We are a quarter of the way through 2011 and for people with EDS a lot can happen in 3 months.
Last time I posted things weren’t great and I was in abit of limbo-land waiting to see new drs and move on with new areas of my condition. Since then there have been some new issues to deal with as well as increased hope in other areas.
My GI issues have continued to be a focal point in my dr’s concerns but thankfully haven’t changed a huge amount since the beginning of the year.
I had tried a new drug that is being used in women with chronic dysmotility of the GI system but had to stop taking it after one month due to complications with it. It seems my body always finds a way to dash the hopes of me and my drs when we hear of a new wonder-drug that we think will be the answer.
My GI dr at my local hospital has had to admit defeat and can no longer treat me due to his lack of knowledge of EDS and the eventual failure of medication based treatment being an option.
I have now been referred to a specialist further afield who has a particular interest in severe dysmotility and unusual GI conditions. His treatment ideas are on the ‘radical’ side involving pacemakers for the stomach and other surgeries that wouldn’t normally be used for the problem he is treating but things have got to the point of having to try anything that might help.
My stomach is struggling to digest food properly and absorb nutrients so I am starting to experience symptoms of malnutrition mainly a lot of hair loss and sudden energy slumps. I am hoping that we can find a way to get things working again quickly before I have to start buying a lot of hats!
I am very lucky to have been referred to an orthopaedic surgeon who knows and understands EDS and what that means in terms of what we can realistically acheive. I was referred for my recurring hip subluxations/dislocations and increased pain in my hips and pelvis. At my first appointment he was very honest admitting that EDS can only be helped so much with surgery and that he would not be able to get me walking again. Finding out that eventually I will be unable to stand due to the effect the EDS is having on my knees and back was a shock but knowing this now means I can finally let go of the hope that I will one day wake up miraculously healed and be running and dancing down the high-street.
We are focussing on surgery that will make my hips much more stable in order to reduce the pain and make sitting in my wheelchair much more comfortable for long periods.
I am also halfway down the very long road of POTS investigations. POTS (postural orthostatic tachycardia syndrome) was first suspected in November following a fall I had. I am lucky that 3 out of the 5 drs I see regularly suspect I have POTS now as this has meant bypassing some of the unnecessary testing and loop-holes needed to get a referral to a cardiologist for the all-important Tilt Table Test which is the primary tool for diagnosis POTS. I still hope and pray that I don’t have POTS and the symptoms I have are down to a medication or drinking too much tea but it’s becoming harder for me to not prepare for a POTS diagnosis.
My tachycardia (fast heart rate) and low blood pressure is becoming more and more frequent and I now have to try to manage other possible POTS symptoms which only aggravate my EDS. Fatigue and ironically insomnia are worse than ever. I seem to only manage an hour or two out of bed at a time without ending up exhausted and feeling like I have ran the London Marathon. Nausea and dizziness are constant and never go away now and I have developed headaches that at times are very painful. Hopefully I will get a diagnosis (or more preferred a “You don’t have POTS”) soon and treatment that can get things back under control.
I am also now just waiting for the appointment letter for my powerchair (electric wheelchair) assessment which will bring a huge amount of freedom and opportunity to my life again.
Although I’m spending more time living life from my ever-loving bed, I am still hopeful as ever that if a cure isn’t found during my lifetime that at least my Drs can work together to find a combination of treatments for the different EDS problems that will give me back some of my life. While I wait I continue to be positive using my time to help raise awareness of EDS and support others who are just finding their feet in the overwhelming world that is Ehlers Danlos Syndrome.