Fibro causing stroke like symptoms / panic attacks

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lightness1
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Date Joined Sep 2011
Total Posts : 3
   Posted 9/6/2011 12:07 AM (GMT -6)   
Hello I am new to this forum so I hope I can both contribute and learn more. I was diagnosed with Fibromyalgia about 4 years ago after experiencing a sudden 'black out' with a seizure and loss of body control which I thought may have been a stroke. After going to the ER and rehabilitation clinics I was told that I experienced a panic attack coupled with Fibromyalgia. These attacks still happen randomly and regularly to this day and after numerous scans, tests and hospital admissions I have not been able to get a clear insight into exactly what they are.

More often than not these 'panic attacks' leave me unable to move and in so much pain that half of my body shuts down. My face droops on the side that is effected and it can take 2 or more weeks of rest for my body to go back to 'normal'. Like many of you I live with constant unexplainable body pain which on better days is tolerable, however I have no explanation for these episodes of stroke like 'panic attacks' that take so long to recover from and are very scary.

I am asking if anyone else experiences anything similar to this in the hope that we can find answers and a treatment plan.

Thank you,
Lightness1

applevenus
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Date Joined Aug 2011
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   Posted 9/6/2011 8:32 AM (GMT -6)   
Lightness1 Happy to have you here, but sorry about what you are going through. I don't think you should be very quick to accept this diagnosis. Have you gotten a 2nd or even 3rd opinion? I think it would be worthwhile. I would not be satisfied with their explanation. Do you remember what your mindset is right before you've had these attacks? Were you nervous about anything? Unless I freaked out before each and every attack, I would not allow Fibromyalgia to be the excuse for it. There is too much at risk. Have you seen a neurologist?
46F, Fibromyalgia, Vitamin D deficiency, allergies/chemical sensitivities, possible Chronic Fatigue & maybe some IBS (only God knows what else is going on!)
http://fibromyalgiajournal.blogspot.com/

applevenus
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Date Joined Aug 2011
Total Posts : 934
   Posted 9/6/2011 8:38 AM (GMT -6)   
Please see this video youtu.be/NGwF7G54tdc

Sherrine
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Date Joined Apr 2005
Total Posts : 14653
   Posted 9/6/2011 11:58 AM (GMT -6)   
Hi, Lightness, and welcome!  I'm glad you found us and joined in.  No.  This doesn't sound like fibro at all.  You might be having TIA's (mini strokes) or Bell's Palsy.  I've never heard of this before with fibro.  I'm not a doctor but I sure would search out a good neurologist.  This isn't normal for fibro.   
 
Be sure to check out Fibro 101...the first thread on the forum.  There are links to good info about fibo and you will learn a lot there.  Good links you need to check out are called Symptoms and also A Thorough Explanation of Fibromyalgia.  There is another link called What Else Could It Be.  You will not see any illness that causes black outs or face drooping.
 
Please be reevaluated.  Also, let us know what you find out because we really do care about you.
 
I'm looking forward to getting to know you better.  Don't hesitate to ask questions becaue we are here to help you.  Hope to hear more from you soon.
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

ak angel
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Date Joined Apr 2011
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   Posted 9/6/2011 2:19 PM (GMT -6)   
Listen to Sherri, I know I would get another evaluation by a specialist. ER is the worse place to get diagnosed. Last year I suffered something similar. I had a small stroke. My speech was off and cognitive thinking was impaired. I also found out that I was having small seizures I really didn't catch before the granmal seizures. I would like to know what was going on before the symptoms appeared? What concerns me is the face drooping. Usually that a sign of bell's palsy or TIA. I did find out what caused mine. The mini stroke was caused by my blood being to thick. I have a abnormal clotting factor that causes frequent bloood clots. I am on blood thinners the rest of my life. The seizures were caused by my medications. Please go see a specialist like a neurologist soon.

lightness1
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Date Joined Sep 2011
Total Posts : 3
   Posted 9/6/2011 5:59 PM (GMT -6)   
Thank you every for taking the time to reply and for your concern, I am very grateful. I will try and give some more information out to see if that paints a clearer picture.

I am 33 year old female from Australia. My initial diagnosis was from a Rheumatoid Arthritis specialist telling me that it is Fibromyalgia 4 years ago. The reason for this is because I do experience constant whole body pain. However I agree that it does not explain the fits. I feel like it is the intense pain that is causing the attacks, almost like it is looking for some release. No medication eases the pain and when it hits a certain point I cannot talk and my face droops, goes numb and my body shakes. Usually I have learned that resting will ease the pain and I will recover to the point where I can walk around again and my face will go back to normal. These attacks happen almost once a day, sometimes in my sleep and always leave me feeling worse than before the attack in terms of pain and 'foggyness'.

While these are a daily occurance I have experienced more severe forms that leave me with paralysis like feeling always affecting the right hand side of my body. My last severe attack was in December last year where I was admitted to the ER and had all the tests re-done with the same clear results. I was admitted into a rehabilitation clinic for two months before moving to in-home rehab for 6 weeks and then community appointment rehab which is finishing next week. The reasons for the rehab was because I was unable to walk, my fist was constantly clinched and my body would not respond to my thoughts for movement. The doctors had no explanation for these events and put it down to my bodies response to 'pain' caused by fibromyalgia.

This diagnosis been echoed by my GP's and other specialists (including neurologists) have gone along with this because they can't explain it. I have seen and tried to obtain answers many times over the years, usually after a severe attack. I have had doctors tell me that it is a 'medical mystery' and they can not explain what is happening. This is because all tests I have done (CAT, EEG, X ray, Blood Tests) have come back clear on numerous occasions.

Stroke has been ruled out, TIA ruled out as well as Bell's Palsy on more than one occasion. (Thank you for thinking of other causes)

Other -
+ I do have high blood pressure which I am taking medication for. (this is the only medication I am taking)
+ I have osteoperosis however the pain is not typical for osteoperosis patients as I have been told.
+ The only things I take are calcium/vit D tablets and Kaprex.

I fractured my Sternum along with a hairline fracture in my T5 vertabra in a car accident 8 years ago, however the pain and attacks have only been happening for the last 4 years. All scans haven't shown anything else abnormal.




Ak Angel & applevenus - I would like to know what was going on before the symptoms appeared?
I feel there is no concious warning. I could be watching TV, in the middle of a conversation, in my sleep and whether I am feeling good or bad. I don't feel any sense of panic leading up.

I am worried about the blood clotting due to my HBP, what sort of test confirms this ?


Thank you again everyone, if anything comes to mind please don't hesitate to share. Any information is better than none. I have followed the Fibro info links and there are many things that I can relate to but I will read more and be in touch if anything else sticks out.

Bless
Lightness1

Post Edited (lightness1) : 9/6/2011 6:13:32 PM (GMT-6)


ak angel
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Date Joined Apr 2011
Total Posts : 2714
   Posted 9/6/2011 11:16 PM (GMT -6)   
I am so sorry that they can't find out what is causing these symptoms. I do know as a retired nurse that anxiety can cause so many problems. I to suffer from anxiety. The clotting problem that I was telling you about is a genetic problem. They test different factors in your blood. Apparently I have a gene that is abnormal, that causes me to have blood clots. My legs use to hurt so bad after work and then all of sudden I had 3 pulmonary clots over a few years. It sounds like they have tested so much on you. I wish I could help you out. Maybe someone in the forum has some input. Don't give up. I went through many years having my problem until I found that right Dr.

applevenus
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Date Joined Aug 2011
Total Posts : 934
   Posted 9/7/2011 9:34 AM (GMT -6)   
Hmmm...When did you start taking the blood pressure medication you currently take? What was going on around the time you had the first attack, anything you can remember that could have any bearing? Have you ever tried a different blood pressure medication?

Do you ever track what you eat? Just an idea, it might not bring anything, but it wouldn't hurt to keep a record of everything you eat and note/chart the exact times of day when you have the attacks, and maybe a pattern would emerge. If I were you, I'd even track the temperature/weather...anything that could possibly matter.

You just might find a pattern with your menstrual cycle, the weather, and what you eat...might be an iffy pattern. Just going by myself here, I would be going mad with what you are going through...I would have to start some kind of tracking just to feel that I am working on a solution even if everybody else has thrown up their hands. That's just unacceptable to me.
46F, Fibromyalgia, Vitamin D deficiency, allergies/chemical sensitivities, possible Chronic Fatigue & maybe some IBS (only God knows what else is going on!)
http://fibromyalgiajournal.blogspot.com/

applevenus
Veteran Member


Date Joined Aug 2011
Total Posts : 934
   Posted 9/7/2011 9:36 AM (GMT -6)   
Oh just a thought...you might want to ask the doctors you have -- if they had a car that suddenly stalled when they were driving it on the highway, would they just accept that that is just a mystery of that car and keep driving it, or would they work to find a solution to why the car was stalling?!?
46F, Fibromyalgia, Vitamin D deficiency, allergies/chemical sensitivities, possible Chronic Fatigue & maybe some IBS (only God knows what else is going on!)
http://fibromyalgiajournal.blogspot.com/

Frankey
Regular Member


Date Joined Nov 2010
Total Posts : 299
   Posted 9/7/2011 9:52 AM (GMT -6)   
Lightness,

I'm sorry to hear what you're going through. My brother had similar problems when he was about 10 years old. He was having neurological problems but no Dr. could figure out what was happening or the cause. It took months, millions of tests and finally he went to the Mayo Clinic in Minnesota. In the end they found out that he had Wilson's Disease. A rare disease that effects the liver. Your body is unable to dispose of copper so it accumulates in your liver, brain and other organs. The disease usually presents itself in infancy and usually is not caught and can often be fatal. It was rare that my brother didn't present symptoms until he was 10. He was a medical mystery, had teams of Drs. all over the world working together on his case and was posted to the internet for opinions. Essentially his nervous system had gone haywire, his blood pressure was dropping so he would pass out but his brain would still be awake. His hands were stuck in a clutched tight position. He had boils on his skin. His body went crazy. Now that he's been on medication it has been controlled. He needs to be closely monitored to ensure his copper levels are always in control, but no one thought to look at a disease like that because the chances were so rare and his symptoms were atypical.

I share the story because I encourage you to go to a hospital that will get to the bottom of your case. I don't know if you have anything like the Mayo clinic in Australia, but that is truly the best place for "medical mysteries".

Good luck and I hope you get answers and the remedy is a quick and easy one.

On a different note, ak angel... do you have Factor VI deficiency by chance? I have Factor XI deficiency, so I have the opposite problem, my clotting factor is only 2% and 100% is ideal. My whole family has this genetic mutation. I was just curious because it sounds like we're on opposite ends of the spectrum.
"Just when the caterpillar thought the world was over, it became a butterfly" - Proverb

applevenus
Veteran Member


Date Joined Aug 2011
Total Posts : 934
   Posted 9/7/2011 10:40 AM (GMT -6)   
Thank the lord for doctors who didn't give up!
46F, Fibromyalgia, Vitamin D deficiency, allergies/chemical sensitivities, possible Chronic Fatigue & maybe some IBS (only God knows what else is going on!)
http://fibromyalgiajournal.blogspot.com/

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 14653
   Posted 9/7/2011 12:02 PM (GMT -6)   
A teaching hospital would be a great place to go.  Here is a link from Fibro 101 that will help you see if you have a teaching hospital near you.
 
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

ak angel
Veteran Member


Date Joined Apr 2011
Total Posts : 2714
   Posted 9/7/2011 3:10 PM (GMT -6)   
Frankey- I forgot what genetic factor problem I have. I need to write it down. My memory is very poor at times. I just know I have to take coumadin the rest of my life. It gets so old checking my blood levels. Next time I get a clot I have to have a filter put in. Hopefully that won't happen. The coumadin made a huge difference in the leg pain. The blood is flowing better.

lightness1
New Member


Date Joined Sep 2011
Total Posts : 3
   Posted 9/7/2011 5:23 PM (GMT -6)   
Hi applevenus I agree, it isn't acceptable and it is putting my life on hold at the moment. I think posting on this forum and getting different opinions is the most positive thing I have done.

I have only been taking the blood pressure medication for 3 months. In terms of diet, I am severely allergic to Soy. I have tried a Paleolithic diet for 6 months and took out wheat and gluten however I need to keep Dairy in for the calcium.

Frankey - I am glad your brother was able to find out what was the cause. I would have never thought that something like that could be due to copper. I will mention Wilson's disease to my GP and see if that line of thought opens any ideas to something similar that could be the cause, maybe another heavy metal or allergy. I actually have most of the syptoms of Wilsons, including easy bruising..


I am working with a qualified doctor that is also a naturopath for a different perspective. I have been to two Hospitals that are on the 'Teaching Hospitals' list but unfortunently they do not share the same enthusiasm for finding out what is going on. I don't think that Australia shares the same inquisitive nature that American teaching hospitals may possess. Here it is more about getting you out of the door because they don't know what is wrong and you are a burden on the system. I would love if a team of professionals could really investigate my case but really lack the financial resources to go down that path as I don't have private health insurance.

What is most interesting for me is that no one else (so far) with Fibromyalgia experiences these 'attacks'. Which leads me to believe that it is something else going on. I have had doctors tell me that it is 'all in my head', and is caused by anxiety and stress. I am not sure how credible this is as the physical results are just so severe it is hard to accept.

My first blackout occured 6 years ago on my Mom's birthday where I was perfectly fine before hand. The blackouts wern't accompanied by pain for another 2 years.

At this stage I think it would be great to get as much feedback as possible as to what 'could' be causing the problems, and then taking these to my GP to get referrals and tests.

Thank you everyone,
Lightness1

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 14653
   Posted 9/8/2011 11:34 PM (GMT -6)   
Lightness, it's not all in  you head.  Anxiety can cause some pretty strong symptoms but I've never heard of paralysis or drooping face or blackouts from them.  I wish I had more suggestions for you.  Have you seen a neurologist?  That would be the best bet for you with thee symptoms.  I'll keep you in my prayers and please let us know what you find out?  We really do care about you.
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

bwfm
Regular Member


Date Joined Apr 2010
Total Posts : 373
   Posted 9/10/2011 10:50 PM (GMT -6)   
Have they done a tilt-table test?

applevenus
Veteran Member


Date Joined Aug 2011
Total Posts : 934
   Posted 9/11/2011 3:10 PM (GMT -6)   
It's very frustrating to me just to hear about, so I can only imagine what it must be like for you. If all I can do is encourage you not to give up, I guess that's something but wish I could do more. Maybe contact the producers of the Doctor Oz show here in the US, maybe your case might be worth exploring on the show, & they'd have connections with top experts. It's a longshot, but if nothing comes of it, you're right back where you are now, so ther's nothing to lose by trying.
46F, Fibromyalgia, Vitamin D deficiency, allergies/chemical sensitivities, possible Chronic Fatigue & maybe some IBS (only God knows what else is going on!)
http://fibromyalgiajournal.blogspot.com/

nsbennett
New Member


Date Joined Mar 2011
Total Posts : 19
   Posted 9/12/2011 6:55 AM (GMT -6)   
I had a seizure last Friday and I came across something called Psychogenic Nonepileptic Seizures.  Google that and see if that sounds like any of your symptoms...

Sydney723
New Member


Date Joined Aug 2013
Total Posts : 1
   Posted 8/26/2013 8:42 AM (GMT -6)   
I am 17. I was diagnosed with fibromyalgia 2  years ago but I started getting some of the symptoms when I was 12.my symptoms started small and have been building up and getting worse. at this point I have just about every known symptom. Earlier this summer I had my first panic attack. It came out of nowhere. after that I would have them every other week and then every week and now almost everyday in varying severities. sometimes it's just panic, dizziness, and chest pain. other times it gets so bad that I can't move or speak. so far it has happened while trying to sleep, when I first wake up, at work, in the car, and while I was at a pool party.
 
The varying symptoms are: fast heart rate, sweating, hot flashes, shortness of breath, hyperventilation, sharp chest pain, heaviness in chest, headaches, and dizziness.
 
My problem is that I am about to go back to school and I am terrified that I will have a panic attack in school. they are so unpredictable that it is more than likely that I will. What so I so if I am in class and I start to have one? Do I run out of the room to the nurses office before it gets bad? Do I just sit there and hope it goes away soon? Should I warn my teachers on the first day of school that it might happen so that they don't freak out if I just get up and run out of the room?

DianeB
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Date Joined May 2013
Total Posts : 784
   Posted 8/26/2013 10:42 AM (GMT -6)   
Sydney723

If you start a new thread, other members might be able to better respond to your post.

You did not state whether you have talked with your family or medical professionals about these panic attacks..
Speaking just as a mom I think someone should either go with you (your family)
or provide some type of report (doctor or other medical professional)
For the school nurse.

You will feel more comfortable &, as a former teacher myself, it is good for school staff to be prepared.. & they will be discreet... one of my students had epilepsy & the school nurse advised me of how to help him when he had a seizure.

I have had a few panic attacks when I was under a great deal of stress
(Family member was dying & I felt so hopeless.. ).. I was able to meditate & breathe deeply & never sought medical advise. Yours are different & I think other members can provide more specific advice,

Bless you sweetie & know that you can be helped.
Diane

Herniated cervical discs & other assorted disc / spine issues, Arthritis,
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis
Fentanyl, oxocodone & muscle relaxers - 1,000 Vit D & multiple daily vit
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