I have EDS type 3 and over a year ago I was diagnosed with fibromyalgia. I developed fibromyalgia after the birth of my third son 2.5 years ago. Since then I have been declining quite rapidily and it is greatly affecting my day to day life. My rheumatologist has told me my symptoms are progressive EDS and FM.
Since the birth of third son my hips have been very weak and often feel like they have come out of place. I regularly go to a mc Timothy chiropractor. I have been able to build up strength since my last son as I have been continually suffering debilitating fatigue and pain.
In the last few weeks I am really struggling to walk and it feels like I have no stability in my hips. I have to wear a lower back/ maternity belt to feel supported. Even then I am struggling. I am okay for maybe an hour in the morning but after that I need to rest and then I might build up some more energy to move again.
I was just wondering has anyone else experienced this? Can you recommend any treatment?
Your reply is appreciated
Xx
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Strongshell3
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Are you doing any (gentle at first) hip strengthening exercises? My hips are now weak and loose so these exercises and pacing/breaking down activities BEFORE effects my walking are helping.
I must be very very hard. I really hope pysio and pacing helps for you. Even a bit. It's the only way I'm still walking but if I don't split and put in rest stops I'm done in with pain. It sounds impossible but even if you have to leave earlier or set an alarm to sit down every 15 minutes or what you're own baseline should be (I use stand up app) it can be sooo worth it. Excercise was very difficult at first as core/hip muscles so deconditioned but worth it for me. Delegation and asking for help is part if it to. Others I've met use taping or a stick from time to time. Crossing my fingers for you and gentle hugs!
My only recommendation is a good physio - try to get one who has some experience of hypermobility problems.
To help the hips stay in place there are a number of belts available and I wouldn't even get up without one.
Like Debra0001 says, ask for help from friends and family. Now is the time for all those favours and offers of help to be called in. If you have a spare bed, call in a mother/in-law to come and do everything for you for a few days while you rest up and practise some hip strengthening exercises - there are lots online for you to start doing while you wait for your physio referral.
My hips feel looser all the time, so let us know how the physio stuff works out!
Or look for hip braces in google and see what comes up. Just remember that long term splinting can cause muscle weakness. Check with your physio to see if this is suitable for you. Hope you find a solution soon.
Hi! I also have EDS type 3 and fibromyalgia. I have the exact same thing with my hips where they constantly pop out of place when I move in certain ways or walk for a certain amount of time. I’m only 22, I don’t have any kids and the only thing I do really is make sure I have lots of breaks in between walking and walk at a pace that is suitable to me and I also use a walking stick. I’m sorry I don’t have more advice to help you. Have you tried joint physio? Sending my love and support x
Gosh thank you for all the helpful replies. I really appreciate it.
The rest app sounds great. I will definitely look into that.
Also investing in a good hip brace. The maternity belt helps immediately as does the kinesiology tape. I find it difficult taping myself up in the morning while trying to get the boys ready for school. So I think the brace will work better for me.
My local physiotherapist is not that great. However it’s been a while since I was last there so I’m hopeful that things might have changed!
After reading the earlier message regarding exercises I decided to google videos showing hip exercises and started to do some while my little one was sleeping. I quickly realised it is my right hip and it became really painful! so I gave up quite quickly! I now have referred pain all up my right side 🙁
Typical me no patience or pacing !!
I think I’m going to wait until I see the physio before trying again but I’m glad I did because I am really sure it is just my right hip.
Thank you again for all your replies. While I’m not happy that we are all suffering I find comfort in knowing I’m not alone
Hi sorry that exercise hasn't helped this time. I'm wondering maybe if you did too much too soon? I can only suggest what I was advised for same thing - that I started REALLY REALLY REALLY low level for tiny amount of time.
I can't advise you medically but can tell you what they said was good for me. E.g. Just lie on back curve pelvis up slightly three times. Squeezing. Daily. Once can do this ok. Then more.
Then to crab (I hold my hip to stop moving for this one. Very very small slow and only three. Etc etc.
The other big thing for me is sitting up correctly so using core. 2 mins upright 5 minutes slump.
Gentle stretches in chair every morning.
Please try not to stop moving as muscles will waste.
The pacing is the biggest thing! To stop further injuries from unstable joint.
I watched For the love of dogs last night and a dog had similar problem and pysio starting really gently for not much time helped him reposition his hip with the stronger tissues!!! Funny but nice to see it really works!
Hope you get your pysio apt soon (And they assess hip strength) and give you the correct baseline for you.
How are things today? Just remembered a blue badge helps me to plus making sure I've got everything downstairs so I don't have to go up and down. Velcro shoes so kids put on themselves. Everything at waist height. NO ironing, NO shopping (use gousto). Oh and sofa/chair/car foam cushion so hips always higher than knees or strains hips. Oh and I do IT band stretch for hip pain every morning before move (as well as general very gentle stretches). Hope helps and pacing going ok.
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