Delayed-reaction flare and a strange, new symptom!

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

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

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.

 

luv and hugs

Marlee

 

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

It could simply be ketosis often experienced if you have a very low carbohydrate diet.

More info here: http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=221

Hope this helps,

Russ