Newby with weakness questions

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Phwootie
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/29/2008 3:23 AM (GMT -7)   
rolleyes  i, This is my first post. I have been browsing for a week or so. You guys seem like a great bunch. I am sorry we have to meet this way. Anyway here goes. Insomnia. obviously 5o4am. freezing all the time. used to love the cold. just diagnosed with FM the rheumy says i must have had it for about 10 yrs or so based on history but i have literaly been "down" with it since July. For the first two months Iwas in so much whole body pain it was my bed or my husbands recliner 24/7. I don't even remember most of it. if i leave the hous i have to use a fore arm crutch for balance and steps cause a regular cane hurts my hand too much. i try to walk at least 5min a day like the doc says but when i do i usually end up having full body armand leg spasms while standing somewhere and need two canes alot of time and some help to get to a chair. then feel like i climbed mt everest. I am having a lot of weakness in my arms and legsfrom any repetetive motion like lifting my fork. also alot of pain in low back neck and ribs jaw face. muscle. somethimes i have to sleep on my knees with pillows under my belly to stretch my back to sleep and my ribs and shoulders hurt so bad. For thanks giving i wanted to do to something to participate so i grated the cheese. by dinner i couldn't pass the dishes on to the next person. I have had a coupel days where i felt half human. enough to shower w/out my husbands help in and out and washing my hair but i am starting to wonderif this is what you guys call a flair or what caus man its killing me. or at least ifeels like it. sorry i spewed. any advice will be greatly appreceated. my fog did spell check
 

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/29/2008 7:34 AM (GMT -7)   
Hi Phwootie and welcome. I'm sorry your having such a horrible time. Did you go through testing for MS, Lupus and RA before you were dxd with fibro???
 
Have you read the fibro 101 thread, second on first page, it contains a lot of info. It has some stretches in it that might be helpful. We really do need to keep moving. I found that out the hard way last summer. There is a fine line between doing enough moving and too much moving.
 
Fatigue is a big problem for me and the most frustrating. My goal is to find something that will help with that.
 
I'm glad you joined us and I hope we can help you to fight this DD.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 11/29/2008 7:35 AM (GMT -7)   
hi from one newbie to another!

i get the weakness thing sometimes, too, especially in my legs. walking up a flight of stairs can make me feel like i've just run a marathon. i don't have any great advice, but when i feel like this (i also get weakness in my arms after repetitive motion), i try to do some quick and light stretches-when it's my arms, i cross one arm over my chest, then press on it gently with my other arm. when it's my legs, i bend one leg behind me and press it up against a wall to gently stretch the muscles (very slow careful bends down to touch the toes can help, too)..hopefully my explanations make sense? anyway, these gentle stretches can help me feel a little better for a little while.

i wish i had better advice-i hope someone else here can give you some better tips-i am very sorry that you're feeling so awful, though, and am sending you very gentle hugs.

~danielle

Southernlady
Veteran Member


Date Joined Jun 2008
Total Posts : 844
   Posted 11/29/2008 8:39 AM (GMT -7)   
Welcome to our forum Phwootie.  Sorry to meet under these circumstances but glad that you have joined us.
 
I suffer more from exhaustion than pain but we all share different symptoms. 
 
This is a great place to come to learn more about fibro.  Hope you check in often.
 
God Bless!
Shannon
Of all the things that I have lost, I miss my mind the most!!!!


Green Grove
Veteran Member


Date Joined Oct 2008
Total Posts : 2424
   Posted 11/29/2008 8:59 AM (GMT -7)   
Hi Phwootie :) Welcome to the family :) You will find great advice from the wonderful people on this forum to help you out. . . Hope your flare stops hurting you soon :)
Much Love, Hugs, Peace & Comfort :)
Sam
 


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 11/29/2008 9:45 AM (GMT -7)   
Dear Phwootie: I wrote a longer response to you earlier this morning but my operating system is vista, not so good. I much preferred Windows XP but i had to buy on the cheap and sometimes Vista gobbles up my work. No big deal. The others that posted this morning covered pretty much what I was saying. As Fibromyalgis is a dx. of last resort, kind of what the doctors say when they can't find an alternative diagnosis for your pain. Therefore, I was wondering if your doctor ruled out lupus, MS, Epstein Barr virus, (mono) which apparently can stay in our systems many years after the initial infection, ofter chronic fatique patients show up with this virus. Once the obvious alternatives have been exhausted, often Fibro is the catch-all dx. Did the doctor identify 11 or more "trigger"spots, like inflamed nodules that when pressed hurt a lot and may cause you to lift up out of the chair,when pressed. that is the best identifier available to sugget Fibromyalgia as the diagnosis. Do you have endocrine system problems, for example I am hypothyroid, also menopausal. As you read through the threads, you'll see lot's of suggestions for dealing with the flares, and it certainly sounds to me, from your description, that you're in one now. I am sorry about that. I too am in a flare, presently, mostly due to being under a great deal of stress. I take amyltriptilene for my discomfort during a flare. It's got a few offputting side effects that make it difficult for many people to take. I grew used to it because when I was diagnosed in 1994, that was pretty much all that was available then. Either learn to live with the side effects or be in pain constantly. I chose the former. Others have a variety of meds that work for them, and some may work for you, others may not. I surely hope you can get some moist heat on the very tender areas and start to feel better soon.
Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 11/29/2008 9:52 AM (GMT -7)   
Hi, and welcome!  I'm so glad you found us.  It does sound like you are in a flare.  I take ibuprofen and Tylenol and malic acid/magnesium suppolements for pain and fatigue.  It's important to keep moving.  The more you sit and lay, the stiffer you will be and the more pain you will have.
 
There is a link to stretching exercises in the Fibro 101 thread that really help.  Walking is great too.  Stairs?  Well, when I visit my son for two weeks I have to climb stairs to his 3rd floor apartment.  The first week my legs are like rubber by the time I get to the top.  But, about the time I'm ready to leave, the stairs don't bother me much at all.  So that proves to me that I need to keep using those muscles to keep them strong.
 
I hope you will start to get out of that flare soon.  Hope to hear more from you!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40567
   Posted 11/29/2008 10:58 AM (GMT -7)   
Hi there,

I just wanted to welcome you to the forum. There are a wonderful group of members here and I think you will be glad that you have joined up.

Try to keep moving, the more that you move the better. There is a ton of information here and you will find that you aren't alone with this dd. Keep posting as we are here for you.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 11/29/2008 11:55 AM (GMT -7)   
Hi Phwootie, and welcome to the forums! You'll find this to be a very informitive and supportive group of people. Read lots and don't be afraid to ask questions.

I do get some weakness and fatigue, but only on the days when I fell really bad. I live in a split level home, and on those days, just goign up half a flight of stairs fells almost impossible. I've also drank my coffee through a straw b/c liftign the mug seemed liek too much effort. I have gotten so much better with the malic acid/magnesium combo. My fatigue is greatly reduced, I feel pretty much normal most days now, as long as I remember to take it. Read the thread on it and see if it's worth a try for you. Take care, and once again, it's nice to 'meet' you.
Waiting for appointment with rheumy (March 2009) to get an official dx. waiting, waiting, waiting....
Taking malic acid/magnesium combo, what a life saver! and amitriptyline


Phwootie
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/29/2008 3:30 PM (GMT -7)   
I have been tested and retesed for MS but they refuse to do a lumbar puncture. I am under a constant huge load of stress. which i have reduced as much as possible. just cant get rid of any more. Ive been tested for lupus and mono bla bla bla. The only blood test that has shown inflamation somewhere. Rheumy attributed to fm. Yes, I have all the pressure points. I do have a lesion on my brain but the neuro said it wasn't ms as did the 2nd opinion neuro. So, should I walk every day until i start to get a little shaky and the n rest? If it will help I will do it. Thank you all for your comments. gotta go. dcant hold arms uup to keybrd anymore. thanks

SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 11/29/2008 3:45 PM (GMT -7)   
i've got the lesions, too, and have also had a neuro tell me it was not ms (which is what my gp at the time thought it was) the neuro i saw told me he thought the lesions (i have 4 of them) were most likely caused by an infection. did you have any weird illnesses before you started having fibro symptoms? (i had bells palsy, which i am told is caused by the same virus that causes chicken pox)

Phwootie
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/30/2008 4:24 PM (GMT -7)   
I did not have any of the childhood diseases. I did have childhood migraines and still have one a year or every other year. Early onset menses w/severe anemea, ovarean cysts, extreme pain, and severe endometriosis misdiagnosed for 10yrs. Had to have a hysterectomy (complete) at 21. with endo lesions all over my abdominal cavity so laser ablation all over cavity. I was lucky enough to have had a daughter already. Hx: Car accident 9th grade. PTSD, multiple rapes, abuse, anxiety, depression, IBS, Fibro, Panic attacks, next to youngest sister committed suicide after all of the above. I am the oldest from my parental set and have always been the strong one. I broke down crying last week in front of my fatherinlaw. which i NEVER do. cant seem to control the tears anymore. and said I don't know why this is happening to me. I think he sayed the wisest words I have ever heard. ia m crying again. he said " you can only hold your breath for so long". thank you so much for being a nonjudgemental open armed "shoulder" I don't think I have ever had that beyond my husband or sisters. but it is not the same. I have never been good at making friends. I feel like I belong. that is a bold statement coming from me

Zoloft, Lunesta, Topamax, Flexeril, Neurontin

SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 11/30/2008 5:39 PM (GMT -7)   
oh my goodness sweetie! (i hope i do not offend with that-i mean it as a term of endearment) you have been through so much!! *very gentle, concerned hugs*

i have never had cysts or endometriosis, but i have had a lot of trauma in my background as well as two pretty bad car accidents within 6 months of each other when i was in 11th grade. i read somewhere that trauma from accidents can get fibro going in the system, but i don't know a lot of details about it. i do think it's just one of many ideas that doctors have come up with because they really don't know what causes it!

we have very similar stories in a lot of ways. if you ever want to talk, please feel free to email me.
 
Danielle, I removed your e-mail address cause anyone can see it and I don't think you want unwanted e-mail. If it is in your profile only Healing Well members can see it. Click on control panel where you filled out your info.
Marlee 

i hope you are ok
~danielle

Post Edited By Moderator (Marlee2) : 12/1/2008 10:20:05 AM (GMT-7)


Phwootie
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/30/2008 7:13 PM (GMT -7)   
Thank you so much, I forgot to add Klonopin sp? to meds.

GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted Yesterday 7:19 AM (GMT -7)   

Hi Phwootie and Welcome-

You sound exactly like me when my fibro first hit. I could not do anything without help! I had to have family or a girlfriend wash my hair and blow dry it because I could not lift a blow dryer and had horrible fatigue. Even lifting a plate to wash was too much for me. Mine lasted about 3 months. 

I started Zoloft and that slowly lifted the severe fatigue. Joined the group here, and started PT. It was slow going but I am able to do simple things again, go into grocery stores for a few things, short walks, simple cleaning, shower, and blow dry my hair. (Styled short so that it is easy to do)

I remember feeling so helpless and hopeless. And thought you got to be kidding me!!?? This is how my life is going to be??? It was downright scary! With time, and support and a good Dr. on your side this too will pass and you will start to feel better and able to do more. I would read, get on the computer with my "great group", watch TV, started looking at my photos to go into albums. Anything I could think of that I was able to do. The days would get "very long." 

I hope this starts to ease up for you soon, and let us know how you are doing, OK?

GamJill 

  


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted Yesterday 1:06 PM (GMT -7)   
Fibro, depression, and anxiety can cause the weak feeling.  The last couple of days my legs have felt like I had sandbags tied to them.  I know it 's the fibro but don't know what I did.  Probably nothing!  So, try to be easy on yourself.  You have lived through a lot already.  We will be here to help you with the fibro and help you to live a full and enjoyable life!  We have wonderful people on this forum and they are great at helping! 
 
The tears are good!  You are releasing all that you have held inside and that will help you "unload" the pressure inside you.  I know when I'm under a lot of stress and pain, a good cry helps me a lot.  I hope they help you that much too.  We really want to see you functioning and feeling much better.
 
Don't hesitate to ask questions.  We are here to help you live with fibro and be in control of it, too.  That's a "biggie".  A sense of humor helps a lot...especially with the fog!  ;-)  So, keep posting and we will give you a helping hand.  Have a good day!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Phwootie
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted Yesterday 6:38 PM (GMT -7)   
Thanks again, the immobilityh issue was scaring me. i am getting around a little better now. I have been having dreams of things that have happened. but last night i had a true flash back while i was awake. cant talk about it it was rough. i had blocked it out. even smells. thank god for my husband. anyway. not much sleeep tried a hot shower and had a good long talk with my baby girl 20yrs old. relaxing tonight and taking all the good advice from you guys. thanks for being there.
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