When I was first diagnosed with Ehlers Danlos Syndrome, there was a great sense of relief. I had been feeling so bad for so long, and now there was a name for this illness. Finding the name for my illness meant that the doctor would give me a treatment and then I could get better. Right?
Next, I found out that there is no cure or treatment for EDS. Doctors only treat the symptoms. And, they send you from one specialist to another. Then, the medical system gives you their treatment that works on “normal” people with that symptom. Many of these treatments don’t work the same way or at all for those of us with EDS. So, you end up with tons of pills that may or may not help.
Here are the list of symptoms of EDS (hypermobility type) that I’ve experienced:
joint hypermobility – loose, unstable joints that dislocate or subluxate easily – joint pain and clicking joints – extreme tiredness (fatigue) – skin that bruises easily – digestive problems – such as heartburn – dizziness and an increased heart rate after standing up – problems with internal organs, such as organ prolapse – thin skin – scoliosis
I take medicine for the joint pain, heartburn, and fast heart rate. The only medicine for my pain is Naproxen and a muscle relaxer. Out of all my pills, I can only tell that the OTC Naproxen helps.
With my diagnosis of EDS, the specialists were there to treat one symptom at a time. But, most doctors I went to did tons of tests. The blood tests helped to uncover many other problems. They call these co-morbid diseases. They aren’t “caused” by the EDS, but they tend to run along with having EDS.
Here are all the diagnosis’s that came after the EDS diagnosis:
Sjogren’s Syndrome – Small Fiber Neuropathy – Osteoarthritis – Ostopenia – Fibroadenoma – Reynaud’s Disease – Sleep Apnea – Mast Cell Activation Disorder – Chronic Migraine – Dental Problems – Skin problems (psoriasis/eczema) – Orthostatic intolerances
With each of these new diseases/disorders came a new specialist. With each new specialist came new appointments, tests, and treatments. All of this comes at a stiff price. The price is very high with the bills, but also the side-effects to the medications prescribed. I take meds for the Sjogren’s Syndrome, SFN, MCAD, eczema,and use a CPAP for the sleep apnea. I also take meds for my heart disease, Left Branch Bundle Block and high cholesterol.
The really sad thing is that there is nothing to cure the pain or fatigue. Pain medicine is no longer being prescribed and the fatigue is overwhelming. So, I just take my Naproxen and try to survive. Right now, surviving means resting 95% of the day.
I began my journey trying to get help for the pain and fatigue in 2011 and don’t seem to have made any progress. All I’ve done in this time period is find out that I have a ton of medical problems. All the doctors say, “you’re a complex case”. Sometimes I think all the meds aren’t worth it, but I’m not ready to give them up, either.
Yesterday, I found out one diagnosis that was negative. I don’t have breast cancer! I’m very thankful for this wonderful news. Next week I’ll return to my cardiologist to discuss the next step to take with the LBBB. I want to discuss the possibility of a pacemaker with her. If that will correct the LBBB, it will be worth it to me.
I just want to feel better. And, I wish that some of these gifts could be “re-gifted”??? Sick joke, I know. It’s better to laugh 🙂
@2019, copyright Lisa Ehrman