I think 'I scared myself to death! I shouldn't have looked up an illness. Now I think about whether it is a problem with me!

HI everyone, for the past few weeks, I have been stumbling, sometimes falling down - but with no dizziness. I swear - all I have to do at times, is just stand there and I somehow start stumbling all over the place. It's occuring more frequently now and I am awfully nervous about taking showers now. I can't bathe anymore because I can't get out of the bathtub!

This morning, when I got up, I went over to the bay window of my bedroom to open the blinds and out of the blue I started stumbling and fell back on the bed. Thank God it wasn't the floor. It just happens out of nowhere. Do any of you have this problem - with no warning at all?

Well, I made the mistake of looking up MS. because I have a friend who has it and I nearly scared myself to death! Along with other symptoms going on - it sure described me. However, I looked up the complete symptoms of Fibro - and it basically has the same symptoms. I always tell myself to NEVER look up anything that I 'suspect' because I start worrying about it, only to find out later that it's something entirely different! LOL

Anyway - I DO see the new female Rheumy the beginning of May - and I will be loaded down with tons of questions that I definitely want answers to. Right now, I am extremely careful just walking around my own home - for fear of stumbling and falling. Never stops - does it?? Love and BIG hugs!! Laurie

Hi Laurie,

I know, I have now had 3 brain MRI's looking for MS, so it's suspected with me. My Internist still cannot believe that I do not have other connective tissue diseases either. He is the one who first found autoimmune, and he now also sees me every 2 months. I guess that's as often as the insurance will allow, though if I need him, I go!

There are a few illnesses known as the great imitators, that is why it takes so much time to differentiate them when diagnosing us.

http://en.wikipedia.org/wiki/The_great_imitator

Honey, I think we all fall around, but make sure you talk to your Dr about this soon, could be you need to put your shoes on first thing, for the support, and if they are not giving you the right support, perhaps you need to look into a more orthopedic shoe, like the ones I wear, my son calls them combat sneakers, but they do the job!

Oh Laurie, Laurie, what are we to do with you? Tsk tsk (shakes head sadly.)

Actually I did the same thing myself! And you're right; many of the symptoms are similar. So, of course, like you, I thought it was MS. Until I got a cortisone shot in each knee and could move them again.

Moral of this story is, don't scare yourself thinking you have an auto-immune illness because many of them have the same symptoms as fibro! They really do. Plus they have other symptoms that aren't shared with fibro. It's really impossible to know for sure without the help of a doctor.

Of course, you can check the symptoms with your doctor to be on the safe side.

Good luck with your appointment, Laurie.

Hugs to you,

Petunia

Hi Laurie, I’m so glad you have an apt with a rheumy… Have you had an MRI ( brain ) usually that is done when r/o other things & before fibro is dx, but perhaps since these symptoms are new a call to your primary wouldn’t hurt.
This does sound scary… I know I would have done the same thing you did … Which we prob shouldn’t do

Be safe, sending big hugs !!

Blessings
dee

Hi Dee - I have had a few brain scans over the years, of which the last one was about 2 years ago. Everything checked out fine. But I have a feeling the new Rheumy will request another one. With all the stumbling that has been going on with me - I have finally come to the realization that I will have to get a cane. I have avoided this for a while - but I don't have a choice now. I have been unbalanced all day long today - but no dizziness.

I am depressed about it all - getting older and having all these problems. It's to the point now that whenever I go to see a doctor - it's never good news. I am apprehensive about everything that is coming up and just wish I could get everything done quickly and get it over with. Time will tell what's really going on with me besides the Fibro! Love, Laurie

Yes i am recovering from my 4th concussion this year from this problem. I think it's lupus affecting the central nervous system. I had to start using a rollator walker when I go out and I'll have to talk someone else into changing high lightbulbs for me.

I have been diagnosed with too much and still am not sure exactly why I'm falling apart and having terrible episodes. I have been given diagnoses for dysautonomia, Ehlers Danlos Syndrome, autoimmune disease, Raynaud's, Mast Cell Activation Syndrome and I need 3 surgeries on my neck and spine that I may or may not get. They now say I do not have fibromyalgia but what's the difference. I hurt! I finally stopped trying meds. They made me worse instead of better.

I don't panic about any of it but I do keep learning. I keep reading about other illnesses and I know of hundreds of illnesses I do NOT have YAY.

There is still something more wrong. I suspect it is porphyria. It fits my symptoms to a tee and is likely more of a problem than all the others for my daily life.

I'm almost 40 and have been struggling with health issues for most of my life. I thought last year I would end up in a wheel chair and it hasn't happened yet. So I worried for nothing.

It is so important to keep hopeful about things.

There are many things that can cause what you are describing. It could be early signs of MS but people can live long happy lives with MS. It is not a death sentence. It could also be hormones or a list of other things I will not scare you with ;)

Be strong and patient. It sometimes takes years to get the answers.

Laurie

Yes I have all those hassles too. I bump into furniture, and against walls, and easily fall. If I fall I cannot lift myself up from the floor, and that’s the reason I am housebound. I also cannot lift my body out of the bath, now I only have showers. However, I have had tests for lots of other neurological conditions so I know by exclusion that I don’t have something more serious.

It is also necessary to make sure that your medications are not contributing to your stumbling and falls.

I have met people with multiple sclerosis who are far more capable than I am, so I think fibro myalgia is seriously under rated.For me I think the more knowledge the better off even if we feel uncomfortable for a while.

I clear the house and makesure. My pathway is OK and walk very carefully after all the last thing I need is a fractured hip or leg!!Good shoes and o loose rugs. Cheers Barb

I too have many of the symptoms that would make MS a reasonable diagnosis to investigate. It is all scary. I actually have a dear friend who told me to look into MS because her symptoms were quite similar to all of mine and she just got he official diagnosis a few days ago. But I know what scaring yourself by the vast amount of info available on the internet. For a while I refused to look up Fibro. I was in denial, yes.

Well, working with medical terminology and billing for a while, I can tell you one thing, there are so many diagnosis that we all fall under at one period of time to another on any given day. Try not to worry, but consider getting tested just in case to ease your mind, if you must. I fall out of bed, I bump into walls, I drop things,...I've gotten into the shower with my underwear still on! FOG! I sure hope you laughed at that! Give yourself a hug, and here is one from me....

Good one made me laugh, I have yet to get into the shower with my clothes on, no doubt one day it will also happen to me!! barb

Hi Laurie, I too tend to stumble, am trying to walk every morning around the neighborhood and I’m sure all my neighbours think I’m drunk. Working on shifting my weight so when I do stumble I don’t fall. I find walking outside kind of scary because I can’t get off the floor unless I have a chair or table so I can used my arms as well. My balance has improved a bit with practice, but I have fallen backwards a few times, and not felt dizzy.

I think you’ll find a cane does help, and you might want to look at putting a grab bar in your shower, or a shower chair. , I also use a grab bar as a towel rack right outside the shower so I can grab it if I slip getting out of the shower.

Hope you’ve started a list for your new rheumy. Take care

Gentle hugs

Thanks to all of you, in helping me to feel better about what is going on with me. I may just have to get a few things that will help me around my apartment. I can get them free at a clinic that I am a member of. It's just that the stumbling and falling came so rapidly that it really frightened me for a while. In the past, I would stumble just a little bit - but never fall. But it has now increased and so has my 'fibro fog' as well. Sometimes when I am typing an email, I will forget how to spell a word and I have to think for a minute HOW to spell it right. Very annoying to me and it just reinforces the problems I have already. I do take things in stride though most of the time. But I am a little worried about the stumbling and falling. Hopefully, I will have answers when I see my Doctor in May. Love to all, Laurie

I feel your pain. Though I haven't fallen yet, my balance has gotten worse over the last year and I now use a cane when I leave my apartment. It really helps me feel safer when I'm out and there's nothing nearby to grab if my knees go out on me.

While I also have read lots of things on the internet, Bringing them up to my doctor is how I finally got diagnosed with Fibro and began to get treatment. What's funny is my mother told me to stop it and that I couldn't possibly have fibro, and look who was right! Bringing concerns up to your doctor is the best way to know for sure. It may remind them of soemthing they hadn't thought of before!

Hi Laurie, I rarely post but want to get my 2 cents worth in here on your/this problem. Like you, I stumble quite often and would fall down if I wasn't close to something to grab hold of. Also..just standing, I can stumble over my own feet for what appears to be no reason at all. Oft times when walking-my feet seem to have a mind of their own and an onlooker would suspect I'd have been into the 'sauce'. My Dr. suspects a type of Neuropathy and I'm waiting to see a specialist about that.

My fibro fog is much worse now too...along with visual problems that come and go. There is NO WAY I dare take a shower unless it's just sitting on my shower chair and using the pulldown shower head. Even then..I've nearly slipped off the shower chair but it doesn't seem to be a 'dizzy' problem. I haven't been able to bathe for nigh on a year now.....simply impossible to pull myself out even with a good 'grip device' attached to side of tub.

I also looked up MS and got the same scare as you so I can certainly relate. I've now promised myself to NOT look up anything unless my Dr. tells/asks me to. On the other hand, I've made my Dr. promise to look up things that just MIGHT apply to me. He agreed...but most likely only to appease me. ha.

In the meantime until you see your Rheumy..I do what SK does...always step into good supportive shoes. I have orthopedic mules for the house and would literally topple over if I don't wear them.

I agree with you..it just Never stops.

Kindest regards & gentle hugs,

Geranium

my sister has MS and before she got the dx she had lots of strange symptoms. she would call me everytime a new one can up and she was always afraid to tell the dr. if the dr wants a scan which as u said she probably will see if u can skip act scan and have an mri. if u have MS thenu will have what my sister described as leasions. i guess they move around and the number can very. she said each scan would be different as far as where the leasions whould appear. try not to worry.

all that being said i want to say that i read through all the responses and i have a few ideas no one has mentioned. i have suffered with horriable sinus problems most of my life even as a child. through out the years i have had sinus infections that were so bad i would bounce off the walls while walking up stairs and lose my balance while walking. i didnt have the usual symptoms of a sinus infection i had no runny nose or stuffed up nose no sore throat or cough from drainage. the only thing i had was sinus pain and headache. is u r having anykind of sinus problems see your dr. they can do x-rays of a ct to see how bad your sinuses r blocked. if this is the case and u r put on antibotics make sure u r put on 2 weeks or more of antibotics. i have been told many times that it takes a full 2 weeks of antibotics to treat a sinuss infection.

i have also had simular problems from an inner ear infection. i was waiting tables while bumping into walls,counters, and people. so i u have any head pain from your ears,sinus area or headache get checked by your primary. in case u didnt know u have sinus pockets around your nose and above and below your eyes. they go so deep they can even press on your teeth and cause pain.

i really hope that the answer is an infection that can get cleard up. if not and u get another dx try to be positive cause if they find the problem then u have a better chance at them finding a way to help. i am only 30 and have more dx than my 80 year old grandma. i try to take each new dx and say at least i have a name and a way to treat the problem. its not easy and it takes time to except a new dx.

just remember what ever the outcome we r here for u. lots of love and hugs

stephanie

Dear Laurie

Sometimes knowledge can be a dangerous thing if we start applying it to our life. I could understand it if you did not have any diagnosis. If you are really concerned then you should discuss it with your doctor. But your doctor is not going to be very happy or supportive if you are so often reading about an illness and immediately applying it to yourself.

Balance issues go along with fibromyalgia. So too does clumsiness. I have osteoarthritis in my knees and many other joints so for the reasons I just mentioned I use a cane all the time. I have found that I must not turn around too quickly or I will stumble or get lightheaded or a bit dizzy. I also must be very careful on stairs, the worst is coming up the stairs as I often stub my toe. So, I have handrails installed on my stairs because it's hard to use a cane if you're going down to the basement to do laundry. But I am very careful on the stairs. Do you have a cane? If not I would suggest that you buy one and start using it. Learn how to walk with a cane at home, how to go up the stairs and down the stairs because you will encounter stairs when you are out. If you live in an area where you have winter with snow and ice be sure to buy a cane with a retractable pick on the bottom. That is critically important when outside, but retract it as soon as you enter a building so as to not damage the floors. I hope this has helped you. I have a feeling you move too quickly in the house. Perhaps when you were younger you moved quickly. Not now because you will fall and you most certainly do not want to fall and break some bones.

Reminds me of when my teen told the doctor that she herd voices sometimes. I, of course, went right to mental illness, The Doctor checked her ears and found she had water behind the one drum.

Oh, my dear Laurie, I understand both the fear and the constant stumbling. The doctor will be able to tell the difference through an MRI. My symptoms were so similar to MS that the neuro checked. I was thrilled when she said I didn't have it, but I still had to deal with the stumbling.

I have canes scattered throughout the house, and I walk around using my hands to balance. My hallways are going to end up having a shadow from my constant use of my forearms to balance so I can get to the bedroom! Between canes and use of household structures (walls, counter tops, sofas, etc.) I have finally stopped falling. My waist muscles are the ones that keep me from balancing correctly and wobbly ankles don't help. In public I use a walker because it balances me on both the right and the left.

I hope this helps!

Hugs,

Scribelle

I fall all the time. It’s just part of it. I use a cane prescribed by my neurologist. Don’t be frightened; get the information. May isn’t that far away.

Hi Avenk - thanks so much for responding. When I fall, now that I am older, I bruise much easier too. Just when the previous bruises are starting to fade - then a whole new set of 'em crop up after another fall. For over 25 years I have had Fibro - and it is slowly progressing to where I am now. However the new onsets, stumbling and falling now combined with my being unbalanced, has ganged up on me pretty quickly.

I finally ventured out of my home today and drove to the grocery store. I had put it off because I was so afraid of being wobbly and falling. However, I decided that I can't let it get the best of me and make me a prisoner in my own home. I did fine - although still wobbly - but I had the grocery cart to steady me and got through it. I want to be as independent as I can for as long as I can.

Yes, I absolutely DO understand what you are going through and it is a comfort to know others know what I am talking about and going through. I trip over the slightest things now and talk about clumsy!! LOL Love, Laurie