Feel Like I'm Dying

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applevenus
Veteran Member


Date Joined Aug 2011
Total Posts : 934
   Posted 5/15/2012 10:25 AM (GMT -6)   
PS Men DO get Fibromyalgia. I think men make up about 20-25% of FMS cases.
46F, Fibromyalgia, Vitamin D deficiency, Sleep Apnea/CPAP therapy, allergies/multiple chemical sensitivities, possible Chronic Fatigue & occasional IBS symptoms.

I take vitamins, Tramadol for pain, Flexeril as needed.

Moongirl
Regular Member


Date Joined Mar 2012
Total Posts : 21
   Posted 5/17/2012 7:16 PM (GMT -6)   
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

HoldingOutHope
Regular Member


Date Joined Jun 2012
Total Posts : 44
   Posted 6/1/2012 2:19 PM (GMT -6)   
I have the same symptoms. I've had a million dollar work-up and all tests negative. I was diagnosed with CFS a few weeks ago after being sick for a year.

Moongirl
Regular Member


Date Joined Mar 2012
Total Posts : 21
   Posted 6/1/2012 2:52 PM (GMT -6)   
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.

needsomehelp22
Regular Member


Date Joined Jan 2012
Total Posts : 23
   Posted 6/14/2012 2:42 AM (GMT -6)   
RollsRoyce said...
P.S. I contracted Lyme 45 years ago but was only diagnosed two years ago. Told docs for 45 years that I had Lyme, but NOOOOOO! "No, you don't test positive," blah blah blah.

Finally found the doc who knows a thing or two!

Regina


Just curious, what did he know? What made him the special doctor that could detect it? Do you have any knowledge of how to be "correctly" tested?

Michelleanswer
New Member


Date Joined Jun 2012
Total Posts : 1
   Posted 6/16/2012 1:42 PM (GMT -6)   
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)


lyndz
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/6/2012 2:56 AM (GMT -6)   
I Cannot believe what i am reading. I thought i was the only person who had these symptoms. Its incredible. I have thought over the years that it must be some kind of auto immune thing. My problems started after i had my son and i picked up an infection in the hospital and ended up with boils.
I have never ever been the same. Doctors simply dont listen to you. they dont care. It is so frustrating.
I am so bloody exhausted. I feel like i just need a rest. I keep hoping that i will start to feel normal again but it never happens. I feel like i am constantly on the verge of getting the flue. My throat hurts, my eyes are red and sore. My brain simply does not function. All i want to do is sleep.
I dont know how to fix this. All i want is to have some bloody energy. I feel as if i am dying, as if i have some horrible cancer or disease that is slowly sucking the life out of me. I feel as if i am dissappearing.
I wish there was an answer

viccatt2
New Member


Date Joined Jul 2012
Total Posts : 2
   Posted 7/6/2012 10:00 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. cry confused smhair
 
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!!!!!

viccatt2
New Member


Date Joined Jul 2012
Total Posts : 2
   Posted 7/6/2012 11:26 PM (GMT -6)   
 This is the post that I can relate to the symptoms very well. I hope I put my post in the right place??? I'm so confused ??? How can I be so sick from Fibro and Chronic Fatigue?? It makes no sense, what more it to this??? I found  this sight when I googled I feel like I'm dying/fibro/cfs... I hope to go from this cry  to yeah  but at this point feel I'll will keep getting worse, with NO real answers. I guess it will take a famous movie star to have these dx's or symptoms before anything is really done to give us answers. I'm a recluse and hate that I can't go to a movie but 1-2x/yr on a whim, if I energy on those rare unexpected great days. I pray to have the strength to just do a load of laundry this weekend and I will be sooooo happy and grateful... I hate being a whiner, I know many have way more serious things then this. BTW, I read an article that people who took Cipro have many  of these issues. I was on Cipro to prevent bladder infections on and off for about 15 years. Has anyone else heard about this??

mercyinhim
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/23/2012 6:28 AM (GMT -6)   
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,

devmar12
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/26/2012 9:22 PM (GMT -6)   
How do you guys get doctors to give you things like vit. B shots? What type of doctor will do this, especially if your B is above 200 but not much? I live in South Dakota and there isn't a single naturopath in the state I can find...

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 8/1/2012 1:17 PM (GMT -6)   
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 :-)
Fibromyalgia, Chronic Fatigue Syndrome, Brain Tumor 2nd, crainiotomy 2002, radiation 2007, mild scoliosis, carpal tunnel, surgical menopause, 44yrs old and on disability since 2009.

drowningwaves
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/4/2012 12:13 PM (GMT -6)   
hello,
have been reading the forum and am realizing that im not alone in suffering. I have been sick for several months. I came down with what i thought was a flu bug and was sick for about a week. after being sick for several days I went to the emergency room and they did a monospot test. It came back positive. I was told to get plenty of rest and follow up with my GP. I have never recovered from the illness. After 2 months of feeling ill my GP did a titer test to see if the virus was still active. It was. Since then i have been dealing with a number of symptoms that don't show any signs of going away.

sore lymph nodes in my neck and armpits
extreme exhaustion
brain fog
insomnia trouble falling asleep trouble staying alseep
malaise
sore throat that comes and goes
sore or achey joints
muscle aches
very bad headaches
feeling of lump or obstruction in my throat

This has been very hard for me and is affecting my professional and personal life.
I have been on supplements and have tried many home remedies to no avail.
Wish and hope for us all to get better.

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 8/4/2012 3:22 PM (GMT -6)   
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!
Fibromyalgia, Chronic Fatigue Syndrome, Brain Tumor 2nd, crainiotomy 2002, radiation 2007, mild scoliosis, carpal tunnel, surgical menopause, 44yrs old and on disability since 2009.

ativan45
Regular Member


Date Joined Jun 2011
Total Posts : 162
   Posted 8/16/2012 5:45 PM (GMT -6)   
all of you are wrong I know whats going on. you dont have a disease dude.

ativan45
Regular Member


Date Joined Jun 2011
Total Posts : 162
   Posted 8/16/2012 7:23 PM (GMT -6)   
how many of you take ppis. if you dont know what a ppi is its prilosec, nexium, etc. for acid reflux.

sydneyriver
New Member


Date Joined Aug 2012
Total Posts : 2
   Posted 8/30/2012 5:25 PM (GMT -6)   
Ativan45, please share what you know about ppi's and these symptoms. As someone who has been taking ppi's for years and who is experiencing many of the symptoms discussed in this thread I'm very curious to hear.

roswpell
New Member


Date Joined Aug 2012
Total Posts : 2
   Posted 8/31/2012 7:09 AM (GMT -6)   
You might be Vitamin D deficient. Request a blood test for Vitamin D, Calcium, Magnesium and Potassium.

Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 465
   Posted 8/31/2012 10:26 AM (GMT -6)   
Gosh Marrit--Your symptoms mirror mine..especially the "breathing"..thing-!
 
It's like my..."automatic pilot"...for breathing in...goes.."OFF"--!
 
Amazing--Rob

sydneyriver
New Member


Date Joined Aug 2012
Total Posts : 2
   Posted 9/2/2012 6:45 PM (GMT -6)   
Rob,
Do you have any numbness in your fingertips or toes?

mare50
New Member


Date Joined Sep 2012
Total Posts : 11
   Posted 9/5/2012 4:08 PM (GMT -6)   
To Drowning Waves, these are all symptoms of Chronic Fatigue. I know, I've had them on and off since 1986. In 2010 I found a rheumatologist who diagnosed me with Fibromyalgia. Told her about all my CFS symptoms and she said if you have one you have the other.

Plurgurl
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 9/25/2012 8:09 PM (GMT -6)   
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.

rll
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/27/2012 7:15 PM (GMT -6)   
I was diagnosed with CFS about 20 yrs ago.. I remember it seemed i could hardly function.. but i don't really remember exactly all my symptoms i had back then..but it went into remission about 6 months after being diagnosed. I also was diagnosed with Hoshimottos. auto immune/ low thyroid about 6 yrs ago. it is hard to control cause it goes up and down its all over the place. I am a very high strung, high anxiety, i get all worked up and get totally stressed out. I had e a mild heart attack back in july of this yr. and i had 90% blockage, and stent placed. Well after having something as tramatic as this, it sent me spiraling down into depression, horrible anxiety, and since then I have felt horrible.. I am exhausted, and weak, and fatigued all the time. along with that, I have body and joint aches and pain, trouble sleeping, shortness of breath, yawning, chills, fells like i am off balance, I get winded and hardly can climb the stairs. can't think clearly, brain fog,headaches, bad taste in my mouth, nauseous , when i try to do laundry or house work. when i bend over my upper back kills me.. my arms and legs feel so weak. its hard to fix my hair because my arms feel so heavy and weak when i hold them up even for a short period of time.. Since my Heart attack i have been to the ER 3 times. all my test come back great.. I have had a nuclear stress test since my HA and they say my heart looks good. I am at my wits end.. It seems like i go from one Dr. to another. I just want to find out what this is??? This is driving me CRazY!! I don't feel or act my cheery self, my family and friends notice it. the things i once liked to do, i feel like i have no desire to do them anymore.. I want my old self back...    Any feedback much appreciated.. rll confused

Post Edited (rll) : 9/27/2012 7:20:57 PM (GMT-6)


Andy92
New Member


Date Joined Oct 2012
Total Posts : 1
   Posted 10/29/2012 2:21 AM (GMT -6)   
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.

ECG123
New Member


Date Joined Nov 2012
Total Posts : 2
   Posted 11/13/2012 9:30 AM (GMT -6)   
Hey, I've just signed up so I can post here.
I was literally amazed at the similarity of our symptoms.
The difference is - I'm 18 and have had them for four months.
I had my whole life ahead of me and was just about to move to London to Persue my music, when this happened.

My symptoms are:
- bowling ball head (so heavy)
- racing mind (brain) but tired fatigued body which results in insomnia
- muscle twitching
- whenever I get remotely excited intellectually, my chest and arms shake furiously
- bouts of nausea
- bruxism (clenching my teeth)
- tight throat and neck
- sore/full sinuses and ears
- spaced out feeling like im on speed
- light, sound and touch intolerance that varies and can be "almost normal" to "very debilitating".
- ibs sometimes
- dark pigmentation on my skin (foot and stomach) but not face and not too severe as of yet.
- eptopic (extra) heart beat and palpitations

I've had a clear ct scan, clear chest x ray,
Normal thyroid twice, normal full blood count, no Epstein Barr etc... So what is it?!


Ive never been ill in all my kife before this and was a fitness fanatic as well as an aspiring philosopher and musician. No doubt the stress of a level exams knocked me sideways a bit as I desperately wanted good enough grades for Cambridge but could that really of lead to this?!

Of course i'm anxious as a by-product of the above and I feel desperate. If anyone can shed any light on what's happening to me, I'd be so grateful. I need to sort it out so I can enjoy life again and Persue my dreams rather than watch them crumble. Thanks x
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