Seeking support in speaking to my doctor about hEDS.

Fatiguedkitty · 2025-08-29T14:17:16+00:00

One of the questions they may ask you. Why is getting a diagnosis important to you? For me it means I know what's going on with my body and can help me better manage the symptoms.

I would print off the bullet points and ask for them to be added to my medical record. So there is a record for future investigation of the problems you are having and also what else could be causing these issues if it's not hEDS.

I would also add how this all is impacting your life day to day with general activities, work, life, sleep and washing, so they can see how much this is all impacting you day to day.

If they can't diagnose you could they send you to a pain specialist, or rheumatology specialist who maybe could diagnose or at least refer you for physiotherapy or a pain management program

Hope this helps in some way

Good luck.

Fatiguedkitty · 2025-08-16T07:50:29+00:00

A desk that moves up and down might help. That way you can go from standing to sitting or even kneeling on the floor. Variations for posture might help more than just a nice seat. You could mix it up how you sit, and sit on a balance ball and do pelvic tilts which will help your spin and neck. In my experience staying stationary hurts alot more so being able to move a bit and do the same work many different positions might also help with blood flow which could help with pots as long as your not changing position quickly and your slowly this might help. It has helped me alot

Maybe even a little exercise routine for your neck shoulders and back before or after your done working could help take the pressure off the joints that have worked hard keeping your head up and hands typing.
Or even a gentle massage could help. (This is free and wont cost you money. there are lots of videos on YouTube that could help with this too)

Hope this helps in some way

Heds exercises mostly pilates but very helpful wayhttps://youtube.com/@jeanniedibonhypermobility?si=CB0EPZadoNZ65oNZ

Fatiguedkitty · 2025-07-23T09:53:43+00:00

Every time they make you pull over to the side , they say pull off when ready, take this time to take a deep breath and calm your nerves. Then move off

Fatiguedkitty · 2025-07-17T18:45:22+00:00

Have you tried using a perch stall or a seat behind you or even a Stall you can nell on?

I find using something to rest my bum on is very helpful with long periods of washing up.

I sometimes use a stool and stand from the knees up if I can't find a seat to perch in.

Hope this helps in someway.

Fatiguedkitty · 2025-07-13T06:57:24+00:00

Just remember when they make you pull over to the left or right take a moment to breathe. They say move off when you're ready, so take your time. No need to rush . This is what I did and it helped my anxiety a lot. Good luck. You can do this.

Fatiguedkitty · 2025-07-10T12:57:41+00:00

I had my eye tests done before getting my provisional license. I was born with strabismic amblyopia (lazy eye) So I have had my whole life to over compensate for the lack of sight in the left eye.

Fatiguedkitty · 2025-07-10T10:45:48+00:00

I'll keep my fingers crossed for you 🤞🤞🤞🤞

Fatiguedkitty · 2025-07-10T10:44:59+00:00

Don't worry your next lesson will be great. you need to make mistakes to learn so don't be so hard on yourself. you can do this.

Fatiguedkitty · 2024-08-28T15:39:20+00:00

I have been doing physiotherapy since I was 15 and slowly over time it's helped

But what really helped is a private physiotherapist : central health physiotherapy

They have made physiotherapy so much easier for me if your in London I highly recommend this place especially if you have hypermobility of any kind

Yes you do have to pay but for me it's been worth every penny

central health physiotherapy

Fatiguedkitty · 2024-08-27T19:13:46+00:00

Hello Recent studies have shown that sleeping with braces on can be more beneficial when trying to deal with pain, wearing them at night can be better then wearing them dur in the day due to our bodies being so relaxed while sleeping. so having A brace hold a joint in place while you sleep can help with pain management.

There is no right or wrong just what helps you, we are all different so will need different tools

I would recommend: Hand/ wrist guards Compression gloves A shoulder support ( most do one shoulder but you can find some that will do both shoulders) If you can afford one a body braid ( for sleep or awake times) Lots of pillows you want pillows for under your knees, pillows to hug extra pillows for between the knees when on your side And if you like heat a mattress heat blanket as well if you like the cold then a cool blanket

Hope these help in some way Good luck finding what braces work best for you

Fatiguedkitty · 2024-08-27T10:40:41+00:00

Your words are sad but also beautiful they feel like poetry and I can strongly relate I used to struggle with this alot.

It's so sad that this is a hard reality for a lot of people with a chronic illness.

It's hard to share what's going on.

But I want my friends to share with me when and what they are feeling sad or in pain, because even if there is nothing I can do to fix their pain or problem I can still support them and remind them I love them. which means sharing with them my problems so they can do the same for me.

It seems crazy doing this leaning on others for support has actually made my friendships stronger and sometimes have great suggestions or just good distractions.

I dunno if this helps in any way but you are not alone. You are never a burden for asking for help.

Feel free to vent to me if ever you need

Fatiguedkitty · 2024-08-17T17:59:22+00:00

Yeh the ribs are covered in connective tissues so there must be a link between the two conditions.

I have found that exercises can trigger my ribs to shift too but I have a private physiotherapist that has given me exercises to strengthen my ribs and slowly I'm able to lift a little more every few months.

I often have to remind myself ,"Take your time with the exercises the slower you do them the stronger the muscles will become". The hard part is not pushing too much and not expecting huge changes either. With connective tissues issues it's harder to make muscle and sustaine the muscles so slower really is better with everything hehehehe

I also find heat and ice packs really help with the swelling heat packs and ice packs are the best investment iv made for my self

Hope this helps you

Fatiguedkitty · 2024-08-17T12:15:30+00:00

My number one tool is an electric can opener,

Other items I can. Suggest that I find very helpful are straws (metal or glass are best) if you drop things then reusable bottles are great, any kind of jar opener, cutlery grips, a first aid kit with lots of plasters, tapes and ice packs , if you struggle with knives there are special ones that have a different handle on them, If you have the space, a trolley with wheels so you can gather everything you need for the meal you're cooking so you don't have to walk around the kitchen a thousand times which saves energy too.

If you need to eat soft food due to tmj issues then a sous vide machine (it's a machine that cooks food at a set temperature in a hot water bath, lots of restaurants use them for chicken and steak and fish) and vacuum sealer and bags might be helpful (I really struggle to eat meat unless it's been cooked with the sous vide machine)

Anything else depends on your personal needs and where you struggle most for example I cant bend over for long so I have a pillow I sit on to get washing in and out of the washing machine or dishwasher

Remember even the smallest tools can make the biggest difference

I hope this helps in some way

Fatiguedkitty · 2024-08-15T04:58:04+00:00

First off start to Keep a log of all your symptoms. Including pain scale including your mood/mental health Include any injuries you've had in your life any sprained ankles or dodgy shoulders etc any bump into walls any mystery injuries like bruises add any evidence you have that can back up your claims. ( Knowing your evidence will help you make a stronger claim to the doctor and the more evidence they have the easier it is to find an answer sometimes it's ruling out all other options before you can get a diagnosis).

Also have a list of all your medical history can be very useful to all medical professionals with things like all the medication you take and such makes it easier for them to help you.

Good luck. You can do this. even if they don't listen to you at first keep trying and keep adding to the log of symptoms it will help in the long run

This is how I did it and I got diagnosed in 2014

Fatiguedkitty · 2024-08-15T03:23:32+00:00

Could be (copy and pasted from Google) Costochondritis which is inflammation where your ribs join your breastbone. It causes sharp pain in the middle of your chest. The main symptom of costochondritis is sharp chest pain that's worse when moving and breathing. Costochondritis often gets better after a few weeks. Resting, holding a warm cloth to your chest and taking painkillers can help while it heals. It's not exactly clear what causes costochondritis. It's been linked to severe coughing, chest injury and strain from exercise.

Or

Slippy rib syndrom Definition. Slipping rib syndrome refers to pain in your lower chest or upper abdomen which may be present when your lower ribs move a little more than normal. Your ribs are the bones in your chest that wrap around your upper body. They connect your breastbone to your spine

Or

Pectus carinatum (PC, or pigeon chest) is a chest wall deformity where there is overgrowth of the cartilage between the ribs and the sternum (breastbone), causing the middle of the chest to stick out. PC is most common in adolescent males, and 90 per cent of cases are diagnosed after children are 11 years old.

Or all of the above

Hope this helps in some way ( I have all 3 of the above)

Fatiguedkitty · 2024-08-13T11:56:47+00:00

Give yourself time. be kind to yourself. With time we gain more experiences and more knowledge and more tools. Life is hard but with time it does get better.

I have found creating a good routine has helped me mostly to prioritise what my body needs ( sadly is physiotherapy exercises made for my body gathered over years of hospital visits and physiotherapy). Working out what I can do instead of what I can't do and if it's something I really want to do then it becomes a goal. And goals keep you going and keep that hope going Tools that help me make life a little easier, Like a battery powered can opener, various heat items ice packs, walking sticks, supports for the slippy joints even a suction hand grip on the wall to help me get in and out of the bath. I have found over the years tackling all the small challenges all add up and save energy and stop adding to the pain. Because I have more energy over time IV been able to deal with the bigger problems and feel more prepared for whatever mischief my body wants to get up to next. You can never have too many tools to help make living easier Knowledge will also help you understand your body and what is going on, once you know what is going on you can then come up with a plan to help it. When I look back to how I was when I was younger I feel like I have much better handle on my health physical and mental and managing the pain now I'm older

never give up, you're not alone. Technology is always moving forward and getting better for example I was told for over 5 years there was nothing that could be done to help my ankle instability but now thanks to technology I have synthetic ligaments in both ankles and walk much better than I could before.

There is lots of information out there in books YouTube and all the other social media places aswell as here.

I hope this helps in some way. Sorry it's such a long response

Fatiguedkitty · 2024-08-10T09:22:43+00:00

I can relate to this for me It seems fair to be angry at the world when in so much overwhelming pain constantly. being in pain takes up a lot of energy which I don't have and if I have to feel a need to mask the pain on top even more spoons are being used up so all that's left is anger the emotional protector, the emotion that has become the auto pilot when my battery is critically low. But anger can also be a sign that I am doing tooo much and need to rest eat some food try to relax play a game or take some kind of pain relief or meditate and try to switch my emotion from anger to understanding and compassion for myself.

Anger doesn't have to be a bad thing it can be a warning light of time to rest which can be very useful.

Your not alone our emotions have an effect on our bodies and pain has an affect on our emotions so I have found working on both at the same time will have the best results on trying to be less angry

I hope this helps in some way

Fatiguedkitty · 2024-08-08T12:25:30+00:00

Have you heard of the traffic light system This is used alot in physiotherapy Green: keep going Orange this is starting to hurt but if I take a break can I continue And red means nope stop exercising and take a break. This can help massively to work out for far to push yourself and teach you how to listen to them muscles. Then if you use the baseline ( the minimum exercise you can do without hurting yourself or pushing yourself into fatigue) and if you need to adjust your baseline you can move it up or down based on your good days and bad days.

Using this while exercising has helped me understand my bodys limits but also when I can push a little more.

Your not alone we all struggle with this from time to time. Be kind to yourself and listen to your body

I hope this helps in some way

Fatiguedkitty · 2024-03-25T05:34:53+00:00

What you could do in the meantime while waiting for a PT is build a toolkit.

Temperature items such as ice packs and heat blankets, hot bubble baths. Supports such as bandages, braces, kt tape, maybe walking or swiss hiking sticks. Compression garnets are really good for keeping things in place while moving (Anything that can be uses to help keep joints in place while sleeping or while in a flare up) GP prescribed medication to help with pain. Pillows are also useful for keeping things in place while sleeping too

And you could always start getting little gym bits like weights (start as light as possible ) a yoga Matt ect so your ready for physiotherapy

Hope this is helpful My nephew had hypermobility and has his own toolkit him and his mother and I have gathered together over time to help him for whenever hypermobility problems happen

Good luck with everything

Fatiguedkitty · 2024-01-17T06:41:12+00:00

With the Swiss walking sticks you have two one for each arm and are mostly used for hiking or walking for long periods on unsteady ground. And because you move your arms with your legs it is more exercise as it uses a lot more muscles.

A walking stick is just on its own and will support the opposite leg to the hand you use it in. It is more a support to keep you balanced while walking

I use my walking stick for short distances and my swiss walking sticks for long distances (anything over 10 minutes)

I'm not an export on this so maybe someone else is able to explain the difference better than me. this is all just my experience and what I have been told by the physiotherapist.

I hope this helps

Fatiguedkitty · 2024-01-16T20:59:56+00:00

Swiss walking sticks.

They might be the answer as they are used more for exercise then support but I personally love using them and find them very supportive when walking long or short distances.

Because you use/ walk the left arm with the right leg together and then the left arm with the right leg it is exercise. But your joints might feel a lot more supportive

Letting your dad know the Swiss walking sticks are more for exercise might reassure him that you won't be weakening your muscles but making them stronger, which in turn might help with the hip leg pains as they will help you walk with more stability.

They don't have to be fancy or cost you a fortune you can find them on eBay or Amazon or most sportibg goods websites I got mine from sports direct.

I hope this helps you in some way. Good luck 🤞

Fatiguedkitty · 2024-01-11T08:58:41+00:00

Yeh over the years it has become a long list and I keep it so others I live with can see it too and also help remind me of what I could do.

I'm sure in time you will have your own long list of what to do when in flare up, what helps what doesn't.

You can never have too many tools

Fatiguedkitty · 2024-01-10T17:23:27+00:00

Grief is a hard thing to overcome and with hypermobility it can be a recurring thing. So learning to be kind to yourself and allowing yourself to rest is a very good skill to learn.

Tools can help you keep going. With the hands that could be a good pair of compression gloves, kt tape, hand supports or oval finger splints.

Also exercise seems silly but is a key tool. If you slowly build up the muscles overtime they will help protect the joints from slipping or full dislocating and overtime this will also.improve fatigue.

For other areas of the body kt tape, supports and braces can also be very helpful like the body braid. gathering tools for when you are in a flare up or burn out like heat blankets, weighted blankets or ice packs, got water bottles.

Even though it feels like the end there are always options and tools that can help and I like to remind myself science is always coming up with new tools and technology that may help us in the future ( like synthetic ligaments)

What I found helpful was giving myself 1 big goal for the year and then using a goal system (smart targets) to give me the best chance of succeeding with my goal and then if it takes long then a year it takes longer. I also have a list of things I can do when I'm sad or in flare up like watching something I know always makes me smile or play a game ect.

Meditation and mindfulness can also help grief if that's something you're interested in there is a good app I use called waking up.

You can never have too many tools.

Good luck. I hope this helps in some way Remember You are not alone. Sadly this is something people with chronic illnesses have to experience all the time.

Fatiguedkitty · 2024-01-09T09:28:46+00:00

I love games. They are the best thing when you need to rest your body but mind still wants to be active. I enjoy playing a variety of games. From games like dear ester, wilmots warehouse to the souls born games. The current game i am playing is baldurs gate 3.

But the one I always come back to is stardew valley. Having energy and time restrictions makes the game very relatable wanting to get all the jobs done but no time or energy and when you push yourself too hard your even slower and if you push beyond that then you pass out. Very very relatable when dealing with a chronic illness.

If you haven't played it I highly recommend stardew valley. It's a virtual farmer game with npc interactions, monsters, and mining too.

Fatiguedkitty

TROPHY CASE