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Hi,
My name is Megan and I am 26 years old. Over the past 5 years, I have had many “health issues.” I can email a copy of my health timeline if anyone would like to see, but these are some of my “health issues”:Lower right back/hip/sacro-iliac joint/pelvis/sciatica (sacro-iliac joint “goes out and slides out”);Right jaw-TMJ (Has gone out of place before); Right shoulder;Spine pain on right side; Neck pain on right side/rubbing and clicking; Left knee pain, history of 2 ACL reconstructions; Pain/rubbing/movement at other joints (left clavicle); Rubbing and clicking of joints with certain movements; Excessive sweating/intolerance to heat/regulating body temperature; Bladder issues, gynecological issues; Issues on my periods including: dizziness and feeling like going to pass out, history of passing out on periods with severe menstrual cramps, history of hives and strange skin reactions (birth control has somewhat helped), Arms/hands feel weird/no blood flow?/arms seem weak, significant itching, Significantly increased pain around my joints when I’m on my period; Also getting dizzy during other parts of my day (From sitting to standing, lying down to standing); Bowel issues, (predominately constipation; Poor sleep.
I have been living with a diagnosis of fibromyalgia/Chronic Fatigue Syndrome. My physical therapist has told me that my joints are hypermobile, especially my pelvis. My orthopedic surgeon has told me I have very loose knees/increased laxity (had 2 ACL reconstructions on my left knee). My entire life I have been incredibly flexible and have been told I have “loose joints” and am double-jointed. I decided to research treatment for hypermobile pelvis, in addition to seeing my physical therapist. I had no idea I would find out that there is something called “hypermobility syndrome.” After researching this, I called my mom and told her about it, and was surprised when she told me that 22 years ago she was told by a doctor that she had hypermobility syndrome. I then visited my rheumatologist, and mentioned hypermobility syndrome, upon which he said he was not an expert on the subject, but would re-examine me. He told me that I demonstrated hypermobility, but that he did not want to take away a diagnosis of fibromyalgia since I had tenderness at the 18 points, and muscle pain.
My mother recently accompanied me to a doctor in Indiana. I can only describe my experience with this doctor as a “bad dream.” I was referred to this doctor by a Connective Tissue Clinic who stated they refer to this doctor because he believes EDS and Hypermobility Syndrome are one in the same. He also has a form of Ehlers-Danlos Syndrome, which to me was promising because I thought he would take time to really listen to what I was saying. I’d like to describe the doctor’s visit as objectively as possible. The doctor began the visit with a 30 question yes/no checklist including questions such as “Do you have nausea?” “Do you have anxiety?” “Do you get depressed?” I realize that I made a few mistakes during the doctor’s visit, including saying “yes” to anxiety. Unfortunately, I become quite emotional with doctors, especially when I feel like professionals haven’t listened to me throughout the past few years, and started to cry. I felt like the doctor made a snap judgment of me. I knew part way through the appointment that he was hearing me but wasn’t listening to me.
After the series of questions, the doctor read through my health history, completed the Beighton Criteria on me, (9 point scale) and examined my ankles and feet while I was sitting.
After completing the Beighton Criteria on me and examining my ankles and feet while sitting, the doctor also examined my mother. I proceeded to explain to the doctor my biggest area of pain was my back (sacroiliac joint) and that it moves and that it is not always in place, and tried to discuss with him the other areas of pain that I have (shoulder, jaw, spine). He asked me if I have ever dislocated a joint before, to which I responded my jaw and back (although I guess I used the wrong terminology as I meant my sacroiliac joint). He then proceeded to dislocate all the joints in his body in front of my mother and I, and told us that he doesn’t believe that I have dislocated any of my joints, if anything my jaw. Subsequently, he described EDS patients which he sees that have various facial characteristics, severe scarring and deformities, skin hyperextensibility and that they are not able to function. As an individual with EDS himself (vascular or classic?) he pulled up his pants and showed severe scarring and hand deformities. He stated that while I am functioning at a low level/getting by, I do not have these features and that I am not severe.The doctor then told my mother that she definitely has EDS Hypermobility type, and that he isn’t confident enough to tell me that I do. He stated that I have laxity in my joints and that some of my joints are hypermobile, and that I may express part of my mother’s genotype, but not all of it. Strangely, my mother has had no joint issues or areas of pain since she was my age, while I have chronic pain. He told me the main reason he thinks I do not have hypermobility is that I do not have as extensible skin as my mother, and no bruising/scarring as one would expect in EDS. My mother then stated that I can contort my body in different ways and asked me to show him, which I did. I demonstrated how I can touch my elbows behind my back and move my shoulders beyond their normal range. And I then proceeded to demonstrate my human pretzel, while it was very uncomfortable on my lower right back/hip.
At the end of this appointment, I felt confused and lost. I am reaching out for any info/help/referrals to doctors in the Chicagoland area.
Thanks
MeganHi Megan, So that no one thinks we are ignoring you, I wanted to comment to everyone that we have been corresponding via email. My friends, dear Megan dealt with something that is all to familiar to many of us — a doctor who just didn’t “get it”. She will be seeing a GOOD geneticist (right, Sweetie?) and with everyone’s help, let’s see if we can guide her toward compassionate and knowledgeable doctors, OK? Hang in — you’re doing great!
Hi,
Yes, I’m calling tomorrow to schedule an appointment with a geneticist in Baltimore 🙂
I am praying that this time, I won’t feel so judged. Thank you for all of your help and kind words.Hi,
Yes, I’m calling tomorrow to schedule an appointment with a geneticist in Baltimore 🙂
I am praying that this time, I won’t feel so judged. Thank you for all of your help and kind words.Please let us know how it goes, Megan! My guess is, you’ll be AMAZED at the difference in the level of care and caring you receive. Big hug…
Megan, How disappointing! It sounds like he is a rare example of having
EDS making him LESS understaning, because he doesn’t understand how different
each case can be. I’m not a doctor, just a mother of child with similar symptoms,
however as I was reading your post EDS/POTS came to mind. I believe that
the primary condition of EDS causes a domino effect that leads to brain/spine
pressure from the unstable ocipital antioaxel ligament. That the brain pressure
leads to Dyaautonomia/POTS, that causes a myriad of symptoms, and that no two
people present exactly the same. Good Luck, never give up! My daughter is still
being told its psychological even though she has been dx with hypermobility, and POTS.
The doctors didn’t discover the POTS, I did from researching, then had to push for her to
be tested. It took asking 4 doctors, one tested her wrong, so said she didn’t have it.
Also its common for symptoms to get worse during puberty, and menstration.Jesslynn,
I’ve learned that I have to be my own advocate. I’ve been with me for 26 years, so I know my body the best, unfortunately doctors don’t always agree. How old is your daughter? I am working on researching and learning more about POTS. Dr. Diana’s information has been very very helpful, I just need to find a doctor! I’m planning to go across the country to a doctor, if that’s what it takes to get the correct diagnosis, etc. from a knowledgable doctor.I am curious about birth control and menstration. My gynecologist just switched me to “low loestrin” instead of “loestrin.” She thinks it could help by keeping me on some form of hormone during the 4 days of my period. Maybe I should post a new topic to ask people about it.
Jesslynn,
I’ve learned that I have to be my own advocate. I’ve been with me for 26 years, so I know my body the best, unfortunately doctors don’t always agree. How old is your daughter? I am working on researching and learning more about POTS. Dr. Diana’s information has been very very helpful, I just need to find a doctor! I’m planning to go across the country to a doctor, if that’s what it takes to get the correct diagnosis, etc. from a knowledgable doctor.I am curious about birth control and menstration. My gynecologist just switched me to “low loestrin” instead of “loestrin.” She thinks it could help by keeping me on some form of hormone during the 4 days of my period. Maybe I should post a new topic to ask people about it.
Hi Megan, How are you doing, Sweetie? I’ve also made my appointment to make my cross-country trek to see my doctor (Dr. Francomano). It is so worth whatever it takes me to get there. No more “suboptimal” (ahem) docs for me! It really gets my mast cells going just thinking about it! I think a thread on stopping our periods would be a great one. I think I mentioned to you that I certainly stopped mine! I, too, went on a low dose pill that had just enough hormone to stop the periods and I stayed with it for over 2 years. Then I tried without it, just to test everything out. I did much better then. Most of us do. There is no medical reason for us to have a period, so I don’t think your doctor will have any problem keeping you on it as long as you want. Big hug,
Dr. Diana,
Can you explain what you did/or took to stop your periods? My dr. tried Yasmin with the hopes of doing it for several months without break (skipping the week of sugar pills), but I all did was bleed non stop from the time I started it for 3 weeks. That was NOT helpful at all.My doctor is considering having me do 10 mg of prednisone a day to help stabilize my adrenals, but that won’t stop those whacky female hormones and periods, will it? My symptoms are SO MUCH WORSE the day before through the second day of my period. It is a for sure spend at least a day in bed if not two days!
Thanks so much for your help!
Dr. Diana,
Can you explain what you did/or took to stop your periods? My dr. tried Yasmin with the hopes of doing it for several months without break (skipping the week of sugar pills), but I all did was bleed non stop from the time I started it for 3 weeks. That was NOT helpful at all.My doctor is considering having me do 10 mg of prednisone a day to help stabilize my adrenals, but that won’t stop those whacky female hormones and periods, will it? My symptoms are SO MUCH WORSE the day before through the second day of my period. It is a for sure spend at least a day in bed if not two days!
Thanks so much for your help!
Everybody is so different, but my doctor put me on a low dose estrogen pill and that did the trick. Pretty much. Ha. I had a tiny bit of break-through bleeding on some days, but otherwise, it was GREAT. I hope that helps, Hon!
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