Ehlers-Danlos syndrome question

Hello,

Thank you so much Dr J, for offering to help me.

As far as asking you a medical question as thanks for my troubles as you said…. I have Ehlers Danlos and I have so many questions/issues that it is very hard to just pick one…. I am very flexible and nothing stays in place where it should causing a lot of problems and pain. I currently take a high dose of Ibuprofen daily (Dr told me I could take up to 2400mg in 24 hour period at the most)….which worries me since this will be a permanent problem and I will need to take something for the rest of my life. If I dont take an NSAID I am miserable. They help 100% better then the serious pain medicines my Dr has prescribed.

I have had bloodwork that shows I dont have any complications from taking them at this time. I do believe however that maybe this is keeping me from having a menstrual period for over a year now. I can only have periods if I take a birth control pill which I dont take because my left leg feels numbish from the knee down when I do. I have asked my Drs why I dont have a period and all my labwork is correct for having one. They have no answers. I read online that when female girls goes on vacation they sometimes take a high dose of Motrin ahead of time so they wont have a period while vacationing. Could this be why Im not having one?…. and is this safe for me to not have a period if becasue of the Motrin?

I have a million other questions …many more serious then this but this is one that is always in the back of my mind and could be serious in the long run. Thanks for your help. I really appreciate everything. I have gone to many Drs and they are very limited in what they know or understand with Ehlers Danlos. I usually end up teaching them about it so i was so glad to actually see that you had mentioned the name Ehlers Danlos in one of your articles about arthritis. If you have any suggestions for me it would be great to hear. I have heard of simple things like taking a lot of vitamin c is helpful or Glucosimine Chondroitin. Some Drs say they are good for it, some say it is a waste of time. I just dont know what to think anymore as everyone has a different answer. Thanks..

Dr. Joshua answers:

I’m not very familiar with Ehlers-Danlos as I’m a neurosurgeon. However, taking 2400 mg / day of ibuprofen can be dangerous in the long run. It can damage your kidneys and lead to bleeding stomach ulcers, also possibly to morning headaches due to long term NSAID use. We know that a bleeding ulcer is a real and serious complication causing many deaths in the rheumatoid arthritis patient population. I recommend against such a high dose in the long term. On difficult days it’s OK to take a high dose, but not on a daily basis in the long run. Please consult your own doctor about this before changing your prescribed medication.

I have no idea why you should not have a period. I have very little medical history information about you. If you are underweight, that could be a reason, on the other hand if you are overweight, that could also be a reason. A gynecologist would be a better professional to answer this question.

Regarding the nutritional supplements you mentioned, glucosamine sulfate has been shown in some studies to be beneficial in the treatment of arthritis. Avocado Soybean unsaponifiables (ASU) have also shown promise, according to the trusted Cochrane.org medical reviews database. Link below. Also, methylsulfonylmethane (MSM) has shown promise in relieving arthritis symptoms. These may or may not be relevant to your condition. Do discuss these with your doctor if you’re interested in such treatment. Dr Joshua

Ref.

Herbal therapy for treating osteoarthritis Little CV, Parsons T, Logan S

Advertisement:

Tags: ehlers-danlos, herbal therapy, ibuprofen, menstrual periods, osteoarthritis

Discuss this topic on the Health Forum

   More answers in Muscles and Bones