Feel Like I'm Dying

I have had many similar symptoms and tests. Ultimately, my issue was severe B12 and vitamin D deficiencies due to prolonged use of PPIs for GERD (acid blockers for acid reflux). I also went gluten free just to be safe. I am on B12 shots, sublingual methycobalamin (b12), liquid vitamin D, magnesium and off all prescription medications. I have lost 30 pounds, my joint pain is gone, fatigue is greatly reduced, bone pain gone, IBS that I had 15 out of 30 days for 3 months straight is GONE. My GERD is better OFF the PPI than it was ON the PPI. Read the book, "Could it Be B12?" which you can find on amazon. Then get tested for B12 and D before supplementation. And ask for the number- don't let them just say "It's normal." My B12 was 220. Normal in the US is 200-900 and the fact is, with B12 shots, my symptoms are almost completely gone (it takes time to build both these vitamins back up in your system.) Too many people are suffering needlessly for years because doctors don't pay attention to nutrition! I am also reading "Your Inside Tract" by Gerard Mullin I think it is- he is a GI doc who was misdiagnosed and almost died, and healed himself through nutrition. I feel better than I have felt in years and years and while I am pretty angry at how I just swallowed these PPIs because my doctor said to and now I find out that you can have reflux symptoms if you don't have enough stomach acid, or simply because of a LES (lower esophageal sphincter) issue - ugh. But I am taking back my health and I am doing so well. I hope you all get tested. Read the book. It's really eye opening.

Moon

Find out what your levels were. Don't just let a doc tell you they are "normal." My B12 was in the low end of normal and yet treating it took care of my symptoms.

Hello jr991,

I noticed this post whilst doing a google search and felt I had to register to tell you that more then likely you have an autoimmune disease known as celiac caused by a reaction to the component of wheat, barley, and rye. It sounds very much like Gluten ataxia.

Have you tried following a completely gluten free diet? Many of the symptoms that you list such as poor concentration, brain fog (heavy head), muscle spasms, excessive fatigue are symptoms of coaliac... I also had these symptoms that went away completely after following a completely gluten free diet.

See http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html
and

http://www.coeliac.org.uk/coeliac-disease/what-is-coeliac-disease

and here is a good support forum

http://www.celiac.com/gluten-free/forum/49-celiaccom-celiac-disease-gluten-free-diet-forum/

Post Edited (Michelleanswer) : 6/16/2012 1:45:23 PM (GMT-6)

I just joined this after reading the post.  First off, I apologize if I make no sense with my typing or writing,for I feel ,sickly, foggy and confused. I can't remember anything. I have a dx of Fibro and CFS, for about 13 years. I'm getting worse and worse. I can't shower or get the mail without a plan. I'm all alone living this secret. I have most of the symptoms as in the original post but I also have interstitial cystitis, so my bladder has bouts of ". I can't think anymore!!!! I'm crying alone in my apt and hate what I have become. I'm so chilled, then hot. I know I have a fever but don't have a thermometer. My pain management  md treats my symptoms with meds and  more meds, started by my MD I had prior to moving. I hate these pills. Strong pain meds, pills for energy, anxiety, sleep. He even wanted to give me a prescribed Rohypnol sleep med and I refused. I have refused many meds, I am on meds for a cancer pt and feel like I have Aids but I don't. I had many tests years ago when this first happened. Everything was negative, then they brought up the C word. Finally I had a titer for Epstein Barr and it was through the roof and that's how this dx started.  My immune system is so weak. If I catch a cold , I can be stuck in bed for a month.  I'M LOSING MY QUALITY OF LIFE  and feeling hopeless!!!!I'm in my early 40's yet look much younger, for I never see the sun. I guess that's the only good thing I have, secondary to whatever this is???? I can't take care of myself!!!!! I can't do the laundry, I used to be into clothes, make-up and girly things and if offered 10 grand to go on a shopping spree but had to go now, I'd say no!!!!

People don't understand because when I go out in public I wear make-up and don't look as sick as I feel. Something is really wrong right now, I don't drink enough, or eat enough and take these stupid pills. I'm sure these meds add to  these issues for they have side effects.

The one's that are physically addicting suck because I forget to take them and only reminded to by  starting to have withdrawal symptoms.

I hate going to the pharmacy and MD 1x/month, I hate the stigmas. I am treated well by my pharmacy, I have gone there for 8 years. One pharmacy and one MD, so they know I don't doctor shop or do things people do that make it hard for people who really have pain, not to be judged.

Everyone has died like my husband and father, I have a mother who is a borderline and hates me, I gave her all my $ before and now like the giving tree, just a stump with nothing left to give her.

I have no siblings, didn't get to have kids for my husband died. I have 2 cats and treat them as my babies. It takes all I have to care for them!!! They come first because they are helpless. They sit outside the shower when I'm in it and one even jumps on the top to see if I'm ok. I make then depressed when I cry. I feel guilty. If it weren't for Pet-co online, I'd be worse off.

I have had this Lyme disease thing in my head lately because I was never tested before. I'm scared to know!!!

The pills w/o proper fluid, I'm sure are killing my organs. Yet my stool and urine are normal in color because I check, no pitting edema or signs of liver or kidney failure[so far].

I feel as if I'm 90. I hate myself for taking these meds but I have too and when feel better, I decrease. When stress is worse my upper spine feels like there is a fire in my back and I fantasize about cutting my spine out. I know it sounds disturbing but I need to be honest. It makes me feel good to imagine this red, inflamed fire being taken out of my back. The burning is so bad. It's only my upper back ? I lie on the floor and rub my back all over  and on the wall too. I'm never comfortable!!! The tens unit helps, I pit it on full blast and wear it longer then the directions.

No one knows I take meds because I don't slur , have small pupils or act high.  The meds win blocking the pain at the receptor site. People would be shocked if they knew what I took, take or what can be given. I truly hate myself because of this. I'd give anything to give all my meds away to one but they'd have to take my pain and all symptoms long with it. Right now I have weird pain in my butt area that goes lower into my thighs. I hurt everywhere.

I feel like I want to call 911 because I'm sooo weak, I live on Ensure  most of the time, I can't get to the market or can't hold real food down. I'm ashamed to ask for help. I have lost some friends because I never can keep plans. People take it personally and don't believe me , because they don't get how I can be sick so much!!!

I have learned I can't make any plans ever. I may feel good, which to me is  what a normal person feels like with a average cold. Right now I am in outer space and feel retarded as I write.

What do I do, I AM SO SCARED and have 0 family!!! I need someone to wash my things. Thank-god, I have so many  sleep clothes that I can wear. I can't perform my adl's and need assistance for my iadl's.

I've lost my desire to dress up and I loved too but have no energy. I used to use many skin products 2x/day and now have gone 2 days w/o washing my face. It's that bad , that I have no energy to even to that at times!!!

I feel so worthless and gross!!!!!

I'm scared I wrote this , I'm just scared!!!!!

I developped Fibromialgya, Chronic Fatigue Syndrome and Chemical Sensitivity due to malpractice with anesthesia. That was the diagnose of my neurologist and other doctors. I am struggling with tinnitus, paresthesias, terrible pain, pins and needles, crapmsp... Some time ago I was in bad without being able to move from my bed. Fortunatelly I met a doctor in Solana Beach, Dr Raymond Woo who has treated Fibromialgya and chronic Fatigue with success. I was able to walk again but unfortunatelly I don't live in California and I couldn't complete the treatment, but I hope I will be able to come back and finish it and recover my health. He treats with acupuncture and although at the beginning I didn't believe in this kind of treatment is the only one who has worked for me and for other patients with fibromialgya and Chronic Fatigue.

I wonder if any of you has developped fibromialgya, Chronic Fatigue or Chemical sensitivity after surgery. Could you please contact me? I

Thank you,

Wow, I have never felt so not alone and yet so sad to be in good company at the same time. I feel for all of you, South Dakota you will need to travel to find a good doc. naturopathy you can find alot on the net but be wary and check with someone you trust before you buy. Hope to type at you again soon

Make sure your GP send you to an endocrinologist to get your thyroid tested. Apparently thyroid disease is pretty common with CFS. And go even if your thyroid test ok, the test your GP does isn't enough. Good Luck!

how many of you take ppis. if you dont know what a ppi is its prilosec, nexium, etc. for acid reflux.

You might be Vitamin D deficient. Request a blood test for Vitamin D, Calcium, Magnesium and Potassium.

Rob,
Do you have any numbness in your fingertips or toes?

I am gonna definitely agree with many of the others and lean strongly towards LYME! Regardless of tests your symptoms scream lyme and I say this because I've been living with it for many many years now. It still amazes me how Lyme disease has become an epidemic and still so many people live in misery due to the lack of Lyme literate doctors available. My mother has lyme and after years of antibiotic treatment under the care of a wonderful doctor she is slowly seeing results. Fibromyalgia is not a fun thing to live with either and I feel for you. I hope you get treated for your symptoms at least so you won't have to go through each day suffering.

Hello JR991 (The original poster),

If your still around here, do you know what you've been diagnosed? I have the EXACT same symptoms, every SINGLE symptom that you have I have experienced and know exactly what your on about. The thing about the head and neck pain, the floaters, the heavy feeling of limbs, the photophobia, twitching, aftereffect - Absolutely EVERYTHING you have described I have. I have also seen numerous doctors and have had nearly all the blood test done on me as well as a CT Scan and everything came out as negative. It just makes me feel so crazy that no one else feels the same way as I do and when I try to tell them what I'm going through, they just think i'm crazy.

I recently just saw a doctor again and he suggested me going to psychologist. The thing is I KNOW, for sure since it's my OWN body that it's not my mental status that is affecting me. I am a very happy person, lots of friends. I go out have fun, study, work out, spend time with family, play games - I am your typical person. And I'm not in denial that I might have a mental illness - it's just that I am so happy go lucky that I feel having a mental illness is the last thing I'll think I have.

Reading through this post, has made me feel a little more normal. I've been a lot through these past 2 years. I have been going on a rollercoaster with all these episodic symptoms, been trying to find answers that never seem to appear. I've tried my hardest to wake up in the morning, go to university, come home, and juggle university with work. I've tried really hard, making everything go right but yet my health just seems to keep rolling downhill. I really really wish I can find some answers and can treated if not cured. I'm just so sick of this - it's making me absolutely mad.

Please - give me some advice, I really need to know some answers.