Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness


Jan 26, 2019 11:17 PM

Hey guys, I’m new on this site, so nice to meet everyone who might comment on this post. From what I’ve read so far, it seems like a nice community.

I have just been to rheumatology for the first time and they suggest that I have hypermobility and they’re open to the thought of me having fibromyalgia but they don’t want to diagnose that too early. I am being sent to physio therapy and whatever the foot doctors are called since I have flat feet.

All I’ve heard from hypermobility is that it is genetic however no one in my family is hypermobile or even flexible in any shape or form. So not sure if it’s always genetic?

I also wondered what tips you might have to reduce the pains in.. well literally every single joint and muscle, since everything hurts.

I’m only 20 years old however I’ve had this pain since I was around 12? Or at least that’s when I noticed it, I’ve been flexible all my life. However, now I’m finding it difficult to go to university and I already have anxiety so I feel awkward going to university anyway and the pain I feel makes me not want to go in more!

Oh, I’m from the UK btw.

Jan 27, 2019 8:47 AM

Welcome to the community Risha! I don't have hypermobility, but from what I've read it seems to cause great discomfort & pain to many. But I do have fibromyalgia that causes my muscle pain. And I have Sjogrens, OA and DDD that causes my painful joints. I've found that being too immobile, sitting too long or even sleeping in bed, causes my muscle and joint pain to increase. So I try to move at least every 30-45 minutes while I'm awake. And at night I automatically wake and change positions due to the pain multiple times. I can't get in & out of a ton so I rely on warm showers, warm clothing and blankets. If I get cold I hurt worse everywhere. I also have mobility issues that prevent me from being on my feet too long (POTS, vertigo, I'm balance, etc), so in the past 9 years I've learned to create balance in my account. Be patient with the fibro diagnosis, most of us it took a couple years for the docs to say for certain. I take a low dose of both gabapentin and pain meds; due to my hypersensitivity to meds I'm limited. But I've learned from others here to be open to various methods and I take supplements as well as having decreased my sugar intake. My hubby was diagnosed diabetes at Christmas so now it's almost total cut off sugar except what's natural in fruit. Many here have suggestions, and many who are no longer on here too. So read old posts that are about fibro & hypermobility. Hugs love & prayers you can find ways to help you cope with your new diagnoses & still enjoy life as much as possible! 🙂❤🙏🌼

Jan 27, 2019 4:02 PM

I am sort of the same with the pain, however my hands hurt if they get too cold or too warm, which is odd. But my body is naturally cold anyway, I think I have bad circulation in my hands and feet. However, I prefer being cold than warm, as being warm tends to give me a migraine. I’m a bit of a bedroom dweller as my mum says, so I don’t really get out and that is perhaps why my body aches more than it should. I’m very inactive and probably haven’t done proper exercise for years. So I have things I do need to do, i.e physio exercises that I know about and perhaps to walk a bit more, but didn’t know if there were any medications (other than Naproxen or Codeine) that people with hypermobility or fibro take, as it hardly touches the pain, and I’m not even meant to take codeine haha!
Thank you for your advice though and thank you for welcoming me. I’ll keep updating this post as I find out more information about my joints!

Jan 28, 2019 8:16 AM

I have so much to share. There are Facebook groups to join. My so and my brother have hypermobility. It’s a form of Ehlers Danilo’s Syndrome. Because it’s on a scale of mild to really bad they have different names. hEDS or EDS3 is how many refer to it. It can appear suddenly without it coming from a family member. It’s called a spontaneous mutation in your genetics. Many times they like to say it’s fibromyalgia but it’s really EDS. There is so much crossover it’s hard to tell. I know previous comments mentioned gabapentin but if you can stay away from that med please do. It’s difficult on the brain. I have so many things to share and it’s so hard to type. I’m happy to share my email with you so I can send you links to articles and pages and people! There’s certain meds to avoid like the stuff they prescribe for crohn’s. I think it’s call fluricortisoid. Or something like that it’s really bad for EDSers. The other REALLY important thing is get inserts immediately. The flat feet are bad and can cause so many more issues. In the US we order chipmunks from Cascade DAFO. They are insoles that have a high arch shifting your entire foot into the correct position. Don’t go get a cheap in the store. This is very important. Another thing is your energy. You might not have the same as other people. And if you use it up one day it might take you longer to recover than most. Does this happen to you? Do you use Facebook? Also I’ll post a link to some documents you should read. Ask me anything! Also look up the cusack protocol. Taking those supplements might help you feel better daily.

Jan 28, 2019 8:23 AM

Your hand circulation thing maybe Raynauds which is a common comorbitity (sickness’ that go hand in hand). Do they go red and purple colors? Splotchy?

Jan 28, 2019 8:28 AM

Most meds don’t help EDSers. UK is easier to get relief though. Some say small walks in the morning help them for the day. Others save their energy for the real moments they need it. Look up the spoon theory. If you have trouble with feet first you have to go to the foot doctor to get insoles and do PT. They will slowly work you up to exercising more. You might have low muscle tone in your legs from not using or using incorrectly. Very important to see a PT. If your mom wants to chat with me I’m happy to do that too.

Jan 28, 2019 8:57 AM

I was also going to suggest Raynaud's in your hands & feet. My hands and toes turn purple & I can't tolerate real hot or real cold on them. As for the gabapentin side effects, yes it messes with my memory, so be aware of any meds side effects they may put you on.

Feb 04, 2019 2:44 PM

Hi Risha. First of all, I will wish you courage for accepting the disease. I know it could be difficult. I'm 16. I lived with the pain since last year. Nobody, no doctors knew what I had. It's lately, that they have discover that I have fibromyalgia. My parents didn't support me and I was alone. People in my school think that I lie about my pain. So if you need someone I'm here.

To reduce the pain, every day, at morning, I do exercises to unlock articulations and muscles, I don't know how to explain that in fact. But I think you can find some things in internet.

Also, you should not stop sport. It would help you

Sorry for my bad English... I'm francophone...

Don't forget to text if you need.

Feb 04, 2019 2:51 PM

If you want to add my Facebook to message me easier, it’s Samantha Louise. I have ginger-ish hair and my cover is me and my best friend who has blue hair.

Thank you all for your advice and sorry I haven’t replied! I kept forgetting to check this app. I just got my physio therapy letter through and I am going to a foot doctor to get insoles for my feet. I also do believe I have Reynauds, however my mum doesn’t seem to think so and she’s a nurse. However, she didn’t think I had pain either so I’m in the same boat as you (ZessLaure). However, I’m just waiting for letters through at the moment so I can ring and make appointments! Also my legs have been killing me after I went on a night out on Friday, I literally couldn’t walk day after. My body just feels like it’s failing on me and I’m only 20. It’s such a weird feeling! Hope all you guys are good though!!

Feb 06, 2019 3:36 PM

I'm sorry you are in pain, also. Good energy to you!

Feb 11, 2019 5:34 AM

Hey! I feel like I just read my own story.. I have hyper mobility syndrome and fibromyalgia and I’m 20 also.. and struggling to feel my age :( and I have super bad anxiety as well..
I am still trying to wrap my head around it myself so I don’t have any advice I’m sorry but I am wishing you the best of luck in trying to find some relief I hope you are okay ❤️

Ready to start relieving your pain?

Join Community