This is probably a hot subject,but when I searched,it looked like the discussions were old. Does anyone get disability for their TN? I'm pretty sure if I don't stop leaving work early to go home and go to bed, I'm going to lose my job. I'm also taking time off for doctor visits.
Also, what is the best material to present to your family so they understand?
I wrote a reply and lost it. I'll try again
I was wondering about disability also. Don't know how I can get myself to work every day with this pain that is affecting some of my job performance. I have no problem with the physical work but when it requires me to speak that's another story . I'm newly diagnosed with this so I have a lot to learn . Hope we get some answers here . I was happy to find this group.
As far as family ....mysignificant other is beginning to not speak to me because he's afraid he'll cause me pain .
I have finally been told that my doctor will back up a disability claim on my behalf, of course, that doesn't mean I will get it. TN is only one of the problems I am dealing with; I also have connective tissue disease, severe migraines and sleep hypoxemia. Of course, you can throw depression into the mix after all of what I have been through. I have had TN for over 30 years or so. Of course, it didn't start out like it is now. The chronic pain did affect my work although I just pushed through. But I also had problems with falling asleep at my desk as well as while I was driving. That creates a risk for everyone! I am now on 15 different prescriptions a day, as well as other medications that are PRN. I am exhausted in spite of the fact that one of the meds I take is meant to keep me alert and awake.
The worst part is that I love work! But I seem to be getting worse and worse each day. The connective tissue disease is impacting my joints so much that it hurts to move my entire body although I know that the more I do, the better I will feel. My knees and my hands are so stiff when I get up in the morning that I can barely walk or hold my coffee cup. And I have started walking with a limp. I have to be careful every time I eat and never know if eating will set off my TN! I wrap my face up every time I walk out the door out of fear of the cold and the wind. I almost always sleep with a heating pad wrapped around my face. I am only 52 years old.
The only person that seems to understand at all is my one daughter because she unfortunately has MS.
I will be interested to see what others answer on your question. I will be filing for disability myself. It's not so much that I want to but that I feel that I don't have any other options.
Good Luck
Hello
Great question, after my MVD surgery the doctor had no problem giving me months off work. Now that I am not under his direct care it is a bit difficulty. I have a HMO in Cali so I have had to almost beg for it. I have an attorney on stand by if I want to pursue permanent disability which would be a challenge. What is going on? Your doctor can take you off work and if you have a union job they are friendly to FMLA leave
As for materials we have a resource link with names of some great books...I hope you get better
~E
As always, thanks so much for the replies. I'm just tired is all. I too find myself nodding off at work. I won't know exactly what the problem is until I get the MRI. I was diagnosed with TN many years ago but all the doctors just seemed to say, " you have TN, here are drugs, see you in 6 months". Now,I'm full blown and am very disappointed that I can't deal with it like I have for 6 years alone just pushing through. On top of it, I am a chronic kidney stone producer and currently have 8 kidney stones. Has anyone ever been told they have adrenal exhaustion? I think my body is just tired of the pain now.
Hi Peony, pain is the real enemy and the fact your working with it makes you pretty courageous. I get lots of back pain with the TN and I got told pain was the number 1 enemy because of the effect it has. Maybe approach it from the pain management rather than cure perspective from the moment and just get some relief.. Is there a pain management clinic you can get into? If you can get the pain managed, you might get some better rest and then you can deal with the rest of it more easily.
Peony - One of my favorite flowers! Keep in mind, pain in and of itself is exhausting! People that don't deal with chronic pain don't understand that at all. Your body is constantly "fighting" against it, which will wear you out! I certainly agree with Smiley, if you can find a pain management clinic, see if they can help you get some relief. I go to one and get a procedure to burn the nerves in the side of my neck. It sounds terrible, but it isn't. While that is not for the TN, it relieves other sources of pain and at this point, anything is better than nothing. Unfortunately the last one didn't work as well and I will need to follow up for some trigger point injections.
When you say you are JUST TIRED, trust me, I THINK WE ALL FEEL THAT WAY. You are not JUST TIRED, your body is fighting for relief! It's more than JUST TIRED, it's past JUST TIRED!
I don't know anything about adrenal exhaustion but ask questions until you are satisfied with the answers you are given. Always remember, THE DOCTOR WORKS FOR YOU!
It also looks like this site has posted an article about Chronic Fatigue today, which I haven't had a chance to read. Check into what it has to say. Be your own advocate, research things, just make sure you are on reputable sites.
And remember, this is an awesome site!
Cathy
Hi Peony,
We all understand your pain and his debilitating it is.
I was recently discharged from hospital as they thought I had a stroke but they seems to blame it on my comlex migraine which I don’t believe I have as I experience severe eye ball pain to the point I can’t open my eyes and all I want t do is sleep. I can’t talk or function like this and also find aircon is a trigger. I am trying to negotiate a work from home plan with my employer as I too can’t work due to the pain and I have noticed my quality of work is failing.
I was requested to have a MRI which would be my 4th one and explained this to the staff there and said this test will only show my TMJ dysfunction and nothing else. I also told them I am waiting to see my specialist so I can get a angiogram test done which is a dye they insert into your blood vessels and take a CT scan which hopefully will be able to find the trigeminal nerve compressing the blood vessel (artery).
Anyways the staff overruled the MRI & did a MRA which assesses the blood vessels and will be getting my test results next week. Here is some info about it - http://www.m.webmd.com/heart-disease/magnetic-resonance-angiogram-mra
If your MRI fails to show your issue please see if you can get an angiogram or MRA.
Good luck & I wish you all the best.