ramakentesh Posted April 17, 2012 Report Share Posted April 17, 2012 Im trying to work out whether this is a POTS thing or an Ank Spond thing. I have these mornings where I wake up really achy and super tired. My whole body aches like I have the flu, and my sinus behind my eyes and ears ache. Sometimes POTs is worse on these days, other times it tends to lead to a flare up of Ank Spond.I assume its innate immune system activation but it sounds more like an Ank Spond thing or even a CFS like thing. Quote Link to comment Share on other sites More sharing options...
issie Posted April 18, 2012 Report Share Posted April 18, 2012 I'm sorry Rama, I was hoping you were feeling better - not worse. It's so hard to know what to do. We'll fix one problem and create another one. Then we have to add something else to try to correct that problem.I know that you've had issues with CFS feelings in the past. And also chronic sinus issues go hand in hand with that.Could you be starting to have a negative reaction to something you're taking? A med, or an herbal. I know sometimes after a length of time, my liver starts not working right and I start to get bad reactions to things that once worked. Didn't you have issues with your liver before too?Did they do the autoantibodies test on you for the AChR before you started the mestion? I had Mayo look back and they said my test was negative. I've not ever noticed the eye pupil thing though. Is this completely accurate as for diagnosis? Or do they sometimes just treat you and see if it helps?I hope that things will level out for you and you get it figured out. It seems when we think we do have it figured out - some other question comes up and sends us back to the drawing board. Hang In There - my friend!Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 18, 2012 Report Share Posted April 18, 2012 Sounds CFSish. Doesn't sound like POTS? and I don't know much about Ank. Spond - thought that had to do with spinal issues? Is this new? If so, (as Issie said) could it be medication related? I wake up so tired every morning, like I didn't sleep at all and my bones feel about 90. For me - I think this is CFS related. Quote Link to comment Share on other sites More sharing options...
issie Posted April 18, 2012 Report Share Posted April 18, 2012 Naomi,I know the feeling - I wake up hurting so bad it's not even funny and despite having slept (sort of) I feel more tired then when I went to bed. I do have sleep apenea but, the CPAP hasn't really stopped me from waking up all the time - nor do I go very deep into restorative sleep. Rama, have you looked at sleep apenea?As for pain - have you looked at EDS - it causes us to have lots of pain and also we get osteo-arthritis at a young age. I started noticing my arthritis when I was about your age - Rama. They now say there isn't a place on my body that they looked that I don't have arthritis. You know AS runs in my family too (my dad has it) and they say I've started degenerative changes in my sacrum - that is indicative of AS. Where do you hurt the most - in your lower back or where? One of the things that helps pain and TNF issues is Curcumin or Tumeric - were you able to take that? I think a whole lot of our issues are inflammation and that goes hand in hand with autoimmune things too. I think the inflammation comes first. (Just what I think.) Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 18, 2012 Author Report Share Posted April 18, 2012 Was that a yes or a no? LOL.And does me posting here again indicate that Im 'doing worse'?? LOL If so Ill stop Im not even sure if this is a POTS issue hence my post. See the problem is that some POTS patients have innate immunity activation as do people with Ank Spond so its hard for me to work out.Anyway - diagnosis of Ank Spond and POTS, not EDS. Not medication related because its been happening for years.Its like I almost have three things going on - POTS in relapses, Ank Spond in flare ups and this kind of achy, fluey thing that happens about once a month. Its weird as one being bad doesnt necessarily mean that the other will be kinda deal. Quote Link to comment Share on other sites More sharing options...
issie Posted April 18, 2012 Report Share Posted April 18, 2012 No, just when we have questions - people know something isn't settled. LOL - GLAD YOU'RE NOT DOING WORSE. I have no idea - hope you feel better!Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 18, 2012 Author Report Share Posted April 18, 2012 thanks! Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 18, 2012 Report Share Posted April 18, 2012 Interesting. I've had this same thing in the past but particularly bad in the past 2 weeks. Feel like I have the flu...except no flu symptoms. Feel feverish (but no fever, below normal), hot/chills alternating, achy all over, back is killing me, joints hurt, etc etc.I was wondering if it was somehow immune related myself. The pollen counts have been thru the roof recently here. While I wasn't having a lot of "allergy" type symptoms, it made me wonder if it was somehow triggering the immune system. Seems like whenever I get sick (with a virus for example), it really flares POTS symptoms, so it's been hard to tell what's POTS, what's immune related and what's tapering off the gabapentin. Whatever it is.....it's making me miserable!! I'm sure you all can relate. Quote Link to comment Share on other sites More sharing options...
issie Posted April 18, 2012 Report Share Posted April 18, 2012 Sorry, Chaos - wish we could figure ourselves out. I bet Dr. G wishes that too - (Private joke) I think a lot of my recent issues have been because of the pollen. I finally figured out the right allergy med combination for that though. Got, that sorted last night - thank goodness - today - ALMOST allergy free. I had been really miserable with that. Now, if I could get the right dose of clonidine figured out and see if there is something to help the dizziness it's creating. But, I'm thinking I'd rather be dizzy then a complete nervous, crawl out of my skin wreck with the anxiety/adrenal surges that the tacky was causing.I do wonder about autoimmune things - but, interesting learned that the autoantibodies test all were negative on me. Done back in 2008. Can that change? Wonder if I need to repeat the test. Also, wonder if that would really give you the whole picture if there are autoimmune things. I don't know enough about it to have that answer. Chaos, I remember you're saying yours was negative too - but, Dr. G is saying we both have autoimmune components to us and I have vitiligo and alopecia - definite autoimmune things.We are all such mysteries.Your hurting like that could be from coming off the Gabapentin because it defintely helps with pain and if you take that away - you will feel things more. Sometimes, we don't realize how much something is helping until we take it away. My dad is coming off it right now too and he says he feels the same way. His words - "I'm not worth a Happy!". So, he's not too happy and is hurting too.Hope you both feel better - really SOON!Issie Quote Link to comment Share on other sites More sharing options...
Valentijn Posted April 18, 2012 Report Share Posted April 18, 2012 If it's an ME/CFS thing (it does sound exactly like a crash), then it would be triggered by exertion. If you were extra active a day or two prior to the symptoms starting, then it certainly could be ME/CFS.The problem is that the amount of activity that can be tolerated can vary from week to week, so an activity that didn't cause symptoms a month ago might be too much now. The only way to know for sure is when you do too much and it happens again. I don't recommend trying to crash deliberately :-P Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 18, 2012 Author Report Share Posted April 18, 2012 I used to think it was activity, lack of sleep and all sorts of different triggers but now Im convinced it just seems to either happen randomly or if I am INactive for a few days. Cort at Pheonix Rising described a similar thing after he injested Rhodiola rosea for three days. Quote Link to comment Share on other sites More sharing options...
issie Posted April 18, 2012 Report Share Posted April 18, 2012 I've read that Rhodiola can cause people to crash big time if they have a tendency towards bio-polar. Also, inositol will send some into a crash.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 18, 2012 Author Report Share Posted April 18, 2012 It also increases TNF alpha expression. Quote Link to comment Share on other sites More sharing options...
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