Replies to This Discussion

Permalink Reply by Andrea Cleary on July 6, 2011 at 10:12am

I have an arthritic knee due to an accident years ago (not related to DMD in the least).

6 years ago (a year before Simon was diagnosed, though I knew something was up, but thought he had CP) during rehab after yet another knee surgery, the physios were commenting that they didn't understand why my hips are weak when I am extremely strong everywhere else, especially for a woman. (I'm slightly embarrassed when I can't even get my muscular arms into some blouses when trying on clothes.) Since we didn't know yet about the DMD, we all just dismissed it as not having walked very much with the knee pain waiting for the surgery.

Now your question really has me wondering if the two are related!!!

I have had shoulder bursitis off and on in the last 10 years, but thought it was just previous over use from when I used crutches for almost 2 years at the ages of 18 and 19. I have also had plantar fasciitis and Morton's neuroma on each foot, which was really painful.

Waiting to hear what others have to add to the discussion.

Good luck with the physio and treatment Mandy.

Andrea

Permalink Reply by Eileen DeLong on July 7, 2011 at 12:18pm

I am no doctor either but I believe you are on to something. I have been have hip pain and knee pain for a couple years now. My doctor keeps telling me it is because I am overweight, but I think it is because I am a carrier. We see Dr.Wong and she agrees with me that I am a Manisfesting carrier but my regular doctor just does not understand. What really worries me is that my Mom and 2 of my aunts have had both hips replaced and we know they are carriers. So thanks for telling us about the ITBFS. I just looked it up and this looks like what I have!

Permalink Reply by Mandy Kerr on July 7, 2011 at 12:32pm

Well Eileen, I just thought I would tell you I am 31 years old and not overweight and I have problems with both hips....used to be only the left hip but just within the last 6 months it has been both hips.  I agree with you that I don't think our GP's really know much information about carriers of DMD as there are only very who do actually do understand so I think it will be very difficult to prove these things which also make it very frustrating.  Well, I just thought I would share this and also the ITBFS.  I am hoping in the next few weeks of painful exercises that it will improve.  Otherwise, I will to go through worse things, such as suctioning (not sure how that works but I think it is with using suction cups and a machine and it pulsates and supposed to release the muscle).  My physiotherapist explained to me when a muscle gets that tight it starts to have tissue grow underneath the muscle and we have to loosen it to release the growth of tissue underneath it.  Well, I guess we will see what happens.

 

Eileen, you may want to see if you too can be referred to a physiotherapist.  I find they are very knowledgable and can assess you better than your GP can.

Permalink Reply by Eileen DeLong on July 8, 2011 at 10:54am

Thanks for sharing Mandy. I will look into a physiotherapist. I am really sore today.

Permalink Reply by Mandy Kerr on July 8, 2011 at 11:52am

Your welcome Eileen!  Good luck and let me know how it goes!  Take care.

Permalink Reply by Michelle LB on July 23, 2011 at 4:09am

I too experience knee and hip pain! About a year after I had my first son, my knee began to bother me very frequently. My son had not yet been diagnosed at the time and I did not have insurance, so I just dealt with it. But more recently, in the last two years, I have been diagnosed with bursitis. At first it was only my right hip, but now its in the left one as well. My knees still bother me but, its more like weakness and if I turn too quickly they give out on me with a quick shock of pain that goes away within a few minutes. I have no cardiac muscles issues, but I do have WPW, Wolfe Parkison White, an electrical short circuit which causes the heart to beat rapidly and has sent me into Atrial Fibrilation, this has nothing to do with my carrier status though. It was just lucky that I took the precaution to go to the cardiologist to get checked out because of the risk of cardic issues due to my carrier status, so please everyone make sure you go to the cardiologist and get your check ups, it probably saved my life. I am very interested to learn more about this ITBFS and see if this might apply to me.

Permalink Reply by Kathleen Drake on October 29, 2013 at 10:10am

I am having the EXACT same problem. I have had two shots in my right hip and my back. IT has now affected my left hip and am going for shots in Decemeber. I have heard that If you are a carrier, it could be the Manifest Carrier MD. which is we have more bad x chromosomes than good ones. I may be going to see my childrens MD dr. soon to have my CK checked. I truly think it has something to do with being a carrier.

Permalink Reply by Mandy Kerr on October 29, 2013 at 11:09am

My hips and back have been quite sore again.  I am seeing a physiatrist and she will be able to tell me whether it is DMD related or not as she deals just with muscles.  I have been quite stiff and sore lately and some mornings it is difficult to get out of bed.  If I am moving around I am not too bad but after sitting or laying for an extended period it is hard to move around.  I would like to get to the bottom of this.  My CK was checked less than 2 years ago and was around 425 which is about 3 times the normal amount.  This has to be carrier related.  I was told years ago that I was depressed and needed to be on an antidepressant.  Well, I have been on an antidepressant due to depression which was diagnosed 1.5 years ago.  I am on a good dose of this antidepressant and guess what I still have the same pains I had before I was put on the drug.  I will send a reply once I get some more information once I see the physiatrist and have some more insight.

Permalink Reply by Kathleen Drake on October 29, 2013 at 11:43am

That will be great. I don't think it is a coincidence that most of us CARRIERS are having the same syptoms. I do believe it is a defenite reflection of the disease. I am going to going to see the Dr. my kids saw. She specializes in MD and other Muscle diseases. I know she will be able to answer these questions. Best of luck Mandy and keep us posted.

Permalink Reply by Melanie Horton on October 29, 2013 at 12:45pm

Hi Everyone,

I am a DMD carrier and I too have hip and back issues.  I had horrible sciatic back pain for many years.  I too got the corisone shots several times.  This would help for a month or two and then would wear off and the pain would be right back.  Since then I have been seeing a chiropractor and this has been the only thing that can bring relief.  It took over a year of seeing the chiropractor 3 times a week but now I go only about 1x per month and the pain has not returned.   I have also had other muscle problems such as bad ankles and really weak hands and recently a problem with my thumb where I was told to not use my right hand for 8 weeks.  I finally ended up getting a cortisone shot in my thumb.   Shoulder and neck pain has also been a problem.  I think, as some of you that these muscle issues are carrier related.

 

The problem is, not much research is done to see how carriers are affected.  Rightly so, more emphasis is put into research into understanding and developing treatments for our brothers and sons.  It makes sense to me that carriers would have some issues as we have less dystrophin than other "normal" people and with X-activation we will have some cells making dystrophin and other cells not making dystrophin.  Perhaps, our hips or backs, or hands or whatever area is the problem have fewer dystrophin producing cells leading to weakness in these areas.  I'm not sure what doctors/medicine can do about this.  At least we can be aware that we can sometimes have cardiac issues and get check ups. 

 

Permalink Reply by Kathleen Drake on October 29, 2013 at 12:49pm

VERY GOOD POINT Melanie. I truly believe their needs to be research done for us carriers as well. In the long run, we suffer along side of our sons and unfortunately feel for our brothers. I will going to an MD specialist soon. I am hoping to get us all some answers. Hang in there ladies. TOGETHER, WE'VE GOT THIS.