Odd symptoms, wanted to see if anyone had any ideas!

Im still fairly new here, and i hav been trying to post and give as much advice and support i can, but unfortunately i often do not hav much else to add to what others have posted, and not that much insight... but anyway i wanted to thank you all for all the info i have learned here..even tho i dont post often, i read on the forum everyday, so i am here! lol but for all of those that dont kno, i have endometriosis and adhesions which cause my pain, and quite a bit of it... but i also have immune issues and endocrine issues and some other things...

But, i wanted to ask if this sounded familiar to anyone or if anyone knows these symptoms or any of them.. i do hav an appt with a primary but its not till october (which is a whole different story...) but wanted to research and stuff before! so here it goes:

past 3 months (ish) i feel lik a fricken truck has hit me when i wake up every morning, extremely achy, but it does get better thru the day, but do always hav aching pains all thru out my body, not the whole body all the time but always some part of it... Im very forgetful, lik i could not tell u what i ate for dinner rite now, and its just really bad for short term memory (btw im only 19 years old, so i dont thing memory issues are normal...) my joints, esp. my knees and hips but all the way from ankles to toes are very painful esp when they r in use, and also when it rains? but its to the point that if i sit with my knees bent more than 90 degrees for even 2 minutes i cannot walk for an hour and straightening them is extremely painful... i have also been extremely fatigued, and it seems lik no matter how much sleep i get im still tired! its quite frustrating; ive always had sleep problems but i can get 3 hrs one nite feel horrible, but also sleep from 9 pm to 5pm the next day and go back to bed at 9 pm the same day and sleep for 10 hours... i hav no idea what controls that, no caffine, good "sleep hygine" and all that...

Now the two symptoms that take the cake are: i have been having odd muscle twitches... some everyday, not always all day, sometimes for 2 days straight,but mainly in my thumb, sometimes into forefinger (both on left hand and im right handed...) goes into my back, sholder, eyelid (left too), and sometimes in the back of thigh and buttox( both on right side)...

AND, extreme sensitivity in some parts of my body, again it moves around, sometimes in my arm, somtimes in my thigh, those are mainly the areas that have this, but any touch is lik extreme pain... lik a blanket touching it just ever so barely is lik scraping skin off.. or lik a severe burn just happened in that area and ur punching it! very odddd

Ok, im so sorry i went on for so long, wasnt intended to, but im just really confused and weirded out, and wanted to be as detailed as possible to give u guys a good picture... i hav done some poking around on the net, and im very worried about Fibromyalgia... i hav been on lyrica and topamax in the past (for a diff reason) and one paralyzed me and one made me so zoned out and very depressed, so if i do hav fibro, what would/could be done about it? aarrrggghhh so frustrating, again thank u guys so very much for reading and any and all opioins/comments/suggestiong/ conclusions... posts alltogether are appreciated!

Thank u guys so much for so much!

Katherine

Thanks for the post, and dont ever worry about asking questions! The appt in october is with a primary... thats y its so far out, my old primary well she said some really mean things and turned on me (another really lonng story...) so i had to call to get an appt to hav a appt to est this new one for my primary, and that was the first available... i havent seen any specialists for this/these problems, but i did see an neuro probably just about a year ago, and was beyond tested, so i dont think it is that, just cuz everything was perfectly fine then... and i cant really get a referal from this new primary doc, as i havent seen her yet and stuff... but i do a ob/gyn endocrinologist on thurs and i was going to talk to him about it just to see his POV, cuz i kno he probably cant do anything... and i have poked around a bit on the fibro board as well as other medical sites and most of it seems to fit the fibro, but it also fits arthritis and other things, except the twitching, and thats the thing that freaks me out the most...
Thanks again!
Katherine

 

 

     Dear Kathrine,

 

     Hey there *huggs*. Good to see you again. It sounds like you need to keep a pain journal, write top 5 things bothering you end of each day. Just real quick before bed. And another thing, I dont remember if you said on chat night... Do you take something to help you sleep? You have ALOT of my symptoms. I mean with sleeplessness... well yea with the joint issue too, really...!!Getting off track!!  Maybe a cup of valerian root tea before bed til you can see your doctor? only helps for about hour and half thou. October is a long time away. I know you said itwas , like whole nother story. But mind my asking why so long a wait? I have a new "doctor' of sorts, he is a popular one. Have to wait a month and half to see him. Well worth it tou, darn good in his feild.

 

*huggs*

dani

Hi Katherine,

I feel so bad for you!  I agree with all that has been posted!  You really need to get in to someone ASAP, has anyone done a full blood work up to rule out a virus?  If I'm reading your posts correctly the extreme fatigue, joint pains and twitching started 3 mos ago?  Viruses can cause major problems, some people think...oh its only a virus, not so.......something is affecting your entire system at this point by what you desribe.

Hopefully, your Endo will help you with testing, if not ask her for a referral to someone who can!

(((((((((((((((((Katherine))))))))))))))

XXOO
Patti

Thanks to all of u for ur posts and im going to try to awnser all the questions in order....

I was definately going to talk to the endo doc to see if there is anything he could do or test for or at least to refer me to someone... but i didnt hav any of these symptoms when i saw the neuro, and he didnt find anything, so i hav no diagnosis for anything neurological or muscle/skeletal....

i do keep a pain journal which i write in 3 times a day, so that will help to see if there is a pattern, i cant find one, but maybe someone else can... i hav tried almost every med possible for insomnia, and the only one that works and doesnt hav dangerous side effects is lunesta which i do hav some of, but i cant take it every night, and i also lose my appitite on it so i dont lik to take it very often...i also hav tried tons of herbal/alternative options to help with sleep, none of which work... the whole thing with the doc in october was my old primary turned on me and told me i was addicted and needed to hav a stay in the psych ward (and she had been with me thruout this entire thing trying to find out what was wrong and was so helpful, which is y it was soo unexpected and hurtful..) and that was the last time i saw her, and ive had probs trying to find someone who is willing to be my primary, once they look at my med list... but the one i hav an appt with i saw her in the er once and she was literally lik an angel but has had a closed practice so it was hard enough to get an appt with her...

i have had bloodwork done pretty recently, i had surgery a month ago so they did a lot then and it all came back good, and they wouldnt hav operated if i had a virus or infection, a few months before that my allergist tested my immune system and found that i had no stored antibodies so im almost wondering if my immune system has declined more and that could be part of it? (they also found tons of inflamation in the surgery and my gyn wants to look into chron's more, so that also mite be something...) And yes the fatigue and joint pains and all the other aches and sensitivities started aroung March/April, at the time i thought it was all because my pain was at an elevated level, but its been much better since the surgery and these things have not, so im pretty sure its something else now; but the twitching has been a recent, prob a few weeks ago development...

i have had my thyroid checked, it was a tiny bit low about 6 months ago and they didnt think it was low enough for me to start synthroid or anything but i was definately going to mention that to the endo doc to hav him check that to see if that progressed...

Thanks again for all the ideas and info, i think ive been putting off going to new docs for so long that i just now hav a tons of stuff to sort thru, but ive had so many bad experiances with docs that i only trust 2 in my town, so that has definately played a role in this... i think there is at least one thing maybe two or three that r just all getting worse and i really need to just figure out what they r so i can start feeling better, but im always worried that they will tell me im a hypocondriac or obsessed with my health, or that all this is in my head (which ahs happened before)... Anyways thanks again and feel free to ask more questions or post with any more ideas! thanks!
Katherine

thanks for the post and u r fine with ur questions! i hav never used and rec substances or even had alcohol aside from communion... and its also frustrating because no one in my family does hav anything lik these symptoms.... i hav horrible genetics for all types of cancer,high bp, stroke, heart attack, heart faliure, and stuff lik that but no one ever had anything lik this, but the stuff that has already been diagnosed was supposedly hereditary too, and no one has had any of those things either, so it wouldnt be that unordinary...

and i kno the importance of getting a good doc, cuz ive been thru that with my gyn doc, so thats y i am waiting till october to see this particular doctor... its just that it is so far away i m worried that things will only get worse... but i will defiately talk to my endo doc i see tomarro to see how that goes, but im really hesitant to go back to a neuro, just cuz he didnt find anything the last time and it wasnt the best exp in the world and i always fear the " u were just here, and nothing was found, so why r u back?" and the eyerolls and thinking im paranoid about every little thing... all that stuff...

Thanks again and to everyone else feel free to ask any questions and keep posting, im trying to gather as much info and stuff as i can so i can be really prepared for the appt!
Katherine

Sorry you are having problems. The twitching sounds like something that I have. Beign myoclonus. The neurologist describes them as sudden myoclonic jerks. They are rapid twitches that come out of no where. I have them more in the evening. They are easily control with a small amount of Klonopin .25 mg.  I also suffer from restless leg syndrome. I keep meaning to ask if they are in any way related.. Good luck  in your search for answers. 

If you go to
www.medhelp.com, they have a whole forum on thyroid disorders
and you can ask a doctor a question, but you have to be pretty specific..
sometimes the questions are answered free, sometimes they have a charge.
This was about all I could think up in a way of an answer...
Good luck to you and soft hugz...
((((((((((((((((((((((((((((Katherine)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

{{{{{{Mystic_Duck}}}}}:

 You poor dear! I mean it, so young and dealing with such a cluster of symptoms. My heart goes out to you; but by coming here I think you're being smart. You also seem to manage your pain process very well. I'm impressed and hope that soon you'll get some clarity.

But...to add to the "what if's": A friend of mine went to practically every specialist in the phone book over a 2 year period. Her symptoms would come and go, they would stir up one system and then quiet down and another symptom would rise. She went to all sorts of alternative treatments as well (including a psychiatrist just to shut the other MD's up -- she's quite sane & not imagening it). As always -- and sounds like your case -- no one looks at the whole person, just through the lense of their specialty.

She then went to a naturopath who suggested she had Lyme Disease! Well, after some sort of rare blood tests (cost $1200 or so and done in few labs in US or World) it came back -- yes, she had had Lymes. I don't add this to add to your stress, but consider it info. The thing about Lymes is the way it adapts to treatment,so say it's attacking your liver and you treat the liver -- it moves somewhere else! Smart little microorganism, heh?

I hope you have family and/or friends to support you. To take care and wishing you the best.
"OO"