Delayed-reaction flare and a strange, new symptom!

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jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 9/30/2008 4:59 PM (GMT -7)   
Hi everyone! I posted in another thread here about how I am in a major flare right now. It seems that the stressful period of time from Hurricane Ike coupled with the fact that I was taken off of the glutathione/atp injections last month has triggered what I can only term as a delayed-reaction flare. Through 12 days of displacement from home because of no power or water, it was kinda' trying and stressful at times but I really wasn't feeling any significant increase in pain, fatigue or discomfort. Then, all of a sudden, the very next day after being home with power and water and no significant damage to our home, I felt like I was hit by an 18-wheeler and it has stayed the same or slightly worsened ever since. I think the adrenaline from the stress created a kind of blocking mechanism to most of the fibro/cfs/cebv stuff and once that level subsided all hell broke loose, literally! (LOL) There are many that have suffered and are still suffering much, much more and far worse than I and I thank God for my fortunes but stress seems to reside on many levels and in many places and I think it finally caught up with me. I only had to suffer a minor "inconvenience"......my in-laws who are currently staying with us until Galveston gets water and power back so they can go home and seriously start their massive cleanup have lost everything below the second level (or living level) of their houses. For the most part, the second levels which are built on pilings survived miraculously well except for those near the beach.
 
The main reason for telling y'all this is that I feel such a strong guilt complaining about my little aches and pains when compared to all those who suffer much worse, not only in Galveston but around the world. I have it so much better than so many yet I can't help venting and complaining of MY discomfort. Thank all of you so much for letting me get this off my chest. It been an extra weight that I don't like carrying around!
 
Now, about that strange new symptom. It's not really that new.....I've been experiencing it off and on now for several weeks but it is very unusual and concerning me. I keep smelling a very strong, sickly-sweet smell that is sometimes overwhelming and makes me feel physically ill. Nobody else smells it......only I and I'm just not sure what to make of it. It smells of acetone......that's the only fragrance I can compare it to. I see the rheumy in October and I will most definitely mention it but in the meantime, I don't remember seeing anything at all in the listed symptoms related to fibro, cfs and cebv mentioning anything about sickly-sweet or overpowering aromas. If any of you can shed even a glimmer of light on this I would be forever grateful. The only condition or disease that has a similar linking symptom that I could find is diabetes.....not a very comforting thought. Nothing has ever been said, though, about my blood test results concerning any diabetes fears so I'm at a complete loss here!!!!!!!
 
Gentlest of hugs to all,
John
*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 9/30/2008 5:25 PM (GMT -7)   
I don't want to alarm you, but that "sickly sweet smell, I believe is a sign of something more serious. i can't remember exactly what, but maybe diabetes? Check with you Doctor.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 9/30/2008 5:29 PM (GMT -7)   
Hi. John!  I know our sense of smell can be altered with fibro.  I hadn't heard of your particular problem but I did Google "fibromyalgia sense of smell" and someone was saying they were smelling odors...bad ones... but no one else could smell them.  That sounded like you.  I didn't go through all the links, but it does sound like you really aren't alone here.
 
Other places I checked said it could be a sign of diabetes.  I would get that checked out if I were you.  I'm not trying to cause  you stress but we are not doctors and this is a new one for me.  It's just wise to speak to  your doctor.
 
Hope this helps.
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 9/30/2008 6:38:28 PM (GMT-6)


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 10/1/2008 8:43 AM (GMT -7)   
Acetone/diabetes is the first thing that came to my mind but that is easily diagnosed and very treatable. Another option may be a sinus infection. These can really mess up your sense of smell if there is an ongoing problem. Definitely get to the doctor about this, and if possible I wouldn't wait until you see your rheumy. Don't want to alarm you but brain tumors can also mess with your smell mechanism.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 10/1/2008 9:00 AM (GMT -7)   
John I sometimes smell odors that aren't there but it's not always the same odor. It's like suddenly my brain recalls an odor. I know I have become a lot more sensitive when it comes to certain smells. I've never brought this up to my doc.
 
I also hold up during crisis situations and then fall apart afterwards. I have my worst anxiety after going through a bad time and then when I am relaxed it hits. It must be adrenaline.
 
I also feel guilty about complaining about my problems cause I know there are so many people in this world that would gladly trade their problems for mine. That is what is so great about this forum, we can come here and vent to people that understand our problems, get it out of our systems and then go back to doing the best we can.
 
I've been working very hard on positive attitude and positive self talk to bring myself up out of the dumps I've been in the last year and a half but we are only human and Sherrine is the only person I know on here that is always Little Miss Sushine. I think she could watch her house blow away and somehow find something positive about it. The rest of us can't be that positive 100% of the time. We are normal she's not. devil
 
luv and hugs
Marlee
 
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


RedDiane
Veteran Member


Date Joined Jun 2007
Total Posts : 906
   Posted 10/1/2008 9:09 AM (GMT -7)   
John, I don't want to scare you, but for a few weeks I was having trouble with my eyes and no one seemed to care, until I mentioned that I also was having strange smells that no one else noticed. Boy, did that make the drs. sit up and take notice. I had a head CT and a bunch of other tests and it turned out to be nothing at all. But apparently strange smells is a sign of a brain tumor of some kind and they wanted it checked out right away. Maybe you should see your dr. soon. I hope it's nothing bad. Good luck. Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 10/1/2008 1:30 PM (GMT -7)   
Thank you so much for your responses ladies.....I really appreciate it! Upon further internet research, there seems to be only about 4 or 5 other possible links to that particular type of smell besides possibly fibro and none of them are very pleasant. On the diabetes link they also mention two other, more serious diabetic conditions......diabetic ketoacidosis and acidosis which both sound just lovely! Then, the brain tumor link only increases the fun! And, I accidentally stumbled across a site written and maintained by nurses that describe the "smell of impending death" as a sickly-sweet fruity acetone-like smell and that all experienced nurses know of this. They go further to explain that dogs and cats can smell this as well and will get really close and personal with you as if to comfort you in your final days! Man, this just keeps getting better and better!!!!! (So far my dog and cats don't seem to be any more "interested" in me than the usual "FEED ME" interest. LOL)
 
Diane, I HAVE been having more trouble with my eyes recently.......even before the hurricane......blurriness and especially bad stabbing, throbbing, searing pains in my left eye that are worse and more frequent than usual. And, with most of my fibro/cfs/cebv symptoms returning full blast, confusion and concern are starting to get to me a little.
 
Jeannie, I never noticed that you had diabetes until I re-read your sign-out thoroughly. I'm so sorry dear.......if anyone should know about that particular smell it would be you. I sure do hope you have it under control, at least a little if not fully!
 
Marlee.....thank you so much for your support of my bruised ego from my little personal pity party. It helps so much to be reminded of just how human we all are!
 
Sherrine & Tyno3......I'm going to approach this as if it is nothing more than another fibro/cfs "thing" because worrying about what it "might" be will only make me feel worse. I think EVERY single illness and disease feeds off of and absolutely loves stress and I don't think they need even more ammunition!
 
To all, just one more favor please. As far as seeing a doctor, which doctor would y'all recommend......my PCP who is also an internal med specialist or my rheumatologist who was referred to me by him? Which would be more qualified to order the more speific tests, cat scans/mri's that this might require?
 
Thanks and the gentlest of hugs to all,
John
*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!


RedDiane
Veteran Member


Date Joined Jun 2007
Total Posts : 906
   Posted 10/1/2008 1:42 PM (GMT -7)   
John, my eye dr. sent me to my internist who ordered the brain tests. Of course they found nothing in my brain at all turn Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


packrat
Regular Member


Date Joined Jun 2008
Total Posts : 70
   Posted 10/1/2008 1:51 PM (GMT -7)   
It could simply be ketosis often experienced if you have a very low carbohydrate diet.
 
Hope this helps,
Russ
-------------------------------------------
Fibro, anxiety, depression, high cholesterol
Citalopram, clonazepam, amitriptyline, crestor
Curcumin, Q10, Vit B12
 


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 10/2/2008 2:37 PM (GMT -7)   

Hi Diane and Russ!

Thanks so much for that link Russ. It's nice to know that there are conditions not quite so dire as those others that it might be. I've emailed my PCP, an internist, with these newer symptoms and asked for his advice as to whether I should make the appointment with him or my rheumy and how concerned I should be.

Ohhhh Diane.....you poor dear!!!! smhair   How TRAGIC......NOTHING in your brain!!!! OMG smhair .......listen.......I know of 2 outstanding and completely reliable & trustworthy people who can help you right now with this problem. TIME IS OF THE ESSENCE HERE!!!!!  Please, waste NO time in contacting either "The Wizard" who resides in a cool place called "Oz" or that outstanding doctor who was such a huge success with that patient......ohhhhhh.......what the heck was his name.......oh yeah.......Frankenstein!!! The sooner you act, the quicker you can get a good, QUALITY brain and be on the road to recovery!!!!!!!!!!! Please let me know how this comes out for you!!!!!!Hurry!!!!!

Oh BTW......Sorry......you'll have to "Google" them as I don't quite know where they reside or their phone numbers!!!

Gentlest of hugs,

John


*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!

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