My body hurts and I don't know what to do

My daughter has hypermobility and inflammation as a result. What meds have you tried? Have you done PT? If you have PT and imaging shows no bone involvement, you are eligible for platelet rich plasma, a procedure my daughter had, that effectively tightens the loosened joints (which start out hypermobile and loose but can get even looser, creating problems). Unfortunately PRP is still out of pocket, around $1k, but it is offered within mainstream top notch orthopedic centers.

Hi, so sorry you are suffering pain in your joints. Overly flexible joints like ours can result in joint dislocations and early-onset arthritis, which may explain your pain. Do warm showers help? Have you tried over-the-counter pain relievers — such as acetaminophen (Tylenol, others) ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve)? (Be careful with dosage and duration — these pain relievers are for temporary relief and not long-term use.) Eating a good diet with lots of water, some protein, vegetables, fruits, whole grains, whole foods and minimal to no processed food will also help nourish your connective tissue.

Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body. Joints with weak connective tissue are more likely to dislocate. I know because I am also double-jointed and had a lot of joint issues in my late teenage years. My knees would give out and I would fall to the floor! A doctor said my knees were like those of a football player and likely I would need surgery.

Instead I learned to exercise every day with non-weight bearing exercises that are gentle on my joints like walking, bike ridding, elliptical machines and swimming. No more jogging or running. My knees, elbows and other joints still crack sometimes, but I so far decades later I haven’t needed surgery on them. If I don’t exercise for a few days though, my knees let me know. Consider also avoiding contact sports, extreme weightlifting and other activities that could increase your risk of injury, and minimize stress on your hips, knees and ankles.

I wish I had done more to protect my jaw joints, like avoiding chewing gum. I also take breaks during dental work to close my mouth. Other things I’ve learned: Don't sit for long on hard chairs. Don't sleep on firm mattresses. Sleep on my side. Use body pillows and super-dense foam mattresses to support and cushion my joints. Wear supportive shoes with good arch support and laced boots to help prevent ankle sprains.

This article, “Strengthen connective tissue: what helps?” at https://www.css.ch/en/private-customers/my-health/physical-health/bones-muscles/strengthen-connective-tissue.html , appears to be from an insurance company but does a good job of summarizing some of what I’ve posted here. Hope this helps and you feel better soon.

So very sorry. I have had awful Fibromyalgia 22 Yrs so I can identify except for the hypermobility. Have you been tested for Eblo-Danlos Disease and for Rbeumatoid Arthritis? Sometimes Fibro and Ehrlo-Danlos occur together. Also do u have access to getting a permit card so u can purchase medical marijuana for pain?

Hi @timtoby, I'm sorry to hear that your pain is not being recognized by others. Of course, fellow patients here cannot diagnose you, but we can offer tips or areas that you can research to learn more.

You've gotten some great leads from members @ilikegreen @irr4et and @windyshores. You might want to read more about these conditions to help you talk with your parents and your doctor:
- What is the difference between joint hypermobility and joint hypermobility syndrome? https://my.clevelandclinic.org/health/diseases/21763-joint-hypermobility-syndrome
- Hypermobility spectrum disorders (HSD) https://www.ehlers-danlos.com/what-is-hsd/
- Ehlers-Danlos syndromes (EDS) https://www.ehlers-danlos.com/what-is-eds/
- Yoga for Hypermobility https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/yoga-for-hypermobility/
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/

Are you able to make an appointment with your doctor to investigate a cause and possibly confirm a diagnosis?

Hi @timtoby , So sorry to hear about your pain and you're feeling like you're not receiving much support from your mom. @colleenyoung1 and others here provided some great resources in the links, and the Ehlers-Danlos Syndrome Blog here is also a helpful starting point to learn more about EDS and hypermobility spectrum disorder (HSD).

Do you think you could ask your mom for some time to talk because you're worried, and share with her what you're learning about hypermobility? Would you be able to share with her, maybe some of the information from the sources above, especially highlighting any information that talks about the chronic pain that can be caused from hypermobility?

Unfortunately, it's really common for people (and even medical professionals) to overlook or even dismiss chronic pain, whether it turns out your pain is from hypermobility or not. I wish I could tell you everyone would always believe you, but it's usually not the case. But sometimes, if we can share the information and facts, it helps, especially when it's people who care about you.

It would be ideal if you could make an appointment with your doctor, and (even more ideal if they're supportive!) But I'm sure you probably would like relief now, as well as answers... If you're able to connect with your doctor, you could ask for a referral for physical therapy and ask for someone with experience with hypermobility, and that's usually a really accessible place to start.

Or if you want to learn more about it, this Jeannie Di Bon is a PT on YouTube who does work with the EDS Society. She has a lot of videos that explain how hypermobility can cause pain and other symptoms, and some of the types of exercises that might help: https://www.youtube.com/channel/UCh3dgBm_L5pwaeBQI-Q7yVw

I know it's tough, but hang in there. I was told the average time for diagnosis of something like EDS is at least 3 years, and you don't know for certain that's what it is yet. But you're already searching for information and advocating for yourself, trying to connect yourself to a support system, and that's going to help you the most.

thank you so much for the help!! i take advil sometimes because i already experience collapsing and struggle walking for long periods of time,
my jaw is always in a lot of pain so i understand that, I have ADHD and am likely on the autism spectrum and one of the main ways i fidget is by chewing which constantly strains my jaw joints 🙁

thank you so much for the help, ill try exercises, but it might be hard for me because i am also asthmatic

I am a teen for context, newly 15, so getting help is very hard for me since my mom doesn't believe me in the slightest. My boyfriend is also hypermobile and receives physical therapy, but my mom flat out told me even if I needed it she would not bring me because I have "too many appointments already" due to needing a dissociative specializing therapist and a psychiatrist

I want to try asking about a permit card since I live in a state with many dispensaries and where it is legal 🙂 I have not been tested for anything yet because of my mom not believing me, but as soon as I can I want to get tested for Hypermobile Elhers Danlos Syndrome, Rhuematoid Arthritis, and/or Generalised Hypermobility Spectrum Disorder, or possibly Fibromyalgia since I experience fatigue as well as the full body pain and hypermobility

Thank you so much for the help, I plan to make a google slide/google doc with links and describing my symptoms to show my general doctor when I go for my next check up! These links will be very helpful, I want to possibly try asking my mother if a virtual appointment would be possible.

I am very scared she will try to downplay my symptoms to my doctor though because of how much she does not believe me

That sounds like a great idea! I hope your mother won't downplay your symptoms, but hopefully she'll come around and your doctor will also want to hear your side of it. Either way, don't give up advocating for yourself. It can be really hard with chronic pain, no matter the cause, to find people and medical providers who will take you seriously, but I promise you, they are out there!

Hi, @emo is so right, do keep advocating for yourself.

I wanted to add that just because you have asthma doesn’t mean you can’t be active and exercise. According to https://www.lung.org/lung-health-diseases/lung-disease-lookup/asthma/managing-asthma/asthma-and-exercise : “In fact, many Olympians and professional athletes have asthma. As long as you manage your symptoms, you can participate in any sport or activity.” It also says: “Exercise is important for overall health as well as lung health, and there are many benefits of physical activity for people living with asthma. Daily exercise helps to improve your lungs capacity, in other words, the maximum amount of oxygen your body can use. Also, exercise increases blood flow to your lungs, promoting blood flow to the heart which pumps oxygen throughout your body. For example, people who exercise have more ability to pull oxygen from the lungs and into the blood that feeds the muscles that keep us going.” And because of our hypermobility our connective tissue needs all the oxygen it can get.

I know when you exercise your pain may increase. But there are ways to exercise that will not cause injury and can greatly improve your quality of life. This article has some good suggestions: https://medium.com/@jeanniehmyers/exercising-with-hypermobility-813bbee2243f . Cycling, swimming, hiking, and dancing are fun low-impact options.

Also do consider getting some fidget toys instead of chewing. Some suggestions are here: https://www.medicalnewstoday.com/articles/best-fidget-toys#fa-qs . I wish I hadn’t chewed so much gum during the pandemic and maybe now I wouldn’t have a jaw that locks and broken off bony spurs in my tmj that need to be removed in surgery next month. No more chewing gum for me; I learned my lesson.

Best luck on your journey to a strong, healthy you @timtoby.