Progressive chronic pain for a year!

[internettie]

This started out last April (2014) with tolerable pain in my neck and back. In November I started having pain in my knees that was so severe that I had difficulty getting up and down from my chair. By December I was having pain in my thumbs, hands, arms, legs, and shoulders. Both thumbs started clicking at the same time. I had to unclench my fingers when I woke up. I would get an odd burning pain in my right heel only when I was lying down for a while. It would wake me up and I would rub my heel on the bed but the only thing that helped and stopped the burning was getting up. The pain went from my left shoulder down my arm into my hand. It happened around the same time on my right side but it happened slower. I have limited range of motion in both arms and they both are weak. I need help opening cans, bottles, packages, etc. Opening the mail hurts now. I get pain in my abdomen and have to hold it to walk without pain. I also have pain sometimes in my throat when I swallow liquid. It is excruciating pain and stops me dead in my tracks. I cannot raise my arms or legs when lying down without help or without pain. Sometimes I need help to get the covers on or off me in bed. Taking a shower is just ridiculous since I can't reach or move my arms without pain. My pain level is 7-10 and has been that way for 6 months. I have seen specialists and had labs and scans and procedures and nothing has shown up yet. Most of the docs do the run of the mill tests though and just keep repeating them. I had my first new lab drawn on Friday - an Anti-Jo-1 antibody test - to test for myopathy/myositis. Still waiting on that result. I will have a barium swallow study on Wednesday to see if there is anything to explain the swallowing pain. Arm EMGs, spine MRIs, brain MRI, labs have all been normal except for B12 being 1,271 after being B12 deficient for years. I have not been able to sleep more than a couple hours with poor sleep quality because of pain for 6 months now. I was diagnosed with Pulmonary Hypertension in September 2014 after being sick for 3 years. Thinking that it might take years again to diagnose this pain/weakness condition depresses and aggravates me. Some docs have said Fibromyalgia while other have said it is definitely not Fibromyalgia. I am going to physical therapy 2x/week but it only helps while the PT is being done but also hurts most of the time while I am there. I see a counselor to deal with these chronic illnesses and to make sure that I'm not somehow causing this or allowing it to happen by not dealing with things. I even saw a psychiatrist to make sure that I'm not somehow manifesting this stuff. He said that he is pretty sure that this is a medical problem and in no way a mental health problem. I went through all this with the pulmonary hypertension and really hate going through it again. I know I will again be vindicated when they figure out what is wrong but the wait is horrible. And what if this does not ever get diagnosed? Once I get the Anti-Jo-1 and barium swallow results back and if they are negative/normal I am going to have to look at major university or the NIH UDP for help. I cannot live like this much longer. The pain is constant and excruciating. I am no longer able to be independent. If I don't get some sleep soon I will lose my mind. If anyone has any suggestions I will gladly take them. If your advice is to reduce stress or eat healthy or to lose weight please don't. Just don't. Been there done that. Thanks in advance for any help.

[internettie]

@Damonllee, thank you for the response. I still have no answers to why I am feeling this pain. Neurology and rheumatology just shake their heads and tell me it's nothing in their area and send me on my way. My hands are really affected now and are in pain 24/7. I am at a loss and do not know where to turn next.

[Damonlee]

I had bad neck, back and face pain for years after I got clean from drugs. I went to so many tests I cannot count them. In the end I was sent to occupational therapy and the message was about acceptance. I was not hearing that and continued to search. I DID NOT GIVE UP. After 17 years of what they eventually diagnosed (wrongly I suspect) as trigeminal neuralgia I found a doctor who was willing to work with me. For me that was key. I ended up getting injections of LIdocaine and something like cotisone every 7-8 months in my occipital notches. It works and has for years and I continue to be pain free. I am not a doctor but 17 years of pain is worth something and my only message is do not give up. You will be vindicated. Do not doubt yourself.