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Cendriah Message
10 Oct 2014, 04:21 AM

Does anyone else experience extreme exhaustion?
Ericatom1 Message
10 Oct 2014, 06:45 AM

On a daily basis my friend! I also have RA though which causes a lot of fatigue too.
Eagles05 Message
12 Oct 2014, 03:54 PM

I am always exhausted as well. Have been since a small child. Recently had a sleep study done and found out that I have a mild sleep apnea - central apnea, which I am guessing is due to the CM and syrinx. Haven't decided which course of action to take (CPAP machine, dental devise or nothing...). Good luck to the others that also suffer from exhaustion. Tough to make it through the days sometime. I am very fortunate that I am still able to work and that I have a supportive family - especially my husband - that let me have my 'blah' days when I can't seem to get anything done.
Cendriah Message
26 Oct 2014, 09:24 PM

Ericatom1, At one time I was told that I had adult onset Still's disease. It is a form of rheumatoid arthritis. My CRP numbers got better and they found the syrinx. So they decided that all my RA symptoms may have been caused by syringomyelia. However, I still wonder. That's why I asked my question. Thanks for your response. Oh, I forgot to ask, does your exhaustion go along with a low grade fever? Mine is much worse when I am running a fever. I was trying to figure which causes what. Eagles05, Thank you for responding to my question. I too continue to work. I am afraid that I would give into the pain, and curl up in the bed and take pain meds, if I didn't keep working. Are you able to do anything much after you get off work? Most of the time, I do good to make dinner and collapse. Some days I do good just to make it all day at work without leaving early. I have been running a low grade fever in the late afternoon and evenings. Do you do that and if so, does it make you more exhausted.
Ericatom1 Message
27 Oct 2014, 04:42 AM

I'm not sure, never taken my temperature during those times but I'll start. Unfortunately I definately have RA also. Wish it was just one problem. I Was forced to start chemo for the ra because it's severely active and causing bone erosions and I'm only 28.
Eagles05 Message
28 Oct 2014, 01:51 AM

Cedriah - I haven't noticed low grade fever, but now that you mention it, there are many days where I feel flu like symptoms that only last a few hours. Hmmm... I have been having more pain lately which I think requires more energy to work through, so I am really tired and pretty much useless by the time I get home from work! I need to start taking my B12 and Vitamin D supplements. I ran out a while ago and never replenished them. We will see if that helps. Good luck to you!
Gabrielle Message
3 Nov 2014, 04:29 PM

I only log on once in a while, then go thru all the discussions and chime in. So..I will probably post on most of them. :-) Exhaustion, yes. I get exhausted doing the smallest things. It's ridiculous and so frustrating. Now I have developed sleep apnea, so that doesn't help. Eagles05 mentioned flu symptoms, I have those often. I will tell my husband I think I'm getting sick, but then it stops. I have low vit. D but I was also dx with cancer, so I'm not sure which symptom is which. It just adds to the confusion of treating anything.
Vonmeir Message
4 Nov 2014, 12:05 PM

I'm new here, and yes, debilitating fatigue is a major problem. It got way worse since having spinal cord de tethering surgery 4 months ago. for years before diagnosis, I would be hit with waves of fatigue, that I referred to as "hitting the wall" . The feeling was so overwhelming, that it was visible on my face. If I was with my sister, she would take one look at me and say, "you look like you hit your wall", and she would be right! Since being detethered, the headache and fatigue have been unrelenting. Any suggestions for good reading on SM?
2muchpain Message
5 Nov 2014, 04:03 PM

Hi all.... yes I am always tired and worn out. I'm 54 now and no longer have anything to give. It's very hard just to get out of bed because it takes so much from me. The pain is horrible everyday and hard to deal with. Last MRI said my syrinc was from t2 to t10. It effect every aspect of my life. It even effects my going to the bathroom, breathing, headaches, weakness, and pain throughout my whole body. Take care of yourself, you only get one shot at it because the damage can't be repaired.
Cendriah Message
6 Nov 2014, 01:00 AM

Thanks to everyone for responding. "Hitting the wall" sounded so familiar! My husband always knows about one hour before I do. My sister-in-law, who is a RN, also knows about an hour before I will admit that I can't go on.
Vonmeir Message
6 Nov 2014, 01:20 AM

Feeling like a fever coming on is a familiar feeling for me too. Quite often, I would ask my husband to feel my forehead to see if I was running a temp. Usually not, or he would say I actually felt cold. I was hoping to feel a lot better after my cord detethering surgery, but my low back pain has significantly increased since surgery. I'm quite discouraged at this point. It's been 4 months since surgery, I'm more restricted now than ever. I'm not a happy camper these days.
Cendriah Message
9 Nov 2014, 06:08 PM

Vonmeir, I am so sorry for what you are going through. I do not have a tethered cord. I am not sure how our symptoms might vary. I know what you mean, at times I am running fever and other times, just as you said, I am actually under by a degree or more. Is there anything they can do about your pain?
Vonmeir Message
9 Nov 2014, 11:32 PM

Thank you for your empathy, Cendriah, I dont know if there is anything they can do for the pain. When I talk to my neurosurgeon, he keeps saying that the spinal cord will take up to a year to "settle in" to its new position. Detethering was done to prevent further damage to the spinal cord, which I know I needed. However, the increase in fatigue and pain was a surprise. I'm trying to ride it out. I'm a little worried about all the Advil I've been taking for pain.
Cendriah Message
11 Nov 2014, 03:41 AM

Vonmeir, I know what you mean. I have been on NSAIDS for many years. It never bothered my stomach until recently. However, I am having a lot of problems recently. The doctor has me on vimovo, which is very strong naproxen and stomach medicine combined. I am also having to take tagament now. So far, my kidney tests are normal. I have tried, over the years, not to take the meds, but my C-reactive protein sores to the point that the doctors insist. By that time I am willing to do anything they say because I am in such pain and barely functioning. I have decided that I had rather possibly live a few fewer years, to have good, mostly functioning years. It's not living if you can't get out of the bed or leave home because of pain. Maybe my attitude is off, but that's where I am of now. Also, I have had 15 surgeries and all of the major surgeries do take one year to get over, so I hope after the year has passed, you are much better.
nwauntie Message
26 Feb 2015, 12:27 AM

Cendriah, I have had low grade temperatures for almost 7 months, 99.8-100.8 is average temp. A recent MRI showed a syrinx T 1-2 to T 10-11 and I am in the beginning stages of treatment. I have not had a cervical MRI yet or a brain MRI. My neurosurgeon appointment is in 5 weeks, wants me to do physical therapy while I wait. My syrinx has caused (or something has caused) 13 bulging discs in my thoracic spine and 6 of the bulges are impinging on nerves. I started noticing symptoms about 3-4 yrs ago and have seen many specialist. Ericatom1, this fall 2014 was diagnosed with Rheumatoid Arthritis, so when that diagnosis was given all the specialist kind of ran and were done. I struggle with fatigue, pain, nausea and muscular dysfunction every day. I hate the narcotics and only use them at night, or after attempt to do chores (like mowing the grass). So, I rely on multiple doses of ibuprofen, so I can at least attempt to go to work. Any hints of getting through day to day would be most helpful! Thanks
nwauntie Message
24 May 2015, 06:35 AM

2muchpain... I too have a syrinx T2-T10, no Chiari malfomration. I am wondering what kind of treatment they had for you? I was also recently diagnosed with Rheumatoid Arthritis, also have 15 bulging discs with 6 herniated and touching the spinal cord (from Cervical to Thoracic). I have been pushed around from doctor to doctor, now waiting for a call to the University hospital an hour drive north. Initially the surgeon from my local area was going to do surgery for the herniated thoracic discs but decided against it when imaging showed two more herniations of cervical spine. She did NOT feel that the syrinx was my problem. Can't find much online that has information I need until I see the University physician I guess. I was diagnosed with syrinx first week February 2015...still in pain, still limited energy, numbness/tingling in all extremities. Curious to hear how ypou are doing and what treatment you got, did it work? thanks
Cendriah Message
15 Jan 2016, 02:00 AM

2muchpain, I am sorry to hear of your many spinal problems. I don't have nearly as many as you. So far my treatment has manly been to control involuntary movements and pain. Gabapentin worked very well in high doses. I have been able to get off of it now because the involuntary movements have eased considerably. I recently have tested positive for rheumatoid arthritis. I am still working full-time but am completely exhausted by the end of the day. My syrinx shrunk by half for a while but has increased in size lately. My spine problems are mild compared to yours. Most every disk has mild problems but none need surgery. I can't imagine the pain and exhaustion you must experience.