Worst flare up of my life

Hey everyone, I was wondering if anyone could offer me some insight. The other day I experienced the WORST flare up I have ever had with fibromyalgia. My entire back was neck were spasming and I had severe sharp aches all over, especially in my back and ribs. That night it only got worse and I was in so much pain I was vomiting from midnight til the next day around noon. I tried to take my muscle relaxant and some advil for the inflammation but couldn't keep it down long enough. I took a hot, hot bath with Epsom salts which helped a little and spent the rest of the day laying on a heating pad. Does anyone have any insight as to what causes this? I don't know remember anything that would have triggered it, it was completely out of the blue for me. My rheumatologist was of no help, I explained what had happened and he offered me a bleak, "well sometimes these flare ups just happen with fibromyalgia and we don't know why." even though this was so intense my pain was off the wall and I was even sweating and groaning because of it.

Has this happened to anyone else? Is there anyway to better manage a flare up like this? Any advice or insight would be greatly appreciated.

Blessings and prayers

Hi Ahava,

I completely understand what you went through. I had a flare last week that was the worst I've experienced with this diagnosis yet. Literally, it felt like nothing helped. I tried everything that is usually helpful but it wasn't. I'm sorry you experienced this and were in so much pain. I was couch-bound for 2 days and everything hurt, including any type of movement. My husband felt helpless because he couldn't do anything for me and I just cried, moaned in pain and was miserable. I don't have any insight to offer regarding what caused it, because I don't know either. I took a sleeping pill and that knocked me out to the point where I could sleep through a small part of it. That was my only relief, sleep. It felt like my body burned through the sleeping pills more quickly though because of everything that was occurring with the pain. Small naps were my only salvation. It is frustrating that our Rheumatologists can't help at times because honestly, they don't completely understand why or how this occurs in the first place.

One thing I have found very helpful in reducing my stress lately is burning essential oils through a diffuser. I bought one for work and for home. Since I started using it, I haven't had another intense flare like this. I bought it during my flare. My favorite scents are lavender, vanilla and eucalyptus. Have you experienced any intense stress lately or a long period of low-grade stress? I know that can set it off sometimes.

I hope you are feeling better and I'm sending gentle hugs,

Sara

I’m so sorry! After eight years with fibro, I’ve honestly had trouble pinning down causes of my flare ups beyond the obvious reasons.
About two weeks ago, I had my absolute worst flare up, my doc suggested really looking at what I was eating. I know everyone says no gluten, sugars, starches. Certain foods trigger me off at different times.
Right now, I’m not eating out at all,that helps for now.
The sad thing is that there are so many different causes for flare ups that affect different people, that it’s like trying to find a needle in a haystack to figure out yours.
I encourage you to keep a journal of things, like your activity levels, your emotions, the weather, and what you eat and drink, see if a pattern emerges.I hope you see something, I really do!

Thank you for the sweet comments and suggestions. Just to know that I am not alone truly does help! I had never thought about it being diet related but maybe that could be something to look into. Stress has always been a HUGE contributor for my flare ups and discomfort in general. I will look into some options. Thank you, ladies!

Also, I have been interested in trying some essential oils. Where do you recommend purchasing them, Sara?

Today I'm in a horrible flare. I know what it is. A friend brought over some lasagna. I asked her if it had any pork in it and she assures me that it did not. After one piece within an hour I knew that it had pork in it. When my husband called her she reassured him that there was no pork, just ground beef and Italian sausage. Duh!

As far as essential oils: I have found some very helpful. However I know a couple that will bring on a flare up for me. I would recommend trying to find a distributor close by that will give you a few samples at a time until you figure out what is useful and what to stay away from.

Hi Ahava,

I am really sad to hear of your (and others) awful spasms and flares. I haven't had back or neck spasms anywhere like yours but can see how they would be awful, awful and make you vomit.

I have been contemplating starting a thread about how much worse I feel this summer, can barely walk at all. The reason I mention it here is perhaps your spasms might be related to the weather? For instance, it's boiling hot here today with high humidity. Weather that could very easily dehydrate you, which could cause muscle spasms. I don't know if drinking more water would help you or not but I really am curious about how other fibrites are doing this summer.

I hope you can find whatever was the start of your flare. No one should have to suffer pain that intense!

Light hugs,

Petunia

My sincere apologies for not responding sooner. Life has been crazier than usual lately, and I am currently working on my feet all the time again in a high stress job. Definitely not what my body loves, but it pays the bills. I am hoping to find a sit down job very soon, my flare ups are getting exceedingly worse and more frequent. Why? Of course the physical aspects of my job, but the main trigger for me always seems to be stress and or anxiety. That causes such a horrible flare up and I can always feels it starting up in my neck and shoulders, then it quickly progresses to the rest of my body and all I can do is hope I am off from work and able to curl up in a ball until it passes. Seriously getting sick of these flare ups. My rheumatologist is less than helpful unfortunately. He just keeps telling me that flare ups will happen with fibromyalgia (no kidding) and tries to put me on medications we have already tried - and failed. Agh. I'm sorry for everyone who experiences any fibro symptoms, flare ups being probably the worst in my honest opinion. I have barely been able to eat a thing, not even soup broth I am constantly so nauseated from the pain. Nothing seems to help. I will try drinking more water than I normally do and see if that flushes my system out more. I also like the idea about essential oils, I am glad to hear of some really great success stories.

I'm just curious, has anyone ever tried a detox tea before? There is one I am currently looking into and wondering if it might help me retain less water and maybe help with the flare ups. The one I am looking into is all natural ingredients, no sugars. Please let me know if anyone has tried this and what the outcome has been.

Thank you all so much for your continued support, I am so glad there are others who understand.

Love, blessings and prayers <3

Hi there! I was just reading some posts here and I can TOTALLY relate to the pain you are talking about. A couple of months ago I had a really really bad flare. I get a tingling/burning down the back of my neck which spreads across my shoulders and down my back. It just feels so tight and painful that it's hard to breathe (or think of anything else) and there is absolutely NO position that is comfortable. It's as if I've over-worked my back muscles and they just won't relax. I'm so glad to hear someone else with the same experience as fibro causes all kinds of pain. I work full-time and it's absolutely miserable when there is a wicked bad flare. I have lidocaine pain patches, a mild muscle relaxer and a heating pad that I use at work. Of course the relief is minimal at best. I haven't tried herbal remedies or detox teas as I've spent so much money already on meds I can't tolerate. On my worst days after work I'll take a tramadol and soak in an Epsom salt bath. The bath does wonders but the relief lasts only for a very short time. My PCP just FINALLY gave me a few hydrocodone for severe pain, but it was like pulling teeth to get it.

Anyway, I hope you find something that works for your severe flares. Take care!

ShortStack,

sounds like we have a lot in common! I work full time hours and once the flare up kicks in (same experience with tight muscles and burning in my neck, shoulders which progresses down my back), there is no comfortable position and standing up straight is not even an option. I try baths with Epsom salts also but have the same experience, helps a little and then the pain and tightening comes back. I hope you get some relief as well and thank you for sharing!

Blessings and prayers

Today I was released from the hospital. I've been diagnosed for a few years with Fibro and work very much to be as aware as possible to my symptoms and all that jazz. Well, this flare up caught me completely off guard. Suddenly I was shaking uncontrollably. Nothing worked just like you. Then I had seizure like episodes after that while I was in the hospital. They tested and here's the findings. I hope it helps. You're definitely not alone. This disease likes to do things even someone with fibro for years is just now discovering.

Another cool site too: http://www.fms-help.com/signs.htm

Diagnosis:
I have been diagnosed with Pseudo-seizures. These seizures are commonly associated with anxiety and other similar disorders like PTSD, which is why they were examining the possibility of it being that.
In my particular case, the findings indicate it is not due to PTSD or anxiety or any mental type or mood disorder. It is related to the diagnosis of Fibromyalgia.
In fibromyalgia, the widespread pain and multiple other systems and body sections effected are not fully understood at the time. However some of the most recent research actually conducted last year now tells us that many patients with fibromyalgia suffer from a type of pseudo seizure called PNES. PNES is a Psychogenic Non-epileptic Seizure.
This type of seizure occurs generally as a manifestation of psychological stress. These seizures will look identical to a tonic-clonic (also called Myoclonic) seizure with flailing, choking, unresponsiveness, etc. They may also be in the form of what looks like Absence seizures. In theses, a person may appear to be staring off into the distance, and temporary loss of attention and trouble recalling information for some time after it has passed. Short term memory is highly effected.

If a Pseudo-seizure were caused by a stressing event or by something such as anxiety or PTSD, it is classified under Somatoform Disorder PNES.

However, in other forms of PNES, it is found that the event was not actually brought on by a somatoform disorder idealization or lack of coping skills or life events, etc.

These other forms of PNES are brought on by the body's habit to compensate and to endure daily life when one has a chronic illness. These are unconscious non intentional responses of the body's psychological centers to the physical stimulus surround them. Recently confirmed within the last year, these PNES seizures are true seizures however not epileptic seizures. They do not harm the brain or its functions. What occurs can be seen especially in fibromyalgia patients.

New research shows that as a fibromyalgia patient reaches their window of tolerance and is experiencing a flare up of symptoms or sudden onset of symptoms (this occurs when there is no traceable way to notice an upcoming flare up), they can often have PNES Seizures. This happens because the body's fight or flight system is seemingly caught off guard or overloaded. The body due to wide spread pain overload as well as overload of other multiple symptoms that come with fibromyalgia, reacts in a manifestation of PNES.

In all of these patients it will be found that EEG, MRI, CT, Blood work, and all other vital signs are safe if not exceptional. However, they still have seizure episodes classified as PNES seizures.

It is now found that patients with widespread pain without a diagnosis of fibromyalgia are found to have a 75% chance of having PNES seizure events.
It is also found that patients who have been diagnosed with fibromyalgia have a 99% chance of having these events rather often.

Below is the summary of the study that had been completed:

Benbadis and colleagues examined the relationship between chronic pain or fibromyalgia and psychogenic seizures. They designated two groups: (1) patients who had been diagnosed with fibrolyalgia or chronic pain, and (2) patients who had a seizure during their visit, either in the waiting room or in the examining room. Benbadis et al. derived their data from the records of all patients evaluated over 5 years in a single epilepsy clinic for refractory seizures as well as through EEG/video monitoring. In the first group they identified 28 patients with a diagnosis of fibromyalgia and 8 with a diagnosis of chronic pain. After EEG/video monitoring 27 were diagnosed with PNES. In the second group they identified 13 patients who had a “seizure” during their clinic visit. after EEG/video monitoring, 10 were diagnosed with PNES. “These findings suggest that a history of fibromyalgia or chronic pain” and the occurrence of an episode during the visit both have a high predictive value (75% each) and a very high specificity (99%) for an eventual diagnosis of PNES,” said Benbadis. He speculates that the association between chronic pain and PNES may be “because chronic discomfort can cause psychological distress, which may result in PNES.”