drift off. If I do have a bad night i just put the soothing book back on and I find myself floating back off to sleep.

Wishing your daughter well, my pain has been managed by 30mg of duloxetine a day but the medication journey is intensely personal as these posts tend to reflect…

[tamccart in reply to Ellenindigo]

Hi Ellen indigo thank you for all your advice. I think the audio books are a great distraction and help aid sleep. As a Fybromyalgia sufferer with lots of wake nights I am just turning to them. Kind regard

Tamccart

[Ellenindigo in reply to tamccart]

yes I have Fibromyalgia and HEDS - literally the worlds most annoying twin bedfellows 🙄

[fabpup01]

Hi tamccart, I am so sorry that your daughter has such a terrible issue but it is clear that you are a tremendous support to her. Have you considered trying a weighted blanket. They are really comforting and so help. Hugs and very best wishes to you both

[tamccart in reply to fabpup01]

Hi fabpup01 thank you for your reply. Have often wondered about weighted blankets, seen good reviews. Will definitely suggest this to my daughter.Many thanks

Tamccart

[Bolognese2022]

I am currently trying magnesium tablets and they seem to have improved my sleep. At least I am getting 3 hours before various pains wake me up.

[Nackapan]

My daughter hax Heds and pots .Stemming ftom s b12 deficiency.

Do get your levels checked along with folate levels

Vif D also check and ferritin levels.

Shd had z mis diagnosis of fibromyalgia.

Heated blanket. Fleeces

A good mattress essential.

A electric blanket useful.

Working out s diet you csn tolerate.

Almond milk advocated xnd salty chipsticks!

Shd now diary, gluten,red meat snd Fructose free .

Introducing mord foods back .

Swimming the best exercise and pirates.

A pain clinic was useful in the past.

Epsom salts good but warm water tricky fir pots

B1e injections help fatigue znd some aches

Totally dependent on environmental temperature.

Likes fresh air but wrapped up.

Amytripyline helped hef sleep.

Physio snd yoga csn help

[tamccart in reply to Nackapan]

Hi Nackapan thank you for your advice it has been so helpful and I will pass this on to my daughter.Kind regards

Tamccart