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

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 7/6/2009 8:55 PM (GMT -7)   
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... rolleyes
 
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 confused
 
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? shakehead 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
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/6/2009 9:37 PM (GMT -7)   
Katherine,
I'm so sorry you're struggling with so much, and that it's not yet diagnosed. When I first started reading your post, I thought of fibro, too. Have you posted to the fibro forum? You said you read a lot, so reading some of their posts may help you see if you "fit" the profile.

I'm not sure if the twitching is a part of it. I do think you need to see a doctor before October. It sounds like your symptoms are progressing, am I reading that correctly? If so I would call and get in at least to your PCP soon, and get a referral to a specialist. Perhaps a rheumatologist to rule out RA and other similar systemic problems. Maybe you've already done that.

Don't know if this helps, but hopefully someone else will come along that can help more. I just wouldn't wait until October. The twitching sounds nerve related so a neurologist would be another possibility. Have you already seen some of these specialists?

Sorry for all the questions!

PaLady

Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 7/6/2009 10:07 PM (GMT -7)   
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
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/6/2009 10:27 PM (GMT -7)   
Katherine,
Please do talk in detail to the endocrinologist on Thursday. Does your insurance require a referral from a primary for you to go to a specialist? Many have changed that policy and allow someone to self-refer, and based on your talk with the doc on Thursday maybe you could do that. A rheumatologist would be my guess. What tests did the neurologist do, and were you having the twitching back when you saw the neuro? What's your current diagnosis?

Ok, enough questions for one night! Just be sure to list all your symtoms for your doc on Thursday and if he's got suggestions and your insurance permits it then try to get in with a specialist soon, especially if you sense this is something that's progressing. I wasn't clear about that.

I hope someone else comes along to offer you more!

Hugs,

PaLady

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/6/2009 11:44 PM (GMT -7)   
 
 
     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
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/6/2009 11:57 PM (GMT -7)   
 
 
   Oh gosh, Youve got one heck of a full plate! Sounds like your on the right track. That sleeplessness isnt helping things atall.   sad   ..! Hey! You think they could call you if someone cancels? No wait that woudlnt work, you need a new patients work up. smhair     shakehead
 
  *huggs*
   dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 7/7/2009 5:33 AM (GMT -7)   

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

 


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 7/7/2009 6:46 AM (GMT -7)   
Hi Katherine,
Have you had your thyroid checked? I had those symptoms & they have pretty much gone away since I started on the Synthroid. I was diagnosed with subclinical hypothyroidism. I agree with the others about checking with your endo. S/he should be able to test for that.

feel better,
frances

PS-- Feel free to visit the Thyroid Forum. We're new & don't have many posts yet, but the information that is there & the personal stories are quite good and have a lot of details. :)
Moderator -- Depression Forum


Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 7/7/2009 6:25 PM (GMT -7)   
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
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


SpaceButler
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 7/7/2009 6:45 PM (GMT -7)   
Hey Katherine!

I am also new here and learning still, so I don't know what my advice is worth, but I agree with some of the more established members of this community. I think you need to seek out another specialist or two. A neurologist has already helped me immensely, in getting me an MRI and (soon will be) analyzing it. Also, a Rheumatologist would be essential in contributing to your diagnosis/treatment. As your symptoms affect your whole body, it could be a complicated process to narrow down possibilities and do diagnostic testing.

Also, if previous doctors have not been of help, please please seek out others. Even if you have to go out-of-town, it is important to find a doctor that you can form a positive relationship with.

If it is not too personal (And not against forum rules), have you ever used any recreational substances for long periods of time? I've heard of some people developing one or two of the symptoms you mention from long-term recreational substance use? Also, is there a family history that is in any way similar or related to your symptoms. Please do not answer these questions if they are indeed to personal, but think about them yourself and tell any and all doctors you meet with the pertaining details, as these types of questions can be important in narrowing down the diagnostic possibilities.

I'm so sorry about your pain, insomnia, and everything else. It sounds very tough to deal with, and I know how agonizing it can be when you don't know what is causing it!

Hugs,
Logan
Web development, programming, camping, chess, go, painting


Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 7/8/2009 11:51 AM (GMT -7)   
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
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/8/2009 12:24 PM (GMT -7)   
 
 
    Dear MysticDuck,
 
     fear the " u were just here, and nothing was found, so why r u back?"
 
    You might find this funny. They take blood, my doctors? Not as frequently now, but every other month for various test / re tests. I'm not even gonna pretend like I know why... waaay outta my feild of understanding right now.  In anycase, sometimes a few days after tests I get calls?
 
 "You have appointment schedualed with  Dr.XXX ( Stranger!) on _______day. Please show up 30minutes early if the forms havnt been recieved by mail. "
 
then said appointment comes
 
"Why are you here?"
 
"They took my blood??"
 
Not only am I in small confined space with strangers BUT they usually don't know why I'm there to begin with. rolleyes  
 
*huggs*
dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 7/8/2009 12:57 PM (GMT -7)   
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. 


Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, central apnea, collagenous colitis, pain, swallowing and respitory  involvement,  Implants: intrathecal pump  & neurostimulator.  Extra features: O2 & wheelchair

 

Post Edited (Stella Marie) : 7/8/2009 3:29:04 PM (GMT-6)


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 7/8/2009 5:49 PM (GMT -7)   
Katherine,
I can definitely relate to feeling like a hypochondriac. ;) When my pain & depression were at their worst, I had my thyroid tested a few different times. My TSH came back between 25-28 pretty consistently, but they docs all told me that anything less than 30 didn't warrant meds.

This last time, when my hair was falling out, I had my TSH tested & it came back a 6. My T3 & T4 were fine, my this PCP felt that any time a patient has thyroid symptoms & has a TSH of 5 or above, even with normal T3 & T4, they should be on meds. The Synthroid has been a godsend -- joint pain is down, depression is better, energy is WAY, WAY up, bp evened out, hot flashes/chills went away, nausea improved significantly, period changed from 2-3x/month to only once per month, and I'm sure I'm missing some things. I know it is a hotly debated topic among doctors about when to treat for thyroid. Some say when there are symptoms & TSH is 3 or above, some say 5 or above, some say TSH plus either T3 or T4, some say all of the above & TSH has to be 30 or above. There is a wide range of opinions out there. Only you & a medical professional can determine what is right for you, but I have found that the Synthroid has really helped me a lot -- cut down on need for pain meds, cut out need for anti-depressants, improved anemia (don't need as much Iron supplements), etc.

It's up to you, but if it were me (based on what I know now- I started trusting my doctors & now have changed my mind) I would talk to people in the different Thyroid "camps" and let them explain what they think the advantages are to wait-and-see vs. starting you on a low dose of thyroid meds.

feel better,
Frances
Moderator -- Depression Forum


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/8/2009 6:14 PM (GMT -7)   
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)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 7/9/2009 7:22 PM (GMT -7)   
hey everyone!
had my appt with the endo doc today and thought id let u kno how it turned out! it went well his nurse is a *bad name*...but the doc is great...really awesome had new idea and everything and a good guy which was so nice and we hav some new things to consider and maybe try if the pain ramps up lik it does about every 6 months...so maybe next time i wont hav to hav surgery?!?!?! we can hope... but i also told him about all the inflamation, gastro and other odd symptoms and he reffered me to a rhematologist who ill be seeing on the 20th...he also took blood for some thyriod tests so we will see about that too! i dont think i forgot anything but again thatnks for all the caring and info, and thought ud want to now how it all turned out!
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


Obtuse1
Regular Member


Date Joined Feb 2007
Total Posts : 114
   Posted 7/9/2009 7:51 PM (GMT -7)   
{{{{{{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"
[2}Dx: Post Spinal Fusion chronic pain since 1984;Polyneuropathy;Meniere's Disease, Left ear deafness & severe tinnitus on Left; Major Depressive Disorder (DX);
Hx,Meds: obtuselyoblique1.wordpress.com/


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/9/2009 8:52 PM (GMT -7)   
Mytistic,
So glad to read you're getting some direction, and let's hope that leads to some answers!

PaLady
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 02, 2016 1:17 PM (GMT -7)
There are a total of 2,731,736 posts in 300,955 threads.
View Active Threads


Who's Online
This forum has 151128 registered members. Please welcome our newest member, Diane82256.
272 Guest(s), 9 Registered Member(s) are currently online.  Details
Artist Mark, Tirzah, tennisplayer, Mrs. Brady, Girlie, Hilander64, Mustard Seed, 5678, Myself 09


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer