very cold shivering in spinal cord + flu like symptoms

[cool1971]

please i need help if this sounds familiar to anybody i'd like some advice. not sure if lyme is the right topic... I just read some comments that sounded familiar to my symptom... I will mention to my doctor this week perhaps, but i'd like to have some opinions first?

  I used to be a healthy, strong and very energetic mother of two little kids. In the spring of 2007 something changed.

I started to feel extremely cold mainly in my upper body needing out door cloths inside the house and during the night often, felt very tired all day long, felt like I was fainting, but never did, at times felt my legs were so weak that I felt would fall down but never happened, wanted to go to bed during the day often, had funny sensations and pain in my knees that got inflamed under sun hit when in the beach, or walking with a child on my arms, had pain on my lower legs when exercising at the gym -a kind of pain that felt to me like bone pain- to the point that I had to stop exercising altogether as the pain persisted for two days after the exercise, had flu like symptoms non stop -although I did have often minor chest infections, the symptoms persisted in between infections, making me feel I never stopped being ill and blaming the symptoms to the chest infections-  

During the winter after this awful spring - summer all these symptoms remained except for the knees and legs as I did not do a lot of running that seemed to be the wrong exercise for me. The chest infections continued and got really bad, (I have asthma, and this is the main explanation for them as your lungs become more prone to develop them; but nevertheless I had altogether 50 days of antibiotic as never seemed to get over the chest infections and every time I got worst and worst needing intravenous cortisone and antibiotic followed by a long course of 26 days of antibiotic in tablets to finally get over them.

During all this time (we are now in spring 2008, a year after my first symptoms started) I continued to have most of the symptoms mentioned at the top of this document, but I ended up being confused and blamed them all to my chest infections i have had for almost a year.

In this spring 2008 I saw an respiratory specialist that suggested i had a chest CT scan to make sure my lungs were not damaged and i had a CT scan done that was clear and that was good news.
I
still felt so drained and tired although under antibiotics for so long I had become stronger in a way.
Neither of the doctors I saw for my chest infections recognized any of the persistent symptoms I mentioned to them as having any thing to do with specifically with any of the chest infections found and treated.
I tried to take rest whenever I needed and tried to believe i simply had to recover from a bad year.

I got stronger and happier, specially since I managed to go throughout the summer 08 with out catching any chest infection, although I had sore throats often-

But the bad news is that in the middle of the summer with lots of sun and hit I still got extremely cold at times and had to use winter outdoors cloths inside the beach house and for sleeping being unable to warm up for 5 hours to weak up in the morning all hot -finally. The tiredness and fatigue, weaken legs, flu like symptoms, wanting to go to bed during the day, lying down often covered in lots of blankets, etc was still part of my regular 'new life' although it did not happen every day.
It become more obvious to me -now that I did not have the chest infections any more that this symtoms I had for so long blamed to the chest infections had nothing to do with them and that what ever I have is like a latent thing that switchs on and off for periods of days.
I never know when it will start or go, but when is on it stays for days or weeks and i know i am more likely to switch it on if i am weak.

Now autumn 08, the cold sensations have become more acute, like strong shivering feelings inside my spinal cord going from bottom to top of the back of my head, shoulders and upper chest are also affected, and the sudden sensation of lethargy, fatigue and tiredness, combined with flu like symptoms in my head too take over me and all I can think of is to lie in bed with plenty of blankets. it is then as well when I tend to feel as if I am passing out.. a very weird sensation, I feel that if I fall asleep I will never wake up again. My legs are like jelly, I feel my joins, not specially painful I simply notice them. This is a typical crisis that lasts for a few hours after what I remained simply very cold and generally tired, but more awake without so much lethargy though but then for days or weeks I will be having this ‘crisis’ combined with times and days of being better but not normal.
I also have experiment difficulty with comprehension of texts, mental numerical calculation throughout this time.

During the breaks when the major symptoms go away (something that happens randomly and what it seems to me totally by chance) I am a very happy mother and wife, want to do things, and don’t need to have naps, early nights, or wear ski cloths in the house.
I wish it always was like that. i'd love to have another baby, but it'd only be possible if I could get rid of what invades my health most of my days.

Regular test for hypotalamus -gland that regulates body temperature have been done to me several times with negative results.
Most of the general health parameters measured (immune system, glucose, cholesterol…etc) seem to be just perfect.

It has only become clear to me in the last month or two that there is some connection with my spinal cord as I realized when lying on my back -putting pressure on my spinal cord therefore- I start having the inside shivering sensations in the cord and soon after feeling very, very cold, like it did switch on part of the process explained.

During all my chest infections I did have all this symptoms as I have mentioned and for sure felt they got worst when I was weak with fever, congestion, etc, specially when not having antibiotics.
I always felt better during an antibiotic course and I was on my best during my last 26 days course of antibiotic -when towards the end I felt so good- in great part because I was having a bad chest infection and it was being killed, but funny enough the rest of my other symptoms all improved dramatically-

[cool1971]

Thank you for your comment.
No I have never taken any of those.
I know now that I have been seeing my doctor who referred me to a reumatologyst that my ANA  (a test for autoinmune conditions where, 95% of lupus patients have it positive)is positive although is not a very high number, but other test related to autoinmunity are fine at the moment.
However he has discovered I have a Vitamin D deficiency, that usually causes muscle, bone and join pain.
It seems as well that a lot of people with this decficiency feel aswell extreme fatigue.

I am happy to have discover an important deficiency and to try to fix it. I worry that the dr doesn't think there is an explanation for the shivering cold in my spine along with the other symtoms explained avobe.

I also worry that there are a lot of literature on the net linking Vit D deficiency to Lupus. Since my dr has more or less determined that i don't have lupus, although i feel i have many of the symptoms (i am lossing hair, my temperature sensitivity is odd, the fatigue, the flu like symptoms, i even experimented something very peculiar like 'cold water spelled on my legs' that i found through a lupus forum on this site that happens to others with diagnosted lupus... so I am a bit worry, at the same time I should perhaps relax and wait how i react to the vit d + calcium tablets that i am taking for 2 months before seing my dr again.

[summertime615]

do you use opoiods? this sounds like wiyhdrawl to me and anxiety combined.any narcotic can do all these things to you and if you dont use more to stop the symptoms, it can go on for up to three weeks.