No matter what anyone else says, you must believe you will get better. When you have MFS it can screw with a lot of your mental, emotional, and neurological functions (depression can be a symptom). I had a very debilitating form of viral labrinthitus that they believe caused my MFS and caused my brain stem to swell as if I had bickerstaff encephalitis. I was told when I first got sick to "buck up and get over it" by both friends and family.
Most didn't even believe that I was really sick until the tremors started to kick in. You have to keep strong knowing that you WILL get better. I nearly committed suicide because of how sick and ill I constantly felt. I would wake up thinking "this will never stop, it wont get better, and no one believes me so what's the point of getting up".
I was diagnosed with a "mild" case of MFS in October 2013. By the time they diagnosed me, I was already over the absolute worst of the symptoms but many were still very prevalent (severe pain to the skin, visible ataxia, tremors, weakness and loss of control of muscular and tendon reflexes). I was told that I was luck as MFS can affect the respiratory and pulmonary systems and it could have been hospitalization or even death.
When I first had the Viral Labrinthitus, they couldn't even diagnose it until almost 4 months later when I took a balance test and found that my left eye was not tracking as well. I went to a local clinic 2 times for abdominal pain, constant vomiting, a slight fever, severe dizzyness and vertigo, and dehydration. They gave me a saline drip and took blood tests and said I was depressed and stressed after dealing with this constantly for 10 days (I wonder why?). They game me paxil and lorazapram without considering how I would react to it. 3 days and I was ready to crawl walls and peel my skin off. It was disgusting. I immediately called them and told them to take me off. They said "Let us talk to the dr. about this. We'll get back to you..." It took them till the next day to tell me it's okay to not take them.
The damage I received was in the semi-circular canals in the inner ear on both sides (which is located right next to the brain stem and most of the other nerves that control you body).
I called my ex whom I was really close with (but hadn't been on the same track for settling down) and told him that I needed help, I needed company, and that I needed to be watched but I didn't want to go to the hospital because they would put me on anti-depressants which I couldn't have. He spent every weekend with me from then on and any other days he could spare. He drop over an hour each time to see me and checkup on me even if it was for only a couple hours. He went to doctor appointments with me because my brain was so fuzzy and couldn't recall exact dates. I was still stubborn enough to sign up for college courses so he helped me with homework.
I ended up getting the tremors and neuropathy not to long after school started in the fall which were the key symptoms I needed to have me diagnosed but my apt was 1 month from then. They tried to put me on effexor (prior to diagnosis), which, looking it up later, was a big mistake on their part. It has in the side effects section (might cause GBS). It made me feel like my brain stem was being pulled out of my head on top of everything else that was going on. It has given me residual migraines that occur at random.
Through all of this, I lost 2 jobs, was suspended from school, was losing my friends, was losing the place that I lived, almost lost my car, and yet, today I found enough hope to get a great job that works with me that pays me a living wage, a life partner whom I live with now, and a determination to finish my degree (and OMG I can almost walk like normal). I still deal with residual numbness and weakness, temors, and pain...and the new migraines thanks to effexor. I even have a form of dyshidrotic eczema thanks to MFS. No matter how bad it seems, don't ever give up, don't regret your decisions, and find someone or something to live for, to distract you and potentially love you back. Also, stay away from Dr. Google. Dr. Google is no better than WebMD. It all leads to cancer and death. (all of the above sounds really cliche but do keep it in mind)
My advise would be to go for a 20 minute walk 1-2 times a week. Get fresh air. Only go a couple blocks at a time. Let your body heal, and then work it but not to the point of pain (it just defeats the purpose of your body recouping and makes you not enjoy the walks anymore). My first walk I went 2 blocks and I almost couldn't get back to the house, but I did it. I made it my goal to do the 2 blocks and back without issue. After a month and a half, that wasn't so much of an issue anymore. I can now hike up 3 flights of stairs, several times a day, no problem. Don't use the elevator, don't use the easy way unless you absolutely need to. Your body is a lot stronger than it seems when you are in pain, you just have to believe in yourself. Also, on a side note ***having sex raises pain tolerance just a bit and is still enjoyable, builds stamina, can be a legitimate workout, and is over all healthy for your body regardless the stigma our society has about it. It is something to consider and it isn't usually on the top of a sick and stressed persons mind. I found that it does help but to each their own.