I have been diagnosed with Ehlers-Danlos syndrome joint specific hypermobility it can be severly painful and debilitating. It is a famlial generic disorder and it is with me for life. It can take many forms, for those who aren't familiar with it there is a full spectrum of the disorder which affects collagen in the body. It has contributed to osteoarthritis in all of my major joints, and several locations on my back and at the top of my neck. I also have scoliosis in my lumbar region of my back which was very mild growing up, but has continued to worsen with time. I just got injections for this under anesthesia and am hoping they will help with the pain from the nerve inflamation and and arthritis in the lumbar region of my back. I have had my right knee completely replaced, and need a replacement done to my left knee also. I also had severe stage 4 endometriosis I found out when I went in for a laproscopic hysterectomy surgery and came out 5 hours later with an 8" horizontal scar through my lower abdomen.according to the doctor the worst endometriosis he had seen in 20 years it was every where including multiple cysts, bowel and bladder reconstruction, and 3 periods per month due to the internal bleeding from all the other locations in my abdomen. During these cycles my pain was excruciating.The Dr. told my family that I had to have been suffering from this for over 20 years. I am still healing as the surgery was completed on July 1st 2015 and I was completely and put capacitated until the end of August. I have severe pain in my lower abdominal muscles and other places which have not completely healed. I also have IBS and GERD yay. During v years and months prior to the surgery 3 other critically ill members of my immediate family. This of course left me extremely exhausted and in even more pain.
Initially when I presented with all of the osteoarthritis and eventually ehlers-danlos syndrome and the other issues I was prescribed hydrocodone 10 /325 every 6 hours. I was taking it four times a day and as needed for breakthrough pain during the middle of the night. Through the course of all of these illnesses and my caring for others I came to have panic attacks and was diagnosed with an anxiety disorder and major depression. I was put on xanax xr 2 milligrams and Brintilex and stepped up to 20 milligrams per day of that. I was getting along much better and after my knee replacement and surgery. So, I myself reduced my hydrocodone down to 2 times a day 3x if there is extreme breakthrough pain.
Now that I've been on these medicines for over a year and a half, even though I've had multiple surgeries and weaned down on the hydrocodone, I am getting bombarded on all sides by my family this includes my husband, multiple siblings, and parents etc, about the use hydrocodone 10/325 and the xanax xr and the Brintilex. I am very careful to take only what my doctor has prescribed. I still have severe pelvic muscular pain in my abdomen, and I'm continuing to heal there. Of course the arthritis pain and as goes with the ehlers-danlos syndrome some sublaxtions and dislocaions which have learned to put back myself into place . I am in pain all the time everyday while still on medication I don't expect to ever be completelypain free. However the Medicine I am taking do take the edge off the pain and contain my anxiety panic attacks and keep my depression at bay. I can't understand why my family continues to push me too get off of the medication which I feel allows me to at least walk without a walker and control my psychological issues and brain chemistry. I understand they love me I think they know what's best cut their continual pushing questioning and needless to say lack of comprehension is giving me more anxiety and more pain how do I get it to stop or in others opinion am I taking too much medicine should I discontinue it I need some answers and some help in how to answer them when they confront me with these issues I feel like I'm defending myself daily. They still bring up that as is usual when I started taking these medicines the hours of sleep it take to get used to them and the slurring of the my words when I first went on the medicationd and while the dosages were being adjusted. Now those things are not an issue. I am finally to a point where I am comfortable with my pain knowing it will always be with me to some degree. I am able to get through the day, just able, but the constant attacks are becoming unbearable and throw off the balance I and my doctors have worked so hard to achieve. help