Chronic Pain

please help!

I've had this weird sleeping disease going on three years now. I've just lost a great job that I've had for 7 years, due to this.

Do any of my symptoms sound familiar??

I'm great and normal (although I have DDD in upper & lower spine) most of the time, then without warning, about once or twice a month, I change into a person with"

1. ABSOLUTELY ZERO energy, I'm talking not enough energy to take a shower or get out of bed.

My pain mgmt dr prescribed provigil (200mg x 2qty a day), but when I'm experiencing my "3-day sleeping disease", it wouldn't help at all. I'm now on Adderall - as much as he is allowed to prescribe for me (30mg x 2qty a day)each a day. I am MUCH more alert on Adderall and think it has even helped with my undiagnosed ADD!). During my "sleeping disease", Adderall may help on day 2 or day 3, maybe to where I could go let the dogs outside to potty, but that's about it. But day 1, most severe day, I'm out like a light still. I still wouldn't have enough energy to get up and do anything.

2. I am incredibly cold - usually, but not all the time, more in my feet. I'm so cold that my upper body is sweating from all of the covers and heating blankets I have on. If I were to take a steaming hot shower, and get out to towel off, I'd be shaking and freezing so bad I'd have to get under the covers again - and this can be in the heat of Texas summer!

I've had a doppler ultrasound on my extremeties and nothing was abnormal.

3. When all of this started, I think right after my ACDF surgery(Anterior Cervical Dysectomy and Fusion), I would lapse into my "sleeping disease" where I can sleep STRAIGHT for three days. Only waking up - like I'm sleep walking almost - to use the bathroom. I don't want to eat or drink during this time. An earthquake wouldn't be able to get me up. I might be aware - but along with the zero energy, I wouldn't be able to move/get up.

I've been to drs during this time, and I can't keep my eyes open, and fall asleep in a chair, on the floor, etc. Dr's told me I have sleep apnea, so I've been sleeping with a CPAP machine. mask, and headgear for a couple of years now. It's made me feel more alert so I'm not dragging everyday, but it hasn't helped with my sleeping disease days)

**It has gotten better over the years, but it always lasts three days. Now, I might not sleep for 3 straight days, but might sleep for 24 hours straight, and then just be a zombie with absolutely no energy. I usually stay in bed, half awake and half asleep.

I've been to three different sleep doctors, a thyroid specialist (endocrynologist), my GP dr many, many, many times (She's the only one that believes me and is interested). I've had accupuncture, seen a chiropractor, have done pain therapy/physical therapy, have had three sleep studies. Everything seems normal except I'm low on vitamin D, and my cortisol level (can't think of the correct term right now) is either way too high or too low.

Because of my symptoms (dehydration, low blood pressure at times, hyperpigmentation on my face, pain in the lower back, chronic worsening fatique, muscle weakness, loss of appetite, low cortisol level) I could have sworn that I had Addison's disease, until I took the second part of the test for Addisons, the CRH Simulation test... then my doctors nurse said it came back normal.

I'm sorry this is so long, but I wanted to give as much info as needed in case anyone can figure this out for me. This has almost ruined my marriage many times, and HAS ruined my great job.

Thanks to anyone reading this!

Oh Jane

I feel so bad for you.

I'm sure you must be frustrated out of your mind.

I suffer & fight with sleep disturbance & extreme fatigue, but not nearly as badly as your suffering.
I have no idea what you should do, other than continue being persistent, going back to your doctor and go until they eliminate enough illnesses & problems and hopefully find out what exactly is going on with you.
I'm really sorry that you lost your good job & have had additional marital strain & stress.

Do you keep a diary? I would keep a very thourogh diary of what your pain & stress, activities, sleep & fatigue are at. Hopefully it may help your doctor see patterns if there are any or maybe help them figure it out.

I hope maybe some others may stop by and see if they have any ideas.

You take Care and please let us know how your doing
Betty

Dear Jane,

I am so sorry that you have to deal with this sleeping issue. It must be hell when you go through it. How often does it happen?

This caught my interest today, as my 22 year old son has a problem becoming awake and aware, even after 8 hours of sleep. He will set his alarm, sleep through it, and the 5-6 times I go in to try and wake him, when he is like this, he yells at me but I know he won't remember it when he is fully up. Like he can not come up from the deep sleep at all until something in his body will trigger him to actually wake up fully, and he doesn't remember anything. I've been starting research on hypersomnia, if there are any sleep studies that are around, I have yet to find one. One thing though, as a mother, I laid down some law last night, and although I know he has a problem, he needs to live life. I had somewhat of a 'do this or this won't happen", type of talk.

I feel somewhat bad because I KNOW it is not his mindset, or desire to do this ever. But guess what? The alarm went off today, and my haw literally dropped open when I heard the shower turn on. He was up and out the door, not happy as he said he had gotten 3 hours sleep, laying awake until the late wee hours. Apparently, what I said to him stayed in his subconscious enough to get him up. (?) Or he just really tried to do what he knows he has to regardless of how tired he is, or how long he slept. No more of this kind of sleeping for an otherwise very healthy young man. He has allergies to everything, and I read that the home may have an effect on our sleep. They indicated that the indoor air we breathe is so much worse than the outdoor air. Change the air filter. Vacuum but then they said the vacuum dust was so toxic. Basically I picked and chose what might be an issue for him.

My heart goes out to you, have you ever been tested for Raynaud's Phenomenon? Your cold feet reminded me of that, I get those freezing cold hands that will not get warm again, I literally I have to de-thaw them in running warm water for a long time. But your whole body is cold!

I think any doctor would be very happy to take your case, as you said was it your GP or OB that really cared about all this? Can your docs talk to each other? Oh how I wish this world was just not so hard for everyone. I have a very clean house full of bugs that will not go away, springtails, and have had a skin infection since they arrived. Only my best friend agree that it is the bugs on my skin that seem to burrow in then take control, rendering me the lady with 50 band aids. When I'd rather not be living here, I have to for now, and I will do my best do deal with this, but over 2 years of this, SEEING those damn bugs in my bathtub, (I use my son's shower right now), and see them as I watch TV at night, as they are nocturnal, and do their most movement at night.

Now how did I get on that?? This is from a very very tired mind, lots of computer work, lots of reading for my classes gal.

Gentle Hugs,

Shauna

I too have chronic fatigue syndrome in addition to my ongoing back pain. This was just diagnosed this past July. My numbers on the blood work for Epstien Barr, which can cause CFS, was off the charts! There are 3 numbers for the blood work to confirm Epstein Barr. I don't know what they refer to, but anything over 120 indicates that you are positive for CFS. My numbers were 200+, 400+, and 1580!!! My doctor told me to take 1, 25mg tablet of time-released DHEA. This has been a God-Send!!! However, my symtoms have become increasely worse and I now take 2 tabs in the morning, 2 tabs, at noon, 2 tabs, in the evening. DHEA stimulates the adrenal gland. Without it, I would not be able to function at all. I still feel like you describe by evening though. I have been trying to get in with an Infectious Disease Specialist for the last 3 weeks but yet to get an appointment! I am very frustrated because my symptoms seem to be getting worse each week.

Please check out using DHEA though. You can buy it at GNC and it is very inexpensive. Just be sure to buy the extended-release form and as always check with your doctor first.

You also need to find out the cause of your CFS. At least ask for the blood work for Epstein Barr. Typically, it causes mono, which I did not have. I had swollen lymph nodes in my lower armpits that were discovered in a mamogram. This is a VERY common virus that is only transmitted through saliva. My husband though says he not going to be married to a wife and not be able to kiss her! I have obviously given it to him but he shows no symptoms and it's been 4 months since this has "reactivated".

I am possibly going to have another back surgery, which will include the removal of my spinal fusion hardware, and I am very concerned about having a surgery while I am so infected by this. I am just praying that I see the Infectious Disease specialist soon and get this taken care off.

I will keep you and the others posted here in my thoughts and prayers. This is the weakest feeling in the world. At times, it's an effort to even breathe when I lay down. I even fell asleep with my head on my desk at work this week. I would be unable to move and would be in bed all of the time without the DHEA...just worried that I am taking too much but at this point, I don't know what else to do until I see the specialist.

Take care and keep us all posted!
SoBlest

Hi gee your problems sound like they really suck bigtime. I hope your doc appts and surgury goes well. Best of luck! Sophia