hypermobility. Unexplained muscle pain

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    Hi,

    I've been struggling for quite a while now and would appreciate any answers. A couple of months before I turned 19 I started to get different aches and pains in my hands consistent with overuse injuries as I type a lot which would stop when I rested. However over the following months it gradually got worse and pain spread to my fingers, arms, shoulders, back, neck and even more strangely similar symptoms in my feet , ankles and legs. Sometimes my thumbs would dislocate when making a fist and my shoulder would pop when lying down. Other times my toes would go into a snapping frenzy as if the tendons were inflamed and and my knees would crack leaving me unable to walk properly or hold a cup,pen for any object for an extended period of time.
    Eventually those symptoms settled down however I was never really able to feel the same in my body again. I feel like everywhere is very tense and stiff, sometimes if I massage a certain area I can hear a loud pop and the pain is relieved temporarily but then that stiffness comes back and I can pop it again, I can even do this in my fingertips and toes. nowadays typing and writing is okay for me in moderation but doing simple task like cleaning folding just using my hands normally causes them to your achy heavy and fatigued. No rheumatologist, GP or physiotherapist can seem to explain these symptoms but note that I'm hyper mobile and assume it must be hypermobility syndrome. physiotherapy offered me acupuncture but she discharged me after one session claiming it wouldn't help.. Pain killers actually seem to make the pain worse. I practice yoga and Pilates regularly but often end up hurting myself. I'm now applying for disability at university and feeling helpless. I'm now 20 btw. Was wondering if anyone had any similar experiences and could offer any advice. Thanks for reading all of this!
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    (Original post by Anonymous)
    Hi,

    I've been struggling for quite a while now and would appreciate any answers. A couple of months before I turned 19 I started to get different aches and pains in my hands consistent with overuse injuries as I type a lot which would stop when I rested. However over the following months it gradually got worse and pain spread to my fingers, arms, shoulders, back, neck and even more strangely similar symptoms in my feet , ankles and legs. Sometimes my thumbs would dislocate when making a fist and my shoulder would pop when lying down. Other times my toes would go into a snapping frenzy as if the tendons were inflamed and and my knees would crack leaving me unable to walk properly or hold a cup,pen for any object for an extended period of time.
    Eventually those symptoms settled down however I was never really able to feel the same in my body again. I feel like everywhere is very tense and stiff, sometimes if I massage a certain area I can hear a loud pop and the pain is relieved temporarily but then that stiffness comes back and I can pop it again, I can even do this in my fingertips and toes. nowadays typing and writing is okay for me in moderation but doing simple task like cleaning folding just using my hands normally causes them to your achy heavy and fatigued. No rheumatologist, GP or physiotherapist can seem to explain these symptoms but note that I'm hyper mobile and assume it must be hypermobility syndrome. physiotherapy offered me acupuncture but she discharged me after one session claiming it wouldn't help.. Pain killers actually seem to make the pain worse. I practice yoga and Pilates regularly but often end up hurting myself. I'm now applying for disability at university and feeling helpless. I'm now 20 btw. Was wondering if anyone had any similar experiences and could offer any advice. Thanks for reading all of this!
    I have hypermobile joints and find I have similar problems, although I have a million other symptoms as well. No one has been able to help me too much so far either. You just have to really listen to your body. Take regular breaks, but don't go weeks without doing anything. I used to wear supports on my ankles and knees because I used to have a lot of problems with them. I find making things as easy as possible helps. Things like using ergonomic mousepads and keyboards with your computer, and ergonomic pens for writing make life a bit less painful. I also find that having rails in the bathroom helps a lot. Because of my ankles being so bad, which leads to my knees and hips slipping around, I pick my shoes very carefully. I saw a podiatrist and wore orthotic insoles for years to help me stand better which made the world of difference. I did a bit of physio but found it didn't work and actually made things worse, although a visit to the chiropractor did make me feel a bit better for a few days. It wasn't worth the money though. It would've cost me over £100 a week to feel a bit better and I couldn't afford it. I hope some of this might give you an idea of one or two things to try. I know it's an awful situation, but I hope things get a bit better for you. All the best!
    • Thread Starter
    #1

    Hey Chelsea, thanks for your response
    I know exactly what you mean when you say you have a lot of symptoms, sometimes I have really strange symptoms for only a few weeks or maybe months and then they'll just go away.
    sometimes they are similar to another joint condition so it is rather confusing and the doctor ends up looking at me like I am a nutcase. if you don't mind me asking how long have you had issues with your hyper mobile joints and are you studying at the moment? I don't really know anybody with similar conditions and I'm curious to know how other people cope. I'm very glad that you found relief with the insoles. I've completely flat feet so sometimes I tend to get pain like that too. Interesting what you say about physiotherapy, on the NHS they haven't offered me anything other than acupuncture which they stopped after one session, but privately I went to one who suggested a sports massage, but like you said it difficult and I just don't have the funds right out. yes I think it's all about finding what works for you and sticking to it. with the ergonomic equipments, thankfully my University is providing it, hopefully I can just find ways to work more ergonomically overall. All the best to you all also
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    (Original post by Anonymous)
    Hey Chelsea, thanks for your response
    I know exactly what you mean when you say you have a lot of symptoms, sometimes I have really strange symptoms for only a few weeks or maybe months and then they'll just go away.
    sometimes they are similar to another joint condition so it is rather confusing and the doctor ends up looking at me like I am a nutcase. if you don't mind me asking how long have you had issues with your hyper mobile joints and are you studying at the moment? I don't really know anybody with similar conditions and I'm curious to know how other people cope. I'm very glad that you found relief with the insoles. I've completely flat feet so sometimes I tend to get pain like that too. Interesting what you say about physiotherapy, on the NHS they haven't offered me anything other than acupuncture which they stopped after one session, but privately I went to one who suggested a sports massage, but like you said it difficult and I just don't have the funds right out. yes I think it's all about finding what works for you and sticking to it. with the ergonomic equipments, thankfully my University is providing it, hopefully I can just find ways to work more ergonomically overall. All the best to you all also
    I've had issues with hypermobility my whole life. When I started walking, it was noticed quickly in my hips. They did X-Rays and everything because they hadn't seen it so young before and wanted to investigate everything. It's worth asking if a podiatrist might be able to help you with your feet, and if your doctor thinks physio might help you as well. If your doctor agrees, you'll be able to get a referral. I have chronic fatigue syndrome, so I ended up having to drop out of college after a year. I'm going back this year (after a year out), but there's agreements that I'll get a pass to use the lifts and stuff like that, and my department is close to the main entrance. I'm not really sure how it's going to go but I feel like I definitely did the right thing. It's good to hear your uni is helping you out! You'll be able to report to them how things are going over the year as well and if you need even more support so that's good
    • Thread Starter
    #1

    I see, I was told that when I was younger I was always falling down very clumsy and started walking really late. guess hypermobility does show up early. So you doing your a -levels then?
    Glad that you feel good about your decision, as long as you think it was the right thing and now you get the adjustments you need then it all should go a lot easier for you. I took a year out of University after my first year because things got so difficult and suffered from some depression. Sorry to hear about the chronic fatigue syndrome, that must make things very difficult. yes I'll see what the doctors offer me now that I have this diagnosis and see if they are any help or not. Just out of curiosity Is there any job that you have found okay to manage whilst having this condition? I ask because to be honest I'm thinking of trying to get my independence back a littl eand feeling like I can do things but just concerned about what I can manage.
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    (Original post by Anonymous)
    I see, I was told that when I was younger I was always falling down very clumsy and started walking really late. guess hypermobility does show up early. So you doing your a -levels then?
    Glad that you feel good about your decision, as long as you think it was the right thing and now you get the adjustments you need then it all should go a lot easier for you. I took a year out of University after my first year because things got so difficult and suffered from some depression. Sorry to hear about the chronic fatigue syndrome, that must make things very difficult. yes I'll see what the doctors offer me now that I have this diagnosis and see if they are any help or not. Just out of curiosity Is there any job that you have found okay to manage whilst having this condition? I ask because to be honest I'm thinking of trying to get my independence back a littl eand feeling like I can do things but just concerned about what I can manage.
    Yeah, I was a lot like that. I started walking quite late and was very clumsy. I started back at my BTEC on Monday. I decided to go to college and do BTEC because it requires me to be in 2.5-3 days a week rather than 5. I've tried retail but that can be difficult, what with being up on your feet all day. Last time I was looking, I was looking for admin jobs. Something where I could be sat down and working at a computer, but would be able to get up and walk around when needed, and of course I'd be able to get special equipment to make the job easier on me whereas in retail it was quite difficult to do
    • Thread Starter
    #1

    Hi Chelsea,
    sorry I not been able to respond sooner. Retail does seem a bit fast pace so I get what you mean, I hope everything is going well in college now, it's been really good to just hear somebody else with similar experiences that is coping! Do you find that your doctors are quite understanding of what goes on with you because mine seem to be completely baffled and a bit rude. Anyway I wish you the very best of luck and will stop bombarding you with so many questions lol. feel free to contact me or private message me if there's anything you want to talk about :-)
 
 
 
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