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Avatar universal

Strange Symptoms a part of Fibro?

I am new to this forum. I'm hoping to find others who share some of the same symptoms. Maybe compare notes, ideas, offer each other support and comfort. :)

I have been diagnosed with Fibromyalgia by a chiropractor in 1999. I suffer with muscle pain (especially if I do too much like my laundry), weakness, tiredness, exhaustion, severe stomach cramps if I don't watch what I eat or when (I'm lactose intollerant and also have other food sensitivities), and a feeling like I'm falling. I get dizzy watching or playing 3D games, or some movies or anything with a lot of movement, or riding in an elevator. Strobing lights give me headaches. I'm also sensitive to extreme heat (like hot car in summer and my car's air conditioning doesn't work - no money to fix it) or very cold, damp weather (like when they haven't turned on the heat yet and it's cold and rainy, and 68 in the apartment). Both of which can intesify my pain greatly. Sometimes the pain is literally paralysing - I just can't move.

I have had to have friends do my shopping for me, and other errands because I just didn't feel I had the energy to deal with my symptoms in case they would get severe out somewhere. I only go out if I feel able. But even then, being in a moving vehicle, I do ok, but when I get OUT I would get dizzy, and sometimes my legs feel like they are numb and may drop out from under me! If I get back in the car and start driving, the symptoms seem to be a little less severe. At that point I figure I'm too ill to do the shopping altogether and head home. I would feel dizzy for a couple hours and very tired after that, sometimes going to sleep for an hour or two.

I often am told I'm having a "panic attack" and that if I just not be afraid and stop shaking it will go away! I even was on medication, taking therapy. NONE of which helped (in fact, it all made things MUCH worse so I had to stop because it was making me feel much worse).

Doctors often send me off to psychologists, etc. that insist *I* am the problem, that my THOUGHTS are the problem. I followed their program precisely, believing that I really was a problem to myself. Well, when they saw no progress, they blamed ME, even though I followed their instructions to the letter. And most frustrating was their insistance that I'm always thinking negatively when I know I was not thinking anything bad! I would say the same things to friends of mine (some which are outright blatently honest) and they agreed that the shrink, whoever was the one with the problems. Seems like ALL of them are (well, except my current councellor who also thinks the ones I saw were the problem and not me).

Also their 'breathing' and 'relaxation' exercises did not work.

Here's a good one:

Shrink: "Do you feel you're about to die?"
Me: "No, but I suffer so bad sometimes I wish I could just get it to stop."
Shrink: "Are you suicidal? Do you want to hurt yourself?"
At this point I give that person a very puzzled look. "No, I actually enjoy the good days I have. And bad days I just stay in and rest in bed."

At that point I'm told that is because I have 'agoraphobia' and am afraid to go out because I'm afraid of getting a 'panic attack', and denying my fears is only hurting myself. Yeah right.

When I have the energy to do so, I like to go for walks, talk to friends and neighbors, say 'hi' to new neighbors, even talk to the person next to me in a long line at the store. Smile at the children, help an older person or handicapped person find something in the store if it's not too far away. I'm a social person. Sometimes I even just visit the park for a little something different to do. I like being out and around. But lately I haven't felt I had the energy to do as much as I used to.

I read that panic attacks make you feel like you're losing control of your mind. When I'm very ill, the only thing I can think of is to make it stop. Becuase the suffering is so intense I can't bear it any longer. I try to focus on something else but sometimes the pain, or nausea or weakness is so intense I can't think at all.

I read that panic attack cause racing heart beat. I never even notice my heartbeat when I'm really ill! Except the times I feel too weak and faint and then you can see my shirt moving in sync to my heartbeat (and my bp/pulse monitor would show a pulse of 120). That's when I'm VERY exhausted.

I read that panic attack causes severe shaking, but stops if breathe deeply and just relax all your muscles. If I manage to just let my muscles 'relax' or go limp, it lasts a couple seconds and while my mind is on something else entirely, I start shaking out of nowhere much more worse than before before I can even catch it! Breathing exercises really don't do much to help either.

I read that panic attack sufferers always avoid the situations where they get attacks. Well, if I felt sick at the store I just go home and rest, then try again when I feel better. If the store is close enough, I often have no symptoms or they don't bother me. But if it's farther, I have to feel I have the energy to withstand whatever suffering I may encounter or else I stay home. Eventually I go back, get a bit sick, but get things done and get home and rest. But I DO GO BACK ANYWAY. And not so much of a worry or thought of 'what if I can't make it'. More like 'I'll try. If not, no biggie, I'll try again another day. At least I get out and enjoy a little drive, if anything.'

I read that panic attack sufferers never can pinpoint anything that brought on the attack. I can ALWAYS pinpoint when the intense suffering and shaking occur. Right when the pain or nausea or dizziness get so severe I can't take it anymore. Always happens that way. And once it stops, the suffering and shaking go away too. Then I sleep for a good long while. :) But I've never panicked for no reason.

Here's an example: In August I was watching a drama movie on my laptop computer when I got horrific stomach pains and nausea at the onset of my menstral cycle. It kept me up all night and part of the next morning. An ambulance WAS called. But they were talking about my needing emergency psychiatric care because they were certain all it was, was a panic attack! Uhm. No thanks. I didn't go in to the hospital becuase I didn't see where it would benefit me if that was their attitude. I'd just get worse. So I took my chances and figured if I passed out, then my coucellor (who stood with me) would call. But I stuck it out. She reminded me I've stuck it out before and done ok. Then my neighbor stood and we prayed and I rested. Eventaully I got some sleep. But I was in bed (except to go to the bathroom and make some rice or toast) for 3 days. Mostly sleeping or resting. After 3 days I got up and tried to do a few things. I slowly got back to 'normal' for the rest of the week. It knocked me right out though. Usually my menstral cycle doesn't bother me at all. And didn't since (so far - knock-on-wood). And I went right back and watched more movies on my laptop. Some scarier than the drama I was watching when I got sick! But I enjoyed the movies. So it's not like I avoided anything. And I got right up as soon as I felt able and tried to get back to normal.

Thanks for listening. I'm wondering if anyone else has had similar experiences, and what they were told by doctors, and if or how they got the help they needed. Maybe we can compare notes, chat about things and maybe be a bit of support to one another. :)
14 Responses
Avatar universal
Hi.  So far I've read up to the panic attacks and everything you describe is classic CFS/FM symptoms.  I have CFS & find I'm not as familar with FM.  So to narrow it down - they are all classic, familar CFS symptoms.

Panic attacks may be POTS, a form of dysautonomia common to CFS.  I wrote a lot in the last month or two about all sorts of things I know about CFS.  Rather than trying to duplicate, I know I wrote about POTS and NMH (both dysautonomia), maybe you can look for them. The 'attacks' aren't really panic at all, and there are some drugs that help for some people.  (Gotta love the 'some' used for everything having to do with CFS/FM.)

POTS stands for postural orthostatic tachacardia syndrome (my spelling may be way off).  I have NHM and the way I handle it is to use the 'pre-symptoms' as a warning and immediately adjust my actions to accomodate.  That way I never get to the bad stage of actually triggering it (in NHM the trigger is a 40 pt blood pressure drop, in POTS it's a lot like what you are describing).  For instance, if I get slight chest pains, or an 'uncomfortable sense', I sit down, stop doing physical stuff, and rest a few minutes until it's fine.  This process is very hard to describe in writing and subtle (other people don't even realize I'm doing anything to take care of myself.)  However it works!

It's very unfortunate that you've had to go through the 'all in your head' syndrome to such a huge extent that you're detailed all the ways it doesn't fit.  You know it doesn't fit and in my opinion the docs are the ones who are nuts that they can't believe a patients own sense of themselves.  I collapsed on the sidewalk a block from my house and by the time I got myself home, I'd decided "I'd have to be a lunatic to think this was psychiatric."

I'm a huge advocate of helping psych illnesses get the recogniztion of being the real physical illnesses they are and getting rid of the stigma and unfair unequitable insurance coverage for them.  However, it doesn't work when one is being treated for a different illness than one has.  Studies have shown concrete differences between depression and cfs such as in one the adrenal gland enlarges and in the other it shrinks.

I'll add that CFS gets misinterpreted because of the silly name.  There are people who have it without much fatigue (not that common), but it's usually not the symptom that's annoying them the most.  Usually the complaint is the postexertial myalaise and muscle problems, and the cognitive dysfunction.  You can have POTS without having CFS, so if you don't have the CFS symptoms otherwise, you could still have the POTS.

I can type more, but seems best here to give you a chance to google and see if I'm onto anything for you.  Let me know, one way or the other!  Your symptoms are NOT odd at ALL, and not very depression related.  I've heard of all of these frequently from people (I know in person) and in literature on CFS and I've had some of them.  I used to grocery shop by going to the car half way through and taking a nap just so my muscle could continue to the end.  And boy was I glad for all those unpacked boxes in the aisles that I sat on.  I used to joke that the biggest problem with the dizziness, was that I didn't always remember which way was up, I was so disoriented!  The heat/cold sensitivity is extremely common.  Even if it's not POTS, at least I can say I understand.  

Good resources are the CFIDS Association of America at www.cfids.org, and the CDC!  The Centers for Disease Control is doing a 1 1/2 year awareness campaign for cfs and has updated their website.  I have checked it out, but I know the people who monitored it.  NIH's site was also updated by someone I know (so I know they had good information.)  If those sites are confusing than just googling on POTS should help.  Dr. Charles Lapp has a good site I think and Dr. David Bell is a well known expert too.

Let me know what you think - and I'll try to help.  Have a good day - I hope.
Avatar universal
You don't mention if you have any of the painful triggerpoints relating to the diagnosis of fibro. Your "fog" is typical, and so is the fatigue and muscle pain. If I overdo things, it can flare up and be debilitating for 2-3 days. For several years I was also told it was all in my head.NOT !!! Try to find a good rheumatologist who specialises in fibro/cfs. A lot of times they go hand in had. a new drug called Lyrica helps  a lot of people for the nerve pain associated with fibro. Good luck, and stay strong.you're not crazy! You just feel like it sometimes! LOL
Avatar universal
Curls - Thank you for all the info. And both of you for understanding. :) I'll look into POTS and the other stuff you mentioned. The more I learn, the better I can explain it to a doctor. That's the hard part. I know how I feel. Explaining it so it's understood is another thing altogether.

LLWB - Yes, I do have painful pressure points. Sometimes very much so. I also get sharp or mild pain suddenly that comes and goes here and there throughout my body. In addition, reaching over my head is difficult and often painful. I have got to the point where I don't think much about the pain unless a pain catches me by surprise somewhere or intensifies a bit, or if I just sit for a minute and think about nothing, analyzing what I really feel like. I can usually then pinpoint sever areas of pain. Pain is my daily life. But I do manage.

I seem to react badly to many drugs, medications and even many foods. I am quite sensitive to things. So I am not on a prescription right now. Usually my body would over react and I would get bad side effects if I take anything. I have to be very careful what I take, and even when. Same way with eating. Some things I can have, but only at certain times, and sometimes I have to still be careful. Sometimes I can't each much of anything without a serious reaction (usually stomach pain and the runs). Even if I could easily have the same thing another time.

I am having a hard time finding a doctor near me right now but have two possibilities. As for rheumatologists, none make home visits and in the condition I'm in, travelling to the nearest one is way out of the question, especially if someone else were to take me. I'd never make it before I'd be suffering so bad I'd wish I was dead. (Which I certainly don't want to be!)

I've come across a couple other studies:

Phobic Anxiety Increases Risk of Sudden Cardiac Death in Women - BWH, February 2005


Lown Cardiovascular Research Foundation - Anxiety and Heart Disease

There is a high instance of high blood pressure and heart problems on my dad's side of the family and my maternal grandmother had strokes. So I have to be careful not to push myself to suffering bad or I could be putting myself at increased risk. This is another reason I don't go out unless I really feel I am able. Making things worse and thinking it'll just pass would not be a wise choice in my situation.

Right now, I have to wait until Monday for my friends to get my car to get it fixed. Then when I get it back (hopefully that same day or sometime that week), I'm hoping to check into this one doctor locally that another person I know told me about. I will take it one step at a time.

Meanwhile, I'm going to be getting a bit of rest this weekend, hopefully.

Thank you both for your kind words. I never thought I was crazy. It's just frustrating when others think I am and refuse to think otherwise. Well, mentioned, yes, I believe they are nuts! LOL!

I had a nice day today though. I arranged for my car repairs (frame part needs welding), got some shopping done at a very local store (poor car made it though!), and someone had dropped in for a short visit. Plus I worked a bit today (I work from home via internet part time, and I'm on Social Security Disability as well). We are getting nice weather so I try to get a walk in once a day, if I'm up to it. I hate staying in! :)

I'll keep you posted on what I learn. BTW, there's a nice fibromyalgia association: National Fibromyalgia Association (http://www.fmaware.org) that has all kinds of useful info. and once a year each May they have Fibromyalgia Awareness Month! :)

Avatar universal
I'm reading over the POTS site. I don't think I have anything like that since I don't experience the heart racing and faintness only unless I'm already in serious pain and/or exhausted and try to stand up or go up stairs. That happens especially if I haven't been getting enough sleep. But overall, I don't even notice my heartbeat. I just get tired/weak/exhausted and in more pain if I do too much.

The "tilt table test" would be out of the question. Too dangerous since any adrenaline causes a LOT of it and that's when I get the really intense suffering. I would end up hospitalized for days, if I didn't end up with a heart attack or a stroke instead. I have such sensitivities that it seems my body reacts 100% more instensly than normal people's do. And won't stop until I just burn out and pass out or fall asleep from exhaustion. This test would not be worth the risk to me.

One thing I do when I'm very tired, is drink Gatorade. Actually sip on it sometimes if I can't drink a lot. It does seem to help. Though those with glucose sensitivities (which I'm glad is one thing I do NOT have) may want to be careful. Gatorade is mostly glucose-sucrose sugars. Be careful that you don't get the one with 'esther of wood rosin'. That doesn't sound good and doesn't taste great either. The Gatorade Rain flavors are what I use. This helps me a lot when I get the flu (I don't get flu shots, since I have a good immune system and rather let my body develop it's own antibodies on it's own).

Generally, the only time I feel faint is if I haven't had the proper amount of rest, not much to eat and am pretty much worn down and exhausted. Wouldn't anyone? LOL! So I don't think POTS is it. Or any thing related. Basically I just suffer much more intensely than normal people do for some reason. But I suffer that bad if I already am starting to suffer from something else.

Curl's idea of taking care of the symptoms before it gets worse is a good one. Though sometimes it doesn't always work because by the time I realize I've got a problem, it's already escallating and sometimes I can't do anything about it as it's too late. Other times, it works and I just lay down and end up sleeping for a couple hours. Depends on what is wrong and how bad.

When I get that dizzy thing is just a feeling of falling mostly. Like I can't stop moving or my brain can't adjust to the change in type of movement. Odd. I need to try and remember to make a journal when I go out of what I go through.

Curl, thank you for Dr. Lapp's name, I found the web site by googling and bookmarked it. I plan to try to get to a doctor very soon and maybe Dr. Lapp's site might be a good resource, or the new doctor might be able to otherwise contact him and get much-needed information to work with.
Avatar universal
Hi Fibrofrog - glad you had a good day overall.  Once again you're describting classic CFS symtpoms with the hypersensitivity to stuff, meds, foods.

Before ruling out the POTS, the symptoms vary widely from person to person and felling like fainting is definitely not a required one.  I found your comment that you were too sensitive to take the test interesting - possibly "telling", it might indicate that one of the dysautonomias is precisely what you have.  The test is miserable and triggers an eposide.  I spent three weeks recovering (I had to have some official concrete testing for insurance coverage ect.).  What I'm saying is that before ruling it out, when you have someone to work with who's knowledgeable, check it out with them...   I've known several people with it who have never described a sensation of their heart racing.  However, they have the fibro fog, muscle weakness, dizziness, and so on.  I've talked with other people for whom that's the telling symptom.   Of course if it doesn't feel right to you, then it doesn't feel right.

I know what you mean about not always catching symptoms early enough.  I've learned to notice incredibly small body sensations and develop automatic adjustments.  I only need to sit down for a few minutes, or stop walking, or just stop reading or thinking and let myself rest for a few minutes.  It's that early on.  It's probably something I did automatically, the way you are so great at blocking out the pain (i.e. adjusting to it) without making yourself frustrated about it.

I get a movement think like you are describing before I fall asleep at night when I've pushed it.  Things are spinning sort of like I'm falling.  It's not one of my major symptoms.  A journal is a fantastic idea.  It might help your doctors understand if they see it in writing.  Sometimes they hear differently when it's in writing.  Or help you develop the words that would clue them in more.

The gatoraid makes perfect sense as a fix.  It increases blood volume, improves electrolytes, and adds sugar.  Many CFs patients test as low in total blood volume (not the regular CBC blood ratio test).  Also for dysautonmias, the standard treatment is to increase fluids, and use ones with electolytes if possible.  My doctor has reports (and pushes) one with much less sugar....the name's escaping me.  Regardless of whether those reasons are accurate for why...cfs patients often feel better with something like gatoraid and especially after an saline IV (sometimes it's perscribed).

i just read your description of symptoms again.  They sound so exactly like the people I know with various dyautonomias.  That you get the symptoms at all of faintness and heartrace at the extremes is pretty good indication that it's a match. I'd hate for you to rule out something useful if some sites don't describe it well.  So, please keep it in the back of your mind.  (I feel like I'm might be being pushy here - so I'll stop, and you know yourself of course.)

Anyway, as we chat it might help either of us, get more clues!
Avatar universal
No. No. No. No.

I will NOT take ANY test that would make me that ill or risk my life. I don't even want to hear about it or anything related. Or anything else that would result in tests that could make me wish I was dead or kill me.

And if some insurance company ever did that to me, I'd have a lawyer on the phone damn quick!

I'm out of here. Life is too short and I have more fun things to do than be in a forum where I'll read such gruesome and insensitive posts.
Avatar universal
Avatar universal
Avatar universal
I have found a great book that will explain everything you're going through and more. It's called Fibromyalgia and Chronic Myofascial Pain Syndrome by Devin Staranyl,M.D. and Mary Ellen Copeland, M.S, M.A. It's helped me alot, and you can find it on Amazon or Barnes and Noble
Avatar universal
I wasn't suggesting you take the test.  There's no reason.  I was suggesting that when you find a good doctor, or find a specialist in dysautonomias and tilt tests, ask them about the symptoms and whether they match yours.  My post wasn't insensitive and I am hurt that you would say that after the time I put in to try and give you some ideas and support.  That's not nice.  

What you describe is classic pots.  You don't have the symptoms "unless very tired."  I don't EVER have those symptoms.  You described having it.  If you don't want to consider it that's your business.  If you want to put down someone for telling you about it - your being hurtful and nasty.  For pete sakes, I can see you improving greatly with some proper care.   The tests don't make you wish you where dead.  You can stop them at anytime, even within a minute of any symptoms starting up.  The adrenaline isn't used most of the time at all.  There are ways to test without a tilt table or any trigger of symptoms.  I didn't get into that because I figured it was just the beginning of considering it, and I don't have those references easily handy.  You attacked me for NO reason.  

I didn't do it for insurance.  I generalized my comment on me, because I didn't want to include personal information on a public forum.  I didn't know if would be the trigger and increase sensitivity for a few weeks.  And it was no big deal in the long run - but it's been a big deal to be able to identify it, work with it, and go from physically incapacitated to pretty functional.  I had the feeling of wanting to die or accurately that my body had the feeling.  I don't ever get it now.  I wanted that for you too.

I can't tell you how uncomfortable I am with your attitude toward me for my thoughts - they weren't commands.  Geez - suggesting keeping something in the BACK of your mind is hardly a big deal.  
Avatar universal
I think that's the book I mentioned to someone in an earlier post, but couldn't remember the name of!  Thanks for posting it!  If it's the same one - that lists symptom with explanation, one after another, it was excellent.  I found a few of mine in there that I just couldn't figure out.
Avatar universal
I'm going to put this a much shorter way.  You have no right to critize me because you don't like the test that goes along with a diagnosis I brought to your awareness.  

You were ruling it out because of misinterpretation of it from websites, which i was trying to clarify.  You are also unwilling to consider it because of the stellar logic that the test to see if will trigger symptoms like yours...will trigger your symptoms.  Your're making up realities of why I took the test myself doesn't help either.  I don't usually suggest taking the test now that I know how it feels and I didn't in your case either.  Instead I'd suggest talking to a doctor, rather than self-diagnosising off the internet.

I wish you success.
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