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Ehlers-Danlos Support UK
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Having a bad time with pain

I’m in so much pain! My ribcage is hurting so bad. Plus My shoulders, hips, wrists, neck, neck, jaw. The pregabline and morphine are not taking the pain away! Arrrrh! It’s awful. Especially when one is alone. Oh why does this dominate my life! I hate it! 😢

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My sympathies. Does it come in cycles? Did you do something yesterday which set it off?

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Hi there I’m usually in pain all the time. But if I don’t get enough sleep it’s worse, but yeah it is often worse if I do too much, which is usually not much! Sometimes it can last 9 days or less. It’s causing depression too! Smh then there’s the tinnitus. Oh my 😔

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Gentle hugs Manolita🤗

You have described the same pain that I have too. I cannot take pain meds other than ibuprofen due to GI compilations. So I have to endure it. You are not alone. I hate being this way too. I am sick and tired of being sick and tired!!!’😩😡

I don’t sleep much do you? 💤

Sending you hugs 🤗and love 💕

😊🌸

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Hi there honeybug gentle hugs 🤗 back thanks that’s just what I needed. I don’t get much sleep either. But the psychiatrist gave me zopiclone, but I don’t take them very often as one becomes tolerant, and I’m on enough medication as it is. I am feeling low! 😔 it’s hurting me to breathe I am sending you some love 💕 💖 🤗 hugs 💕💕💕

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Awe you’re so sweet. Thank you for the love. I needed that too. I’m sorry you’re hurting so much. Since I do constantly , I can’t offer help for relief just BIG empathy. 💋 kiss the boo boos but would be covered in a spit bath due to all the spots needing a healing 💋. 😃 I’m sorry you hurt 😔 to breathe. Do you have pleurisy too? I do and I feel for you if this is your fate too. Gentle 🤗 and Xxxxs

😊🌸. EvaJo

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Hi there 🤗 empathy is invaluable, thank you, exactly what I need 🦋🌸🌸 im having spasms in my jaw (TMJ) I’m here lying in bed with my electric blanket; the heat helps so much, & this British climate really doesn’t help. I don’t have plueresy as far as I know! But its in the front and back of ribcage (the entire ribcage) I cannot wait until it eases. If you don’t mind me asking what condition do you have 🌸🌼🌸🌼 xxx 🌼🌼🌼🌸🌸🌸

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IEM FM MVP EDS SS Hypothyroidism hypoglycemia. Erythema Nodosum. Raynauds Phenom trigeminal pheripheal and idiopathic neuropathies CHI with suspected CTE. night blindness no depth perception Bilateral Meneires asthma carpal tunnel bilateral scoliosis c/t spine. Sciatica environmental food and meds allergies hearing loss occular and vertebrobasilar migraines high blood pressure. High cholesterol overweight... there’s more but I’d have to get my list and it’s boring... blah blah blah blah I believe many would say.

What all do you have?

🤗🌸😊

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Hi there oh my dear sorry to hear that you have so many health problems I don’t even know what most of them are the night blindness must be scary! How do you manage? I’m sending you some gentle hugs 🤗 and some love 💕 I hope you’re doing ok today xx 🌸🌸🌸

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How sweet of you Manolita

Sorry about using the initials there are so many of them that it would take forever to spell them all in such a quick post.

The night blindness has been active for 40 years so I just make sure I don’t move around without lights. I can’t drive at night but I don’t miss that at all never liked to drive anyway too many crazies on the road now

Thank you for your empathy. I have had most of them since my youth and they kept on growing

I’m doing as well as I can I try not to dwell on it or it would defeat me. I concentrate on helping others as much as I can via support (no physical abilities now).

How about you hun? You okay?

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Hi I’m not as bad as yesterday but I’ve had lots of sleep thank God! Which helps tremendously!!! Going to sleep again (hopefully) in a bit. Its good to help others so many ppl don’t care. But thise who do make up for it, my brain feels so tired think pain is exhausting! I know what you mean about the crazy ppl on the roads! I too don’t really like driving anymore 🌸🌸🌸

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I have tinnitus too...if I didn’t know better I think 🤔 you’re my twin. 😊😊

😊🌸

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Wow! How about that. I think I’ve got Elhers Danlos Syndrome as i have Joint hypermobility, fibromyalgia, arthritis, supra ventricular tachycardia, can’t remember the rest I’m so tired 💤 😴

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So do I!!!! Except I have sinus tachycardia. At last count I had 60 diagnoses. I have to get my list to remember them all.

Wow... I am so surprised to find someone else like me.

😊🌸

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I’ve got a friend with the same name as me who has eds but she doesn’t seem to understand for some reason. She has a partner and a 17 yr old child, whereas I’m living on my own. So on days like this when I am hungry (which I am starving now) or want a cuppa tea but the pain is horrendous so I really don’t want to go downstairs and move around! 😔 i need to stop feeling sorry for myself🌈🌸🌸🌸🌸xxx

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So sorry hun. Things seem so much more intense when we’re alone. Ugh...stairs!!! Aren’t they the worst when we hurt so bad? I don’t think you are feeling sorry for yourself. It’s your reality.

When you finally get to the kitchen to make your tea ☕️ try to make extra put it in a carafe if you have one. Make your meal and extra put it in a portable cooler with an ice pack. Or make a non perishable meal and place it beside you for later.

This would help you some if you can do it. Xxxx

😊🌸

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It means so much to find someone who actually knows exactly what it’s like to live with chronic pain etc because we have the same problem 🦋 even my thumbs hurt! I am drinking water I really cannot manage the stairs (need to move to a one level properly) nor thr kitchen. How long have you had this condition 🤗💕🌸

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I was born with it. I have countless injuries throughout my lifetime. I have learned to live with it up until I collapsed on the sidewalk and damaged my whole body when I landed. It damaged my pelvis and hip and left me with my right leg being short what a nightmare this has been for me. 😩.

I have splints with thumb supports that I wear to help function. I have to do everything with my left hand now because of carpal tunnel.., need surgery putting it off as long as I can but the pain is getting more than I can bare lately. Just talking to is helping me feel better 😊💕🤗Xxxx

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So sorry I fell asleep yesterday and woke up and my lovely dad called in for a few hours.

I can understand why you have been putting off having the surgery, i had a break in my left wrist (radial bone) so had surgery and a mental plate inserted, it’s unpleasant to say in the lead! Sorry to hear about you having a fall! It sounds absolutely awful! 🤗 love coming your way 💕

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I will answer this later dear

🤗😊🌸

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Hi again

I took a little nap 😴 then made lunch talked to my brother.

I’m glad your dad visited.

Always great to spend time with parents when you can.

Oh I’m so sorry about your broken wrist and surgery. Was it a compound break that lead to the metal plate mend?

You poor thing. Here are some post boo boo 💋💋💋💋🤗🤗🤗🤗🤗💕💕💕💕💕

Are you fully recovered now?

Thanks for the love much appreciated. The fall as been one of the biggest challenges l have had next to my near fatal closed head injury at age 7.

It was Winter and I was ice skating in my neighbors yard.

I fell down and upon opening my eyes in 5 seconds l saw a sled 🛷 hit my head. Someone got my dad and he rushed me to the hospital. I don’t remember anything until dad laid me down on the floor in our living room after my discharge from the hospital.

The damage after the hit: partial vision loss in the right eye. Light sensitivity a bruised brain short term memory loss and now suspected CTE the injuries that the athletes get from concussions.

I’ve learned to live with it and the other effects.

But the short leg has been a challenge every day due to my EDS.

How’s it going with you?🌺🌺

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Hi there’s I’m falling 💤 is sleep i will respect properly when I awake 🤗🌸🌸🌸

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If you haven't had Carpal Tunnel treatment, I would highly recommend it! Helped immensely. I had both hands done.

🌻🌻🌻

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Hi Lady...

No I’ve had continuous flares for the last 3 months and waiting for my husband to recover from his hand surgery. Will make the appt soon to see his surgeon.

Thank you for sharing your experience it is so encouraging.

Have a great day.

Gentle 🤗💕Xxxx

😊🌸

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Understand completely. Also remember that your hand will take recovery too. I worked with mine, but it was my own business so didn't have the luxury of sick days. So if you can rest it your recovery time should be shorter.

Best of luck!

🌻☉😎

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Thank you Ladyutl for that helpful information. I will do that. It feels good to know that you care.

God bless you and take care

😊🌸 🤗💕xxx

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Feel free if you want to pick my brain. I actually watched the surgery. It was easier for me to know what was going on rather than panic and pull my arm away. Yes WEIRDO!

xx

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I’d appreciate your help whatever you’re up to ... but only if you’re able to. Thank you so much for caring. 🌹🤗💕xxx

😊🌸

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Yes more than happy to! PM me anytime. Helping keeps me alive and feel like I still have a purpose.

🌻🌻🌻

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Please forgive my ignorance but what is PM and how to do it?

😊🌸

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Private Message 😉

🌻🐞☉

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Oh. How do I do that?

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It's the two speech bubbles to the left of the bell at the top of the page. Well that's where it is on my on my mobile anyways 😉

🌻🌻🌻

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Thank you for helping me. I’m still learning about this technology only been using this smartphone for a little over a year.

I will need to take a catnap before I PM you okay?

😊🌸

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Hi 👋 Ladyutl 🦋🌸🌺💕🌹

I must be dumb as rocks as I’ve tried all day to send you a PM. 🤪🤯😭

Oh well... 😊🌸

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No your rocks are smart! I got the message I've just been off line. 😎🌻☉

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I can really emphasise with you and it sounds like you're having a really bad time of it recently. I'm so sorry to hear. Like most of us there will be better times and all you can do is focus in on those, avoid quiet times on your own as much as possible and try to be positive and never give up the fight! ☺

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Thanks James I’m getting more depressed as I’m dominated by this alien type thing it affects every aspect of my body, life & mental health! I envisage a lifetime of this...it really is making me very unhappy 😔

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Thank you for that much needed encouragement. Can’t avoid alone time. Most of my family is unavailable or passed on. I have lived and survived my solitude for most of my life because of my steadfast faith in the LordGod without him I never would have survived a lifetime of trauma and tragedy.

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James sorry had blurry eye just as I was almost done I hit send by accident.

Yes... I agree with you that we should never give up and stay positive.

God bless you for your kindness.

😊🌸

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Try not to get too depressed as this just makes the pain feel worse. Having had this for over 20 years I can say that when new pains develop they are worse than the existing but in time and a positive attitude they do and can decrease at times (We all have bad times unfortunately) elbows are fairly new for me and most of my attention seems to be on them and this new pain. All the rest are still there mind you but perhaps it's habit but I just seem to be resigned to this as being the norm 😔

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Hi there I have had pain in my neck, jaw, shoulders and face which started about 20 years ago caused through bruxism which resulted in myofacial pain dysfunction syndrome. However the pain is almost everywhere now. But I know what you mean about new pain, i thknk my brain is so shocked by it that it’s seems worse than the usual pain. But yeah depression makes pain worse and chronic health is the norm for folk like us 🌸

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Totally agree new pains are the worst! When I get a new pain I try and concentrate on a pain I know to fool my brain into thinking it's a familiar pain. If that makes any sense.

🌻🌻🌻

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Great idea👍🏻👍🏻👍🏻👏👏👏

😊🌸

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It does make sense yes. Distraction technique is good for me. Doing something or particularly watching a box set that I can really done out to 😃

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When I'm really really I'll from IBS episode, I must watch something anything on Telly to pass the time. Cuz that's all you can do! I used to hate the telly but have managed to make friends with it. 😉

🌻😎☉

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I am going to have a catnap soon myself. I’ve been up 48 hours and I am beyond exhausted. My eyes are blurry now

I sleep in my office chair because I’m flaring (slept in the bed 4times in 3 months now).

I been having bad edema A new problem with my bad flares.

I hope you never have to go through this too ...it’s bad.

I am coping better since I joined this forum 3 weeks ago.

So many lovely people here. It really feeds the needs where loss of family former friends and acquaintances have taken place.

Because we all know that healthy people don’t want to be around the sickly ( there may be some exceptions I’m sure)

That is okay 👌. I think we are some of the most compassionate people on the planet 🌎. 💖

I have known some girls that fall apart over bad hair days or broken nails or no cell reception.

I applaud all of our brave inflicted warriors 👏👏👏👏👍🏻🎉🏆🥇🥇🥇👑🙋‍♀️

And with this I bid all a good night or catnap dear friends 😊🌸. 🤗💕Xxx. 💤

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Manolita, I completely and utterly understand. This has been a terrible time for me too. I'm off to a new Rheumatologist so we'll see what he says.

Please feel free to PM and have a good ole moan. Sometimes it's good to get things off your chest and hear someone else's woes. It enables you to move on because your not alone or get ideas of how to pass the time so the painful days go by quickly.

I wish you the best!

Big gentle hug xx

🌻🌻🌻

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Hi there ladyupinthelake yes yourd right it’s good to talk / have s mozn, to others n get things off ta chest and to listen to ithers, it helps distract one from oneself. It’s lovely to hear from you. Ive ben napping on the sofa 🛋 all night just come to 🛏 tinnitus is loud, got some music 🎵 playing to try and distract me.

Gentle hugs 🤗🌸🌸🌸

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I've had tinnitus for years now. I've never knew so many people had it. I've never told the GP because I don't think there's anything you can do about it, so why add to the list. But it does drive you bonkers some times eh? Is it worse when you flare? Mine is.

🌻☉😎

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One thing that always helps is a warm bath and all the pampering candles etc that go with it. Being able to float seems to ease the pain. Maybe even try some Epsom salts? Lavender Essential oil to calm and it's a pain killer, mild but it's the whole relaxation method that helps. I hate the bathroom I'm in just now and find it hard to make the mood, hope you can!

🌻🌻🌻

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'Ladyuponthelake' couldn't help but find sick humor in your " get things off your chest" ALL of us with rib pain would love to be able to get things off our chest!!!! 'Manolita7Z7' you may want to try DRY NEEDLING. I did this couple years ago & it really helped my horrendous rib pain levels diminish to tolerance. Currently under dry needling treatment for my neck & back from recent car accident causing whiplash. It's a very painful treatment that does work & once it has shut down a nerve & muscle area it is done forever!! The way I look at it...already in excruciating pain so why not self inflict it to rid self of it!!? You are only one who can help yourself & find your path of some relief. Be your own best advocate! Take care : )

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BeezyB

I’m across the pond in the USA.

Forgive my ignorance but is there such a thing as dry needling and if so can you explain how it is done?

Thank you

😊🌸

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'honeybug' I too am in USA and dry needling is western form of acupuncture. However I've done both & nothing similar in my view except that they both use needles. They find the trigger point in your muscle and insert needle into it. Then they work needle in and around & up and down to make the muscle twitch. Once it is done twitching then the trigger point is gone. It is very painful but then again the suffering is as well. No pain No gain!!!

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Hi BreezyB

I’m Michigan where are you?

I only know of one place around here and getting in is almost impossible

Thanks for sharing the info. Much appreciated.

How are you doing atm?

😊🌸

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I'm out west in very remote area but have found a physical therapist who does this well. I'm pushing myself thru my work day....waiting for 5 o'clock so I can go lie down! Missed my dry needle apptmt today cuz muscles so tense I knew it would hurt way too bad....Try again later on this week.

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Sorry Breezy

Try to take it easy if you can

😊🌸🤗💕xxx

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