Balance is awful; legs so weak, UGH!!!!!!!!

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Regular Member

Date Joined Dec 2008
Total Posts : 176
   Posted 1/19/2009 5:43 AM (GMT -7)   
Hi, all!
Like I have mentioned before in other posts, my balance is very off, I need to hold onto to things while walking and I have fallen down a few times before (thankfully haven't hurt myself badly). Every time I get up to walk or to play with my ferret, I feel like my knees are going to always give out on me.. and sometimes they do!!!!!; A lot of times now my legs get so weak I have to fall to my knees and sit there for a while. And it isn't just when I am in a flare.. on my good days where I'm not in much pain, only achy as you all know of, my balance is still off; my legs, still very weak.
I am going to my rheumy THIS WEEK! YAY! She and I have lots to discuss. But I wanted to ask you's before I go there, what do you's think I should do about this???? Honestly? Especially since my rheumy doesn't believe this problem is even associated with the Fibro!!!!!! (I know SHE'S the doctor, not me, but she doesn't seem to know much about Fibromyalgia AT ALL) What do I say to her???? Do I go to a different doctor about it??
I feel lower about myself now than I have ever imagined I even could.. just the fact that this time last year, I walked fine, even ran when I wanted to. I can't believe how much Fibro can take away from you in so little time. I feel empty inside and angry. mad
idea  Does anyone have highly functioning legs that I can switch with, who wouldn't mind the lack of freedom and anger that goes along with it? smhair
Lol no? Okay, worth a shot smilewinkgrin
I'll take anybody's input, thank you all so much!!!!!!!
21 years old
Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Veteran Member

Date Joined Nov 2008
Total Posts : 2858
   Posted 1/19/2009 6:13 AM (GMT -7)   

Jenna...the first Rhuemy I went to pressed on all the trigger points and I levitated off the table.  However, SHE did not believe in fibro and dx'd me with myofascial Pain syndrome, for lack of anything else to write on the form.  "Go with God, have a nice day, peace be with you, and take two aspirin and call me in the morning."  That was fifteen years ago.  I have since found one that knows it is real.  My advice is to not spend anymore money on these doctors that blow you off, and find one that will spend the time to go through ALL your symptoms and recommend a serious treatment plan.  If you find a doctor that you have faith in and he/she thinks something else is going on along with the fibro, then at the very least you can deal with it with confidence.  Rhuemy's that roll their eyes when you ask about fibro should have their licenses taken away.

Sorry you are having such a difficult time.  My legs and arms have been weak at times also.  There was a period of time when I couldn't even hold a pen to write a check.

hang in there and let us know what your doc says.  Hopefully, she will recommend someone who can figure all this out for you.



fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium

Regular Member

Date Joined Jan 2009
Total Posts : 120
   Posted 1/19/2009 7:08 AM (GMT -7)   
I get weakness a lot too, I don't have the dizziness though, I wonder if that might be caused by some of your meds. Good luck at the doctors you should make she they know everything.
Fibro, interstitial cystitis, migraines, rotated femur, bunion on rt ft, hiatal hernia, for just a few.

reglan, prilosec otc, nadol, citrilipram, flexeril, and peroxicam, and Tylenol.

Irish Babe
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Date Joined May 2007
Total Posts : 1380
   Posted 1/19/2009 7:11 AM (GMT -7)   

Jenna, you wouldn't want my legs, I have the same problem. My legs would get very tired and weak and I would have to stop what I was doing. Last Feb I went to a boat show w/ my DH, we went up and down all the platforms to climb into boats we could never afford, but we could dream! As I was coming down one platform, my right knee felt as it were swinging backwards. I almost fell, I grabbed the ropes and my DH grabbed me. I went to my dr awhile after (I kept waiting to feel better rolleyes ) she sent me for xrays. I have tremendous OA in knee, since then, I've had other xrays and I know I have OA thru out my entire body. Together with FMS and other 'fun' stuff, it is difficult to walk sometimes. But after PT and doing home exercises, I don't see a lot of inprovement, so I walk w/ a quad cane when I leave my house. My house is small, walls and/or furniture are near enough to grab, so I don't land on my butt. I still do the exercises and I take walks on level areas, on my cane.

This DD takes a lot out of you and I know you're feeling bad on many counts, but don't let it get the better of you. I have had this since I was a very young child, possibly a baby. And I have many yrs. on you. Pace yourself, but don't give up and don't count yourself out.  

I have had drs. who did not believe, or didn't understand what FMS really is and what it effects. They can't really help you if they don't 'get it'. It would be best to look for someone who knows what it is and is willing to expand their learning while treating you. I wish you the best.

God bless.  Alice.

Veteran Member

Date Joined Mar 2008
Total Posts : 519
   Posted 1/19/2009 9:36 AM (GMT -7)   


I have had problems with weakness in my legs, my knees bother me the most and I usually have trouble with stairs. Thankfully I haven't fallen yet. If I did, I don't think I would be able to get up. I cannot lean on my knees because of the pain.

I would bring it up with Rheumy this week and see where she goes with it. If she still blows everything off then I would see if your regular doctor can refer you to a new Rheumatologist or you can start calling around and ask on the phone if they treat Fibro.

You need a Rheumy that is going to treat you and not one that only believes in certain things. It will make all the difference in your treatment. I wish you luck and don't forget to let us know how it goes.

Hugs!!  Margie


Never regret something that made you smile!

Fibromyalgia*Osteoarthritis Of Spine*Sleep Apnea*RLS * Depression*Chronic Fatigue*Allergy/Sinus*Menopause

Regular Member

Date Joined Dec 2008
Total Posts : 176
   Posted 1/19/2009 12:42 PM (GMT -7)   
Thank you, everyone, for your replies... and dolphin, I am not on ANY meds at the moment... so nothing is from that. Margie, I shall let you and everyone else know how my appointment goes!! Thanks again! xoxo
21 years old
Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 1/19/2009 6:06 PM (GMT -7)   
I read your other post about crutches before I read this one. I know fibro varies a lot but this sounds rather extreme in such a young person. I suggest you get another opinion no matter what your doc tells you.

Years ago I had problems with my legs collapsing, especially my left leg. Both legs were so weak and the left one would just give out randomly. I had a lot of other symptoms at the time but that was the scariest. After about a year I was diagnosed with Lyme Disease and after a few years of treatment, the weakness went away. I am one of the lucky ones that test positive for Lyme, many infected people don't. Far too many people are told they can't possibly have Lyme just because the test was negative.

Veteran Member

Date Joined Jun 2006
Total Posts : 1156
   Posted 1/19/2009 11:37 PM (GMT -7)   
I lose my balance. Several times I fell down staircases. It was fibro related. I just could not understand why I kept falling and tripping over things like street curbs.



New Member

Date Joined Mar 2010
Total Posts : 1
   Posted 3/31/2010 11:37 AM (GMT -7)   
Hi, u have all my sympathy! Initially my leg pain was diagnosed as an injury t the sacro-iliac nerve, after six months with the neuro-surgeon and complaining that his treatments were not helping, just making me ill, I had other tests and a blocked artery was diagnosed. After surgery and two subsequent heart attacks my leg is worse - so now looking for other answers away from doctors. I have just read on this website that doing arm exercises for some reason helps. So now for two weeks will do arm exercises and then try going for a walk again - will let u know if there is any improvement if u would like me to.


Veteran Member

Date Joined Jan 2010
Total Posts : 1097
   Posted 3/31/2010 1:43 PM (GMT -7)   
Hi Jenna,

Have you been seen by a neurologist, to see if your balance issues are caused by anything else? It's always a possibility and one you should consider. I too have weakness in my knees and ankles, and there are times I use a cane if I know I'll be out for awhile. Stairs are particularly difficult for me, so I avoid them where possible.

If your current Rheumy isn't helping you, and/or isn't taking you seriously, then you should definitely find another doctor. You are too young to live like this without having exhausted every possibility and treatment. Good luck to you...I hope you get the help you need.

Conditions: Fibromyalgia, Chronic Pelvic Pain, FAI, Reynauds, IBS, Interstitial Cystitis, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (Surgical Menopause and drug related), plus physically unable to vomit due to Nissen, and I have extremely tiny veins...a joy for blood work or IV's)
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Tramacet, Cymbalta, Flexeril, Clonidine plus Vitamin D and Multi-Vitamin daily

getting by
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Date Joined Sep 2007
Total Posts : 41933
   Posted 3/31/2010 2:33 PM (GMT -7)   
Hi Amberlee,

I saw your post and wanted to welcome you to the forum. I am sorry to hear about your heart attacks, but glad to know that you are okay.

If you feel comfortable about it, start your own thread with an introduction so that we can get to know you better. I hope that you are having a good day today.

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

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