It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Fibromyalgia Message Board

  • Diagnosed with Fibro 2 months ago

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 09-24-2004, 08:06 PM   #1
    Toodle
    Member
    (female)
     
    Toodle's Avatar
     
    Join Date: Sep 2004
    Location: US
    Posts: 69
    Toodle HB User
    Diagnosed with Fibro 2 months ago

    Was diagnosed 2 months ago. Does anyone else have twitching/jerking all over? It drives me crazy - my legs, arms, hands, everything. Pains everyday and they seem to migrate. Have terrible rib pain that goes thru to my back on left side. Tingles sometimes in that area in my back. Hurts so bad. Also pain going down my left arm. Weird skin sensations, burning and tingling. Scalp sensitive to touch. All this came on severe after having a baby 7 months ago, although I suspected I had chronic fatigue syndrome for years now. IBS and fatigue came on after mono infection when I was 15. But my symptoms have never been this bad. Rheumatologist said it's fibro. Headaches alot. Hurt in temples and above eyes and sometimes behind right eye. Anyway, just wondering about the twitches/jerks if anyone else has them. Fibro has really brought up my anxiety level. When there is always something hurting and strange pains and sensations, it just makes me anxious. Hard to not feel like you're dying. I'm on trazodone, xanax, neurontin, but nothing has helped. I have been on some pain meds like oxycodone and they helped the pain. What to help the twitches/jerks and major neck tightness? Any replies would be appreciated.

    Trying to hang in there

     
    Sponsors Lightbulb
       
    Old 09-24-2004, 09:01 PM   #2
    tam821
    Senior Member
    (female)
     
    tam821's Avatar
     
    Join Date: Nov 2003
    Location: PA.
    Posts: 160
    tam821 HB User
    Re: Diagnosed with Fibro 2 months ago

    Hi char, welcome to the boards here, I dont have twitching, so i cant help much, but i am sure you will get many replies. best wishes, tammy

     
    Old 09-25-2004, 07:16 AM   #3
    Icefire
    Senior Member
     
    Icefire's Avatar
     
    Join Date: Jul 2004
    Posts: 211
    Icefire HB User
    Re: Diagnosed with Fibro 2 months ago

    Welcome to the board Char. I have the twitching/jerking. It's only muscle spasms. They hurt and are annoying, but calm down they aren't going to kill you. I have many of your same symptoms and have for awhile. I've had Fibro for years but this muscle spasms/jerking thing just started 3 months ago. Try to relax about it, you're not going to die. Anxiety attacks are much worse than the Fibro.

    Good Luck
    Chris

     
    Old 09-26-2004, 07:22 AM   #4
    apriltones
    Senior Veteran
     
    apriltones's Avatar
     
    Join Date: May 2004
    Posts: 1,068
    apriltones HB User
    Re: Diagnosed with Fibro 2 months ago

    hi charl, i totally unerstand as im in same situation as you. I have little boy who is one next week, my symptoms started the night i had him. Im hoping i have fibro as all symptoms match, im having mri first to rule out ms etc and if that comes back negative then im being referred to rhumi, tell me how yours started? what was your first symptom? took ages for doctor to listen, io had pnd also, think it was because they wouldnt listen and it just got too much. I have twitches too, not painful just annoying, love april xx love to hear from you and swap storys!!

     
    Old 09-26-2004, 09:11 AM   #5
    Jenetti
    Senior Veteran
    (female)
     
    Jenetti's Avatar
     
    Join Date: Feb 2003
    Location: Tx
    Posts: 1,125
    Jenetti HB User
    Re: Diagnosed with Fibro 2 months ago

    When the twitching/jerking got bad i asked my doc about it and she suggested taking calcium with magnesium for it. Takes a couple of weeks to work thru it, but it goes away if you stay on them.
    Jen

     
    Old 09-26-2004, 02:16 PM   #6
    Izzybella
    Inactive
    (female)
     
    Join Date: Jul 2004
    Location: U.S.
    Posts: 117
    Izzybella HB User
    Re: Diagnosed with Fibro 2 months ago

    ..................

    Last edited by Izzybella; 08-01-2007 at 09:11 PM.

     
    Old 09-26-2004, 02:57 PM   #7
    Toodle
    Member
    (female)
     
    Toodle's Avatar
     
    Join Date: Sep 2004
    Location: US
    Posts: 69
    Toodle HB User
    Exclamation Re: Diagnosed with Fibro 2 months ago

    Thanks everyone for responding. I am going to try a calcium magnesium supplement cuz it seems my twitches or more like jerks are just getting worse. No, they don't hurt but are annoying & depressing as I feel someday my whole body is going to jerk out of control. I have them all over, not just legs. Well, I'm 29 and just had my first child 7 months ago. She was a month early. I was on bedrest for 1 1/2 months before I had her cuz of high blood pressure. So in the end it turned into preeclampsia with HELLP syndrome. Baby was healthy! Anyway every since then I have felt like a truck ran over me. Twitches started a few weeks after delivery and I have pain in my flank on both sides. Had my kidneys checked by CT scan, IVP & blood tests. They say they are fine but I just don't know as my back and flank hurt from my ribs down on my left side and just flank on right side. This pain has been non-stop everyday. There are areas that really hurt when I push them in these areas. Have had pain under my left breast in rib area that goes through to my back (where it hurts the most) which they can only come up with costochondritis as the problem. Why would that last 7 months? I have to wonder if something was damaged from me being on bed rest for so long & having to lay on my left side because of high bp. Maybe the baby was pressing against something in that area. Don't know what test to have them run to look for damage. I have had 2 CTs of abdomen, bone scan, IVP, sonogram of kidneys, gallbladder and blood tests. They have checked ANA for lupus I guess and told me was normal. Also checked C reactive protein & was normal too. My scalp is sensitive to the touch every since I had the baby. When I was on bedrest, I got severe headaches, I think from the high BP. Those have subsided but I still get headaches often in the temples & above my eyes and feels like behind my right eye. They are not as bad as when I was pregnant. They did do a head CT after I had my baby to check why I was having them & found nothing. I have had an MRI of head to rule out MS. Have had MRI of spine & neck & showed no pinched nerves or disk problems. After all this, a rheumy ended up saying I have fibro but didn't really say what to do for it. He just increased the neurontin that I was already on for this pain in my ribs, which hasn't helped, and put me on trazodone & xanax. I have been having a lot of anxiety, of course.

    I had mono 3 times within a year when I was 15 & after that started with IBS then fatigue & just feeling no energy. I got used to that & thought I probably had chronic fatigue syndrome somewhere over the 13 years. In fact a dr even told me I probably had that years ago, but he never told me what to do. Then sometime back around 1995 I started getting tightness in my neck jaw area. It would come & go. But last May it started happening everyday. Then I became pregnant in June. They have tried physical therapy but didn't help. My neck feels so tight & jaw too. Sometimes I get a numb type of feeling in my face along my jaw. This just won't go away. I feel like I have swollen lymph nodes in my neck & armpits but I don't know. It is painful along my ribs and armpits & down my left arm.

    So the neck tightness, IBS & fatigue & various aches were there before pregnancy but after this pregnancy everything is so much worse and all the new symptoms (flank pain, muscle twitching/jerking, rib pain thru to back, scalp pain, burning feeling on skin, headaches, burning in my feet sometimes & more aches everywhere). I have been to the dr so many times, I just feel like they are missing something serious. Can fibro really cause all of this? It seems like all the want to focus on is anxiety. Drs have also said my thyroid is prominent. I have had thyroid function tests which came back low normal and a thyroid CT scan which was normal so they say no big deal. Oh, also on the abdominal CT is showed my spleen was at the upper limits of normal, so they said no need for concern. This was in June. I had them recheck it by sonogram a few weeks ago & they said was normal, they didn't tell me if it was still in the upper limits or not. They said not to worry as long as it's not getting bigger. The only other abnormal was my sed rate was 21 back in May or June and as of a few weeks ago has moved up to 30. They don't seemed concerned but I am. I know that means inflammation or infection when it's elevated, but they say they worry when it gets to be 50 or 80. Well gee, I still think there is something causing mine to be above normal. Don't know if inflammation from my acid reflux could cause this to go up.

    Sorry my post is so long, just wanted to get my story out there. I would love to hear others stories as well. Especially if you have jerks, flank pain, rib pain or any of the other weird things I'm going through. I feel so helpless with the drs. I want to feel better, I have a 7 month old daughter to enjoy & it's so hard when I feel terrible all the time & am constantly worried I have something that's going to kill me cuz of all the pain & weird symptoms. So worried about my kidneys & what causes the lymph node pain & feeling of swelling.

    I'll end now. Thanks everyone for your support. I look forward to continuing to post on this board & building friendships with you who know what I'm going through.

     
    Old 09-26-2004, 03:14 PM   #8
    Toodle
    Member
    (female)
     
    Toodle's Avatar
     
    Join Date: Sep 2004
    Location: US
    Posts: 69
    Toodle HB User
    Re: Diagnosed with Fibro 2 months ago

    Also, I wanted to ask Jenetti is there a certain supplement of calcium mag you take. I've heard of some powder forms. Do you use powder or pills? And to April, I'd like to hear how things have been for you the past year since your baby. So your symptoms started the night you had him? Sounds like me, although I had IBS & fatigue before, just not all the other crazy symptoms. Hope your MRI turns out negative, I'm sure it will, but let me know. My baby is a girl. Was your son your first? Also, I forgot to mention in my mile long post that I also have flares of pain in my elbow joints, mostly in the left elbow. Also, I noticed Izzybella talked about a muscle relaxant. I've heard of fibromites taking Flexeril I believe it is. I think I'll ask the doc about this to see if it would help as well. I want to feel better! Wish I could find a doc who is knowlegable about this. I will persist & persist till they find out for sure it's nothing else & get me on a plan to make me feel better. So glad to talk to everyone!

     
    Old 09-26-2004, 04:21 PM   #9
    Jenetti
    Senior Veteran
    (female)
     
    Jenetti's Avatar
     
    Join Date: Feb 2003
    Location: Tx
    Posts: 1,125
    Jenetti HB User
    Re: Diagnosed with Fibro 2 months ago

    Hey Char,
    My doc recommended caltrate, several times a day, but left it up to me. She also gave me a few other choices but cant recall what those were. But ive used several different types , the one im using right now (have been for a year now) is from Shaklee products (hope i can say that). Its the Super Cal Mag Plus, which also contains phosphorus, vitamin D (which is needed to make it work), vitamin K and a few other vitamins and supplements in it. Also contains zinc, which is also something i believe needed to help the calcium/magnesium work better. Its not a vitamin tablet per se, but a huge dose of cal/mag with some extra ingredients to help. I take 6 tablets a day and i get the huge container that has 540 tablets which last me a good while. Should be online info on the stuff. But im sure theres plenty to choose from, ive never tried the powder kind. I did go thru several before i found this one and this is what works the best for me.
    Also i do take a muscle relaxant as well. Skelaxin never worked for me. Soma (carisprodol) is what works (after trial and error) and i take it together with a lortab pain pill (hydrocodone). The combination of the TWO taken together at the same time, that helps take the edge off . Took the doc and myself a long time to find the right combination that worked best for me. RIght now im in a very bad flareup so am taking it EASY lol as much as possible.
    Do keep trying tho to find the combination that works best for you AND even tho it might be the right med/combination the dosages will also have to be trial and error working with your doc. The majority of people with fibro are on a pain med/muscle relaxant combination. Ask your doctor about it. Hope this helps and i will pray you find the right combo for you hon. DONT GIVE UP!!
    Jen

     
    Old 09-27-2004, 07:35 AM   #10
    bluelakelady
    Senior Veteran
    (female)
     
    Join Date: Sep 2004
    Location: blue lakes, northern california
    Posts: 5,737
    bluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB Userbluelakelady HB User
    Re: Diagnosed with Fibro 2 months ago

    dear char,
    you will live to become a stronger smarter woman that you ever thought you would be. fms is a door that opens to connecting with the reality of your body. i have had fms for more than 9 years now. there is no magic pill. don't waste your time looking for one. there are many pills that help with the side effects of fms. you will have to try them to find your balance. there is no quick fix for this. you are not going insane, tho a good shrink sure comes in handy for learning new coping skills. there will be days you are sure something is really, really wrong and you get scared. what i do is wait one week. if the problem is still there at the end of one week i see my doc. what i do not do is get scared. fear makes fms worse. you become your own worst enemy if you allow fear to rule your mind. there is only one death rate associated with fms, falling asleep at the wheel of your car. you can prevent that by how you schedule your day and your nap time. your central nervous system and your immune system are misfiring and sending misinformation to your brain.
    be good to yourself.
    peace,
    bluelakelady
    ps. take a walk before you go to bed. exercise before retiring seems to help with sleep and pain relief the following day. best of the best to you friend.

     
    Old 09-27-2004, 08:02 AM   #11
    Jenetti
    Senior Veteran
    (female)
     
    Jenetti's Avatar
     
    Join Date: Feb 2003
    Location: Tx
    Posts: 1,125
    Jenetti HB User
    Re: Diagnosed with Fibro 2 months ago

    Good advice blue! That is so true of stress. The extra stress releases something in our bodies that just seems to trigger a flareup for sure. COping skills are greatly needed and even then sometimes a flareup will occur simply because of the way you move your body in a second. I try to exercise every single day, even a little bit. This flareup , believe it or not, im thinking started when i made the bed. My comforter is kind of heavy for me and i was making the bed (in a hurry mind you), and just extended my arm a bit too far, and triggered something off on my left shoulder. FRom there it just continued. Thats why im taking it easy and yes my bed will be made but with a lighter blanket on top only. No need for comforters right now , lol so you just adjust to how things are going on in your day.

     
    Old 09-27-2004, 10:43 AM   #12
    apriltones
    Senior Veteran
     
    apriltones's Avatar
     
    Join Date: May 2004
    Posts: 1,068
    apriltones HB User
    Re: Diagnosed with Fibro 2 months ago

    hi charli, im worried about my mri a little as was worried it be ms, doc said my symptoms are likre it but neuro exam was normal. I have tingling in vaginal area,groin,on my back and down my arms. I also suffer from aching all over and itching. I have started having migranes too. love April

     
    Old 09-27-2004, 05:29 PM   #13
    jill williams
    Junior Member
     
    jill williams's Avatar
     
    Join Date: Mar 2004
    Posts: 33
    jill williams HB User
    Re: Diagnosed with Fibro 2 months ago

    YES I GOT THE JERKING AND TWITCHING. MY BODY KEEPS JERKING. MY ARMS LEGS AND SO ON. I GOT BURNING , ITCHING , ALL KINDS OF WEIRD SKIN SENSATIONS. LEFT ARM PAINS. I ALSO HAVE THE SCALP SENSITIVITY. I AM REAL ANXIOUS AND HYPER WHICH I THINK IS COMING FROM THE SKIN SENSATIONS BECAUSE THEY MAKE ME CRAZY AND JUMPY. I GOT IT ALL I SWEAR. TAKE CARE JILL

    Last edited by jill williams; 09-27-2004 at 05:34 PM.

     
    Old 09-27-2004, 06:35 PM   #14
    Toodle
    Member
    (female)
     
    Toodle's Avatar
     
    Join Date: Sep 2004
    Location: US
    Posts: 69
    Toodle HB User
    Re: Diagnosed with Fibro 2 months ago

    Jill,
    Thanks for sharing. Gosh, it's just like me. I am real anxious too. But when you are jerking and your skin is burning & itching you feel like you need to jump out of your skin. It's a vicious cycle. Have you talked to your doc about this? Did the doc say it was from the fibro. When I was diagnosed, the rheumy didn't tell me much. I'm going back to my reg doc this week and giving her a list of my things that bother me most and ask her what we can do. My things are: Pain in left rib cage (front, side & back - back is the severe pain), twitching/jerking all throughout the day all over body, and pain in my flanks down to my hips (hurts to push on multiple areas in my back & sides - feels like lumps but don't see lumps) and I would like to mention the anxiety as it's really acting up but if I do then that's all she'll focus on. I think I'm going to mention trying a muscle relaxer and something for pain. I read in some post somewhere about a new med that is supposed to be coming out called Milnacipran. I'm going to ask her about it as I would be interested in trying. Supposedly it's supposed to help with fibro. Anyway, what has your doc told you?
    Thanks and wishing you better days!
    Char

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    anxiety/depression,etc a result of the pain,etc from fibro or Mikeyson3 Fibromyalgia 7 04-24-2010 04:00 PM
    I was diagnosed with fibromyalgia ten years ago. katsie2 Fibromyalgia 10 11-29-2009 12:02 PM
    Newly diagnosed with fibro NY 1009 Fibromyalgia 35 01-18-2008 06:49 AM
    Fibro my whole life diagnosed at 26 yrs old Kerry21 Fibromyalgia 2 08-04-2007 08:24 AM
    Just diagnosed-Have question about aspartame.... sayNOtoanxiety Fibromyalgia 3 02-16-2006 01:43 PM
    How is Fibro diagnosed? Casey924 Fibromyalgia 6 10-19-2005 11:43 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 08:10 PM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!