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do you suffer from dizziness?
19 Replies
lili - August 13

I was dx with fibro 3 years ago. Just recently I have had spells of dizziness that has turned in to being dizzy and lightheaded most of my days these past 2 weeks. In the past the "spells" have come and gone. This time it seems like it's (dizziness) is here to stay. I have been to the doc, who tells me it's Vertigo, but does not give a reason for it. So far, I have missed one whole week of work, and am worried about my job. Have any of you had any experience with the "dizzies"?

 

islandguy - August 13

I have had fibro for 5-6 years now and haven't found any dizziness with the syndrome itself. However I have taken some meds that have contributed to the dizzies!
You haven't changed medication lately have you?

 

JJ1 - August 14

I have occasional dizziness. One time I did have it bad like you describe where it was not going away and someone suggested that I could have an ear infection. I saw my gp and she said my ears were fine but prescibed a medicine (can't recall the name now) that is for vertigo. I don't know if it was the medicine or not, but it gradually got better. You may want to get your ears checked just to be on the safe side.

 

maryfw - August 14

I was recently diagnosed with Neurocardiogenic Syncope. It means when you stand up or get out of bed your blood pressure drops and then your heart races to try to keep your from passing out.

Have you ever passed out or come close? It explains alot of my symptoms, dizziness, near fainting, palpitations, fatigue, heaviness in the chest, hard to breathe. All kinds of things that doctors for years have told me is just "STRESS".

Wish you well.

 

lili - August 15

I have been to see my pcp twice. The only thing he can tell me is that it's Vertigo. He told me to take Clonazapam.
Well, that's not really working. I guess I am trying to dx myself so I can get back to work. I have been out for over a week now. Not a good thing.

 

pdljmpr - August 15

yes...I get dizzy spells quite frequently. Seems all I have to do is sit with my head just the wrong way...lol It starts then about 3 minutes later it is gone. I also have dizzy spells that last most the day....but those are fairly rare.

 

JJ1 - August 15

Clonazapam, that is what they gave me for vertigo.

 

linda brown - October 21

I too have dizziness, I actually fainted one day because my blood pressure dropped. I hate to say it, but you may get to the point that you can't work, good luck

 

TNUtammy - October 21

Do I have dizziness? Only every single day of my life now, among other things. I've actually experienced vertigo before and let me tell you, its much more than dizziness. With vertigo you are so dizzy that it makes you incredibly nauseous. Then you throw up, maybe several times in fact. The dizziness is more like the room is spinning in 2 different directions at the same time while moving up and down. I think your doctor is mistaken since fibro does have the potential to cause dizzyness but does not usually cause vertigo. The times that I have experienced vertigo are usually when I first start taking a new medication, or I am in fact sick. Some people never experience dizziness with fibro at all, just like some people do not experience a burning sensation in their feet or painful areas in their skin that seem to move around. It can also be caused by a drop in blood pressure like several people here have said, but sometimes it just seems to happen to me for no reason. I'll even be sitting or laying down and it happens sometimes.

 

Gabbie - October 21

I do have times when I have felt lightheaded. It seems to come out of nowhere and is usually accompanied by a feeling of nausea. I found that when it happens, I try to sit if I can and remain as still as I can because it seems that it passes a lot faster. I don't know if constant dizziness can be associated with fibro. I agree with JJl about having you ears checked because a problem with that can definately effect the equilibrium.

 

TNUtammy - October 22

Speaking of equilibrium, that reminds me of something I learned this week about CFS. I know a lot of us here have CFS and FM so some of you might just find this interesting. I can't seem to find the original link, but here are some new criteria I found that doctors are using to diagnose CFS: Low blood pressure, particularly while standing; Slightly elevated oral temperatures, but less than 100 degrees F (which are part of persistent flu-like symptoms); Increased heart rate;
A positive Romberg test (unsteadiness when standing with eyes closed). That last one seems to me like CFS can even mess up your equilibrium, which could possibly be adding to the lightheadedness that I already experience. Since I have both CFS and FM, its hard for me to tell which condition the symptoms are coming from. I also noticed that a few of you mentioned low blood pressure, which just so happens to be one of the new criteria for CFS and could be causing that.

 

Robin1237 - October 22

I think this is Lyme disease, caused by a bacterial infectionborreliosis) which inflames nerves and soft tissues. Vertigo is one of the fluctuating symptoms. google for borrelia symptoms and click on the short symptom list. You will see vertigo listed. The folks at http://flash.lymenet.org are extremely knowledgeable about what is going on and can help you find a Lyme-literate doctor to work with.

 

TNUtammy - October 23

I think we've been over this before, but it is not Lyme disease, Robin. Each and every one of us has been tested for every possible detectable illness that could be causing these symptoms. Yes, our symptoms may seem a lot like lyme disease, but thats simply because a lot of these symptoms are present in a lot of other conditions as well. The number one symptom of fibromyagia sufferers is widespread pain. Fibromyalgia is diagnosed when pain in 11 of the 18 known tender points is present. Fibromyalgia is a known chronic illness and is not a syndrome, unlike some tend to believe. Now a lot of us also have Chronic Fatigue Syndrome so I could understand wanting to rule out a lot of conditions (like lyme disease) before coming to the conclusion that a person does have CFS. Thank you for your concern and I understand that you would like to educate us on the dangers of lyme disease. All I will ask is that you better educate yourself on how Fibromyalgia is diagnosed, as well as the symptoms since this is in fact the Fibromyalgia Forum. I would also like to add that dizziness can be a symptom of almost any known medical condition at one point or another. Nearly every medication on the market lists dizziness as a possible side effect.

 

Robin1237 - October 23

TNU -- your point is well-taken about dizziness having multiple causes -- I agree. Re fibro, I've had it for 26 years, I was in FM support groups for years, it was just a huge mystery. My fibro symptoms started three months after the tick bite - first sore shoulders, then a stiff neck, then full head-to-toe muscle pain. Then Insomnia, sensitivity to light, ear ringing, hormonal complications, loss of energy, TMJ, etc etc. Flash-forward 25 years later, I find out the tick gave me Lyme, I did clindamycin antibiotic 150 mg every 6 hours and the fibro pain went to zero in one week, along with a reduction in fatigue, chemical sensitivty and ankle swelling. If the all-over muscle pain goes to zero in one week on an antibiotic, such that I have no more muscle pain and I don't have to lie down anymore, I think that speaks volumes. That's why I here reporting it all. Re tests, if they aren't the best tests, done at the best labs, Lyme can be missed. Igenex is the best lab. Two western blots are the best tests, not the elisa test. And even then, the disease can be missed if someone has a strain that the lab doesn't test for, or the person isn't making enough antibodies to show up on the Western blot antibody matching test. That's why Lyme-treating doctors consider Lyme disease and coinfections to be clinical diagnoses and to do antibiotic trials. I am just wanting to continue a discussion here in case folks here haven't heard of Lyme or know anything about it or how it's detected or treated.

 

TNUtammy - October 23

Thank you for your concern, but I think each of us has secretly hoped that our symptoms were that of any condition that could be treated. Lyme disease would be a welcome condition in each of our cases, simply because it can actually be treated. Believe me, we've all asked our doctors about every condition imaginable in hopes that maybe its something besides fibro. Honestly, sometimes your comments can be a bit hurtful to those of us who still have this condition and cannot be treated by antibiotics. In my case, the first thing I was tested for was anything that could be caused by a tick bite because my mother one time got rocky mountain spotted fever from one. She knew the dangers of bites like this and like you, just wanted to make sure. Believe me, we are all very well informed now if we weren't already. I'm sure we would all appreciate it if you would limit your comments about lyme in a gesture of sensitivity towards our conditions. Thank you. In light of the topic of this thread, it might be better if we all try to keep the conversation geared towards symptoms like dizziness and what we can do to allieviate it.

 

lisa1 - October 23

TNUTammy, You are right about the blood pressure and temp. I finally have a doctor who specializes in FM and CFS. I have just seem her and one of the first test was a blodd pressure upon standing . I could not believe there was such a difference. She states that explains why I have some of my dizzy
moments . There have been some studies in a FM clinical trial that directly relates to blood pressure and body temp for some FM sufferers.

 

TNUtammy - October 24

Thanks Lisa. I was particularly interested in that article because it mentioned something about having trouble with balance while standing with eyes closed. I honestly can barely even do it because when I close my eyes, I really do start to lose my balance. Most people can close their eyes and still have a good sense of where they are and be able to stay upright, so I've always thought that was kind of weird that I couldn't. I've also noticed that I will lose my balance if someone turns out the lights or the power goes out. Even if I'm standing completely still when it happens, I still tend to get a little wobbly until someone turns the lights back on. I don't know if there's a medical term for that, but it seems to me that most of my balance is through sight instead of through my sense of equilibrium. I'll have to look into this more to see if I can explain it better. I'm pretty sure it has something to do with the inner ear too like someone else suggested.

 

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