I recently found out it is Laing Distal Myopathy and not Bethlem!
I still am a bit in your shoes and it's nice to be in touch with someone that understands.
Claire x
Last edited by moderator2; 08-10-2011 at 07:54 AM.
Would you mind describing your symptoms? Are they similar to Bethlem? I have contractures in my fingers, elbows, hips and knees and feel VERY tired all the time with significant muscle weakness. These are the major things I've encountered since I was 14.
Quote:
Originally Posted by Clairejp
Hey Melissa
I recently found out it is Laing Distal Myopathy and not Bethlem!
I still am a bit in your shoes and it's nice to be in touch with someone that understands.
Would you mind describing your symptoms? Are they similar to Bethlem? I have contractures in my fingers, elbows, hips and knees and feel VERY tired all the time with significant muscle weakness. These are the major things I've encountered since I was 14.
They are pretty similar to Bethlem; My first symptoms as a child were contractures of the Achilles tendons and of the fingers. I too have quite a bit of fatigue which I think happens in most of the muscular dystrophies; I only get it bad if I really over-do it.
They are pretty similar to Bethlem; My first symptoms as a child were contractures of the Achilles tendons and of the fingers. I too have quite a bit of fatigue which I think happens in most of the muscular dystrophies; I only get it bad if I really over-do it.
Hmm....I took a look at that webpage as well as a couple others...they are very similar. I don't have weakness in my fingers or really in my neck either (yet at least). I wonder if that is the major difference.
I usually only get mine bad when I really over-do it too. I've had mine since I was 14 (or that's the earliest I noticed pain symptoms). I've had the contractures all my life. What do you take for pain? I take Celebrex (only as needed). Have you had a baby yet? I'm curious as to if I will be able to have a baby naturally with my hip contractures.
Hmm....I took a look at that webpage as well as a couple others...they are very similar. I don't have weakness in my fingers or really in my neck either (yet at least). I wonder if that is the major difference.
I usually only get mine bad when I really over-do it too. I've had mine since I was 14 (or that's the earliest I noticed pain symptoms). I've had the contractures all my life. What do you take for pain? I take Celebrex (only as needed). Have you had a baby yet? I'm curious as to if I will be able to have a baby naturally with my hip contractures.
I had symptoms from about age 7 but was only diagnosed clinically at age 20.
I don't really take much pain medication as I have really bad digestive/acid problems at the moment and it seems to make it worse. I tend to use ibuprofen gels that you get in a tube and rub directly on the spot that hurts (usually my neck lol) I also sometimes sit with a hotwater bottle on my back or get a hot bath. It doesn't get rid of the stiffness and that completely but it all seems to help a bit!
I haven't had any children yet but I had the same concerns as you and was also worried about the extra weight etc and legs giving way.
I also have GERD and take medication for that (acid reflux). I haven't noticed that the Celebrex makes my GERD any worse though. Although I only take my pain meds on the REALLY bad days. I don't think I've heard of those ibuprofen gels but I will look for them! I notice that warm water helps me too. Well...GOOD LUCK! I guess we'll find out about having kids soon enough .
Last edited by moderator2; 08-10-2011 at 09:22 AM.
Thanks!
Do you mind me asking what caused your GERD? If you know?
I've had this acid reflux for 2 years and it has sent me insane sometimes!
I often wonder if it could be neuromuscular in origin? I'm having an endoscopy so the doctor's can maybe figure out what's going on down there lol
Claire
Last edited by moderator2; 08-10-2011 at 09:36 AM.
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Thanks!
Do you mind me asking what caused your GERD? If you know?
I've had this acid reflux for 2 years and it has sent me insane sometimes!
I often wonder if it could be neuromuscular in origin? I'm having an endoscopy so the doctor's can maybe figure out what's going on down there lol
Claire
No, I don't mind at all! They don't know what caused my GERD. They told me that some people just get it and some people don't. I do have gluten intolerance too (not an allergy). My GERD has been somewhat more alleviated by it. But I still need medicine. I think they've said in general that it's a loose "muscle" that open/closes when it's not supposed to and allows food up through the esophageous. Now that you mention that, that is a very good thought......maybe the muscle is weak because of a "neurmuscular disease?" I had never thought of that before. Please, if you remember, let me know what they find on your endoscopy.
P.S. The GERD drives me insane too when it flares up. It feels like there is literally a hole burning in my throat.
No, I don't mind at all! They don't know what caused my GERD. They told me that some people just get it and some people don't. I do have gluten intolerance too (not an allergy). My GERD has been somewhat more alleviated by it. But I still need medicine. I think they've said in general that it's a loose "muscle" that open/closes when it's not supposed to and allows food up through the esophageous. Now that you mention that, that is a very good thought......maybe the muscle is weak because of a "neurmuscular disease?" I had never thought of that before. Please, if you remember, let me know what they find on your endoscopy.
P.S. The GERD drives me insane too when it flares up. It feels like there is literally a hole burning in my throat.
I know, I hate it, when it gets really bad I feel like I have a big lump in my throat and I hate the feeling of acid/food coming up all the time
I will definitely let you know what happens with the endoscopy
Hopefully they will find out what's wrong. Hey you know what's weird, I also have a really bad Gluten intolerance! I had a test for Coelic disease about a year ago which came back negative but I had been off foods with gluten in for 6 months so don't know if that affected it? I don't want to force myself to eat bread etc just to get a positive result because it made me feel so ill eating foods with gluten in.
I often wonder if the years of eating foods with gluten damaged my stomach lining and maybe that's why I now have this acid reflux problem?
I know, I hate it, when it gets really bad I feel like I have a big lump in my throat and I hate the feeling of acid/food coming up all the time
I will definitely let you know what happens with the endoscopy
Hopefully they will find out what's wrong. Hey you know what's weird, I also have a really bad Gluten intolerance! I had a test for Coelic disease about a year ago which came back negative but I had been off foods with gluten in for 6 months so don't know if that affected it? I don't want to force myself to eat bread etc just to get a positive result because it made me feel so ill eating foods with gluten in.
I often wonder if the years of eating foods with gluten damaged my stomach lining and maybe that's why I now have this acid reflux problem?
Thanks!
You do?! That's crazy! I have been tested for Coeliac disease several times (even before I went gluten free 2 years ago) and they always came back negative. But after I tried going gluten free I immediately felt better after about a week. I used to get a really bloated stomach after eating wheat. I feel so much better digestively AND I don't feel as tired all the time. I wonder if the gluten intolerance was depleting me of vitamins and minerals because it wouldn't let me absorb all of the nutrients in foods. I still get tired sometimes now but it seems more geared from something muscle related than anything else. But anyways, I've heard that A LOT of times you don't get a positive result from the blood test anyways and then again, some people are just gluten intolerant and not full blown coeliac. That very well could be why you have acid reflux too. I think they are strongly linked that if you are gluten intolerant/celiac then you also usually have acid reflux. I never had an endoscopy done of my stomach but heard that if you've been gluten free then it still won't show signs of inflammation in the villi in your stomach. So I just decided to skip the test and eat how I feel best. If I didn't think it helped me that much I would keep eating wheat but this has been a major life change for me and I am so much happier for it. I hope they can help you too!
Yeah I hope it get's sorted, if I know what's going on then I'm hoping I'll be able to figure out how to sort it out.
I wasn't bothered about being formerly diagnosed with coeliac either; I did an elimination diet and it is definitely wheat/gluten that causes me big problems. Same as you I get really bad bloating etc and I ended up anaemic, but that's all sorted now. The only thing is since I've had this acid reflux I've had the big bloating again so I've been wondering whether I have some other intolerance as well? Maybe soya or something? Anyway hopefully I'll find out soon! I'll keep you posted, and like I said feel free to post here and we can share our woes
Claire
Last edited by moderator2; 08-10-2011 at 01:33 PM.
Yeah I hope it get's sorted, if I know what's going on then I'm hoping I'll be able to figure out how to sort it out.
I wasn't bothered about being formerly diagnosed with coeliac either; I did an elimination diet and it is definitely wheat/gluten that causes me big problems. Same as you I get really bad bloating etc and I ended up anaemic, but that's all sorted now. The only thing is since I've had this acid reflux I've had the big bloating again so I've been wondering whether I have some other intolerance as well? Maybe soya or something? Anyway hopefully I'll find out soon! I'll keep you posted, and like I said feel free to post here and we can share our woes
Claire
I didn't end up anemic, somehow. But yes I still have bloating and I KNOW it's due to soy. I stay away from soy things and my bloating pretty much goes away. I should have mentioned that before. I lactose intolerant, gluten intolerant and soy intolerant. Those are the MAJOR things I've found.
Today I was feeling pretty bad. I started exercising last night and although I know you'll be sore the next day, my arms were shaking and I could barely move them, same with my legs. They didn't just hurt, there was muscle weakness too. I didn't even work out that hard. My shoulders are probably the weakest part of my body. I dunno why that is though. Anyways, that's my "woes" for today. I don't usually feel this bad. My muscles feel like they are "burning" all the time like I am continuously exercising and also just achy. At least that's how I've described it to doctors. How do you describe your muscle pain?
I didn't end up anemic, somehow. But yes I still have bloating and I KNOW it's due to soy. I stay away from soy things and my bloating pretty much goes away. I should have mentioned that before. I lactose intolerant, gluten intolerant and soy intolerant. Those are the MAJOR things I've found.
Today I was feeling pretty bad. I started exercising last night and although I know you'll be sore the next day, my arms were shaking and I could barely move them, same with my legs. They didn't just hurt, there was muscle weakness too. I didn't even work out that hard. My shoulders are probably the weakest part of my body. I dunno why that is though. Anyways, that's my "woes" for today. I don't usually feel this bad. My muscles feel like they are "burning" all the time like I am continuously exercising and also just achy. At least that's how I've described it to doctors. How do you describe your muscle pain?
Hey I don't want to come across patronising or anything when I say this but you should be careful how much exercise you do; what type of exercise do you do? With muscle diseases I think you have to be really careful not to over-do it but at the same time keep the healthy or stronger muscles active and do gentle stretches or maybe swimming etc. I know that burning feeling you are talking about and I get it when I've gone over my limits Have you been able too see a physiotherapist or anything? I'm waiting to see one at the moment.
The muscle pain I get is the same as you; burning feeling mainly in shoulders and legs if i do too much. I sometimes get pain from being really stiff; mainly in legs. But again, it's usually if I've done too much I think.
Thanks for the info about intolerances, I think I might try cutting soy out for a bit and see if it does anything
Hey I don't want to come across patronising or anything when I say this but you should be careful how much exercise you do; what type of exercise do you do? With muscle diseases I think you have to be really careful not to over-do it but at the same time keep the healthy or stronger muscles active and do gentle stretches or maybe swimming etc. I know that burning feeling you are talking about and I get it when I've gone over my limits Have you been able too see a physiotherapist or anything? I'm waiting to see one at the moment.
The muscle pain I get is the same as you; burning feeling mainly in shoulders and legs if i do too much. I sometimes get pain from being really stiff; mainly in legs. But again, it's usually if I've done too much I think.
Thanks for the info about intolerances, I think I might try cutting soy out for a bit and see if it does anything
I don't take it as patronizing at all. I'm really new to the Bethlem's diagnosis. Of course, I know that hurt A LOT after any exercise but my doctors hasn't told me what I can or can't do. I didn't think what I did last night was over-doing it while I was doing it, of course. But low and behold this morning I am horrible. I did dancing for about an hour and also did about 20 pushups (that's ALL I could manage). You're right though I should do gentle stretching, swimming or even stationary bike riding instead. I just started going to a physical therapist (one time) the other day and will continue with him next week. I suppose he will let me know what I should/shoudn't be doing then?! When I used to tell doctors that my muscles have a burning feeling they would ALL tell me they didn't know what that was and that I was making it up. I have seen over 20 doctors to finally get this diagnosis. I usually always feel my burning pain (even when not overexerting) but yes it is worse when I over do it. I am also VERY stiff, I blame that on the contractures though. I can't straighten anything so I look really stiff instead of fluid when I walk or sit. Let me know how the cutting out the soy goes!!
I don't take it as patronizing at all. I'm really new to the Bethlem's diagnosis. Of course, I know that hurt A LOT after any exercise but my doctors hasn't told me what I can or can't do. I didn't think what I did last night was over-doing it while I was doing it, of course. But low and behold this morning I am horrible. I did dancing for about an hour and also did about 20 pushups (that's ALL I could manage). You're right though I should do gentle stretching, swimming or even stationary bike riding instead. I just started going to a physical therapist (one time) the other day and will continue with him next week. I suppose he will let me know what I should/shoudn't be doing then?! When I used to tell doctors that my muscles have a burning feeling they would ALL tell me they didn't know what that was and that I was making it up. I have seen over 20 doctors to finally get this diagnosis. I usually always feel my burning pain (even when not overexerting) but yes it is worse when I over do it. I am also VERY stiff, I blame that on the contractures though. I can't straighten anything so I look really stiff instead of fluid when I walk or sit. Let me know how the cutting out the soy goes!!
Hey sorry I missed this last post!
I asked my geneticist about getting physiotherapy today as my legs and lower back are constantly stiff!! I really want to go swimming again but I'm a bit scared to now as the last time I went my leg muscles froze up and I couldn't move them How do you get on swimming? Has that ever happened to you?
Hey sorry I missed this last post!
I asked my geneticist about getting physiotherapy today as my legs and lower back are constantly stiff!! I really want to go swimming again but I'm a bit scared to now as the last time I went my leg muscles froze up and I couldn't move them How do you get on swimming? Has that ever happened to you?
That's ok! I hope they write you a prescription to see a physical therapist! I've only been once but the exercises he showed me to do at home have helped me out quite a bit more than I expected. With swimming, no that has never happened to me, thankfully. I find my hardest thing is stairs and walking too much (even on a treadmill) makes my lower back SO tight and stiff and sore. It almost brings me to tears. Everyone thinks I'm being a big baby about exercising but it's not that. It just honestly and really hurts that bad. Does that happen to you?
That's ok! I hope they write you a prescription to see a physical therapist! I've only been once but the exercises he showed me to do at home have helped me out quite a bit more than I expected. With swimming, no that has never happened to me, thankfully. I find my hardest thing is stairs and walking too much (even on a treadmill) makes my lower back SO tight and stiff and sore. It almost brings me to tears. Everyone thinks I'm being a big baby about exercising but it's not that. It just honestly and really hurts that bad. Does that happen to you?
Yeah I think everyone thinks I'm a bit of a wimp but my lower back also gets really really stiff and sore; I think the pain comes from it stiffening up so much. When it stiffens up it makes me walk really funny like Frankenstein's monster (secret nickname for myself lol) I think it might be stairs and hills/slopes (it is really hilly where I live!) that set mine off. My legs can get quite bad with stiffness but luckily that usually wears off after a day or so but the lower back stiffness can hang around for days
Yeah I think everyone thinks I'm a bit of a wimp but my lower back also gets really really stiff and sore; I think the pain comes from it stiffening up so much. When it stiffens up it makes me walk really funny like Frankenstein's monster (secret nickname for myself lol) I think it might be stairs and hills/slopes (it is really hilly where I live!) that set mine off. My legs can get quite bad with stiffness but luckily that usually wears off after a day or so but the lower back stiffness can hang around for days
Lol that's actually a very accurate quote for what I look like when I walk as well . My legs usually hurt but your right if they hurt really bad from walking that day and I go to sleep for the night, the next morning my legs feel a lot better. I am the SAME way with my back as you. It takes a lot longer for it to go away and it seems like lately it won't go away anymore. Maybe it's here to stay....hmm oh well. I intend to pay for the genetic testing to "prove to myself" that this is what I have. It's been 10 years that I've been searching for a diagnosis and this has been the closest thing the doctors have ever come up with. I feel without too much uncertainty that this is definitely it (besides what the doctors tell me). How long have you been searching?
Last edited by nicegrl578; 08-11-2011 at 01:42 PM.
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Anyway hopefully I'll find out soon! I'll keep you posted, and like I said feel free to post here and we can share our woes 
Hey sorry I missed this last post! 
lol) I think it might be stairs and hills/slopes (it is really hilly where I live!) that set mine off. My legs can get quite bad with stiffness but luckily that usually wears off after a day or so but the lower back stiffness can hang around for days 
. My legs usually hurt but your right if they hurt really bad from walking that day and I go to sleep for the night, the next morning my legs feel a lot better. I am the SAME way with my back as you. It takes a lot longer for it to go away and it seems like lately it won't go away anymore. Maybe it's here to stay....hmm oh well. I intend to pay for the genetic testing to "prove to myself" that this is what I have. It's been 10 years that I've been searching for a diagnosis and this has been the closest thing the doctors have ever come up with. I feel without too much uncertainty that this is definitely it (besides what the doctors tell me). How long have you been searching?
