This is very hard to explain as each one is different.
A flare can vary in duration, intensity, symptoms, triggers
A flare can last for a few hours, a few days, a few weeks, or even months.. Possibly years..
A flare can simply be a temporary exacerbation of symptoms that can be treated reasonably easily through medication and rest. A flare however can also be a debilitating excruciating exhausting with a skyrocketing increase in symptoms.
A flare could be pain, fatigue, insomnia, significant cognitive impairment, muscle spasms or charlie horses, IBS/IBD inflammation, exacerbation of sensitivities to food, smells, touch, less severe symptoms include body temperatures fluctuations, nausea, RLS, TMJ, dizziness/lightheadedness, costochondritis, headaches or migraines, numbness & paraesthesia
I am not including depression in this list despite the fact that many will think that yes this is part of a flare. For some it may be but for me my depression is not related to the fibromyalgia so much but the limitations of the flare in physical activity, mental stimulation and socialization.
With all the symptoms listed above a pain flare is different, day by day, hour by hour, trigger dependent and with various possible causes, intensity.
For example, one person might have issues with increased migraines and fatigue.. Another might have a flare in IBS/IBD symptoms, or muscular pain or cognitive issues. No 2 are ever alike.
With all the different medical conditions that I have, several of them are chronic pain conditions. Now you must think, because there are so many issues, that the pain would just bleed through, but it doesn’t. Each pain for each condition feels uniquely different from the others. Being able to differentiate between different types of pain and their causes is advantageous in that since I know what is causing the pain I know which treatment would work better
Fibromyalgia Pain – tTis is more muscular and joint pain. I have tropical rubs, muscle relaxation and pain medications to help deal with this
OsteoArthritis Pain – This pain is exclusively in my lower back as I have osteoarthritis in the entire lumbar and tailbone area of my back. Topicals will help this to a point, but anti-inflammatories tend to be the most productive treatment
Myofacial Pain Syndrome Pain- This one just sucks because it is hard to tell between what is the my official pain syndrome and what is just stress. And sometimes they’re both. Treatment for this type of pain is the nerve and trigger point injections that I get from my pain management clinic. Massage therapy also helps me with this .
Endometriosis Pain- Fortunately while I don’t experience this as much as I used to I still get shots from this . Currently I will feel the occasional shot down from my ovary to my leg. Other times is when Demetrio tissue adheres to the bowel and then the bowel moves as stool processes through causing the bowel structure to shift, causing years in the Endo tissue, causing pain. This is typically dealt with using anti-inflammatories and pain medications.
IBS Pain- initially because the endometriosis was located on my bowel I did not have problems differentiating initially between IBS pain and endometrial pain. Having dealt with this since my teen years I have been able to determine the difference between the two. And do a sharp whereas IBS is more crampy. The easiest way to resolve this is to have the bowel movement.
Arthritis Pain – I also have the normal form of arthritis in both my hands and in my knees. Anti-inflammatories typically help but support braces are also advantageous for both my wrists and my knees
Kidney Stone Pain- the first time I dealt with this pain it knocked me off my feet. From what I’ve read this is one of the most painful forms of pain that the human body experiences. It took three lithotripsies and several other false starts to get these treated. Drinking lots of fluid did help in that it would help float the stones away from the ducks so it was not impeding the function of the kidney.
I have experienced other forms of pain such as a pinched nerve, pulled or torn muscle, spring, bone break, concussions, etc. These forms of pain fortunately are short-term, typically less than 3 months unlike the chronic conditions above.
Over the years I’ve dealt with a lot of different kinds of pain. I’ve had broken bones, pulled muscles, sprained ankles, torn muscles, chronic Charlie Horses/nasty muscle spasms, concussions & even thrown out my back. Each of those feels different from each other, right? Before a Fibro diagnosis, they are dealt with appropriately.
I’ve also dealt with pain due to endometriosis, irritable bowel syndrome, CFS/ME, fibromyalgia, osteoarthritis, regular arthritis, kidney stones, gallstones… And each of those feels different from each other. I can even differentiate between IBS pain & Endo on my bowel pain.
I’ve dealth with all sorts of different types of pain..
But once you hit that one diagnosis, many doctors don’t bother looking past it. This happens way to often for those of us with Fibromyalgia & even ME/CFS.. When you go to the ER or even just to your family doctor with a new pain issue, many of us are spoken down to and even dismissed saying the pain is due to fibromyalgia. The one time I’ve have a pain that I said wasn’t fibromyalgia but it actually was happened when I had chest pain. It was costochondritis & while this is a Fibro issue, it’s understandable the first time or three that I freak out & head to the ER thinking heart attack.
Now, I’m lucky. I have had a great support system & have over recent years learned to be my own advocate without being a bitch about it.. I have not experienced this problem much with fibromyalgia. I did however experience this at the beginning of my medical journey in my 20s.
I kept having abdominal pain.. After being put off by my GP once or twice, him thinking it was just gas, he sent me after a 4 month wait, to a gynecologist. She did an exam & sent me back to my GP telling him to send me to a GI doc.
So, GP sends me to a gastroenterologist.. After a 6 month wait there, I was scheduled for a colonoscopy (that was fun..not) and was determined to have Irritable Bowel Syndrome.. After getting it settled down by diet & medication, I was still having abdominal pain. GI tells my GP to send me back to the gynecologist.
I had another 2 month wait to she her agai,n over a year after my previous appointment. She tells me, “you don’t have endometriosis”, because my symptoms were atypical, despite still being consistent with Endo. She did agree to do an investigative laparoscope to shut me up & “just in case” she was wrong. She Was Wrong. I had Stage 3 Endo across my abdomen. So the investigative laparoscoped turned into a treatment laparoscope where she tried to in size and burn off any visual endometriosis cells. She has to go back in 6 months later to get the remaining endometrial cells higher in my abdomen that she missed the first time because she “didn’t have long my enough tools”.
So I learned early on to be an advocate for myself, with support from friends & family. If you feel your are being dismissed, say so. Cuz yes, your pain *could’ be from your fibromyalgia, but it ‘could’ also be something else.
So, my doctor’s know that if something’s not right, I will stand up and say so, not taking no for an answer.
Those who know me personally, would probably say to me, yeah, but what about that issue with your shoulder? To be honest, that is still a work in progress. Now that physio is back available, I’ll be asking my GP for a prescription & get that set up. Yes, it started in March, and I’m just getting to treatment now. But remember, alot of things closed here in Canada for quite awhile, so yeah, it’s taking a little longer to get things dealt with in this issue.
What does this look like? Honestly, it’s not that different. Most people who have chronic illnesses only go out when they are having good day.. In remission, you are having primarily good days.. So, the big change is that people will see more of that person. Instead of once every 2-3 weeks, depending on your relationship, you might see them 2-3 times in a week!
What does it look like for me? It looks like better connections with family & friends as I can see and interact with them more.. It looks like consistent cubs meetings with a higher participation. It looks like I can do something from before but without the bad consequences like I was able to go for a hike down by the lake today and tomorrow I may be a little sore, instead of a nice big crash that used to happen.
Remission means a temporary relief from pain, fatigue & other dymptoms. I can do so much more than I could!
Do I still crash? Absolutely.. Does it happen as much right now? No. Is it as bad, as painful, right now? No, actually the pain is better right now. Does it last as long? Not usually.
So, I’m sure you are wondering, can I return to ‘normal’ life? No.. I’m still having off days. I still can & do overdo it. I crashed out one day last week for no particular reason. Today I am toast cuz of the weather shift earlier in the week. I having been slowly adding more ‘normal’ things to my life including friendships, romantic relationships, scouting commitments, family interactions, increased activity including exercise.
Am I still in pain? Am I symptomatic? Sbsolutely. That one reason I know I’m not ‘cured’ I still have pain evety single day. But lately it’s only a 2 or 3 on the pain scale these days.. I still am exhausted, but I don’t necessarily need the 12+ hours of sleep to recover from a regular day. IBS? Oh yeah., Fibro Fog? Definately.. Sensitivities? Sure, some less intense.. Morning stiffness? Oh yeah, but it’s usually less..
Why am I in remission? What did I do? I can’t say for sure, but the timing of the end of a toxic even abusive long-term relationship may have something to do with it. I returned home, slowly rebuilt relationships, re-establishing connections, increased fitness, weight loss, changed my meds & got off several, decreased dosages of others.. Lots of good changes, all of which may have contributed to my current status.
This is a long read, but if you haven’t ever seen/read it, then it is most def worth the time. Because of it’s length, I’ve made it 2 posts. Fell free to use it for your own use if you so desire.
About Fibromyalgia
My Need for Massage Therapy– If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.
My Good Days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
My Uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else. (Keep an eye out for the reposting of the topic “My Fibro is Not Her Fibro”)
My Weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My body’s metabolism is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.
My Stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My Depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My Sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, textures, odors, food, etc.. FMS has been described as the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.
My Intolerance – I can’t stand heat, either. Or humidity. If I am a man, I may sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
My Clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My Forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My Fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My Pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real.
For my fibromyalgia, I currently take the following Medications/supplements
Multi-vitamin – Naturapathy Dr does not recommend Centrum or most pharmacy brand multi’s
Calcium & Magnesium with vitamin D – Calcium cuz Women with Endo are more susceptible to Osteoporosis. Mg & D to help absorb the Calcium. The Magnesium also to help with muscle spasms & charlie horses. I have found that it has helped.
Fish oils – Generic fish oils, minimum 1000mg a day .. Well, I try to. Naturapathy Dr recommended 1000mg-3000mg daily of the EPA+DHA to help with mental acuity. I’m still waiting for the fog to lift, but I’m not usually getting enough to impact because I fog up & forget.. Lovely catch 22 there.
B complex to help with stress and ensure that I get enough B’s. No, I don’t take a stress formula. Just a normal B complex.. either 50mg or 100mg
Codeine Contin for maintenance pain.
Tylenol #3 for breakthrough pain
Oxycodone for severe breakthrough pain
Flexeril (Cyclobenzaprine) as a muscle relaxer. I find it better than anything OTC..
Probiotics to help regulate my digestive track – it works, ‘cept when I have an IBS flare or food sensitivity
NSAID, but it’s for my Endometriosis, so I don’t really know if it does impact my FMS or not.
For my fibromyalgia, I currently participate in the following exercise:
Aqua-fit, really carefully – I’m just getting back into exercise, so I am trying to get to the gentle classes. My local YMCA gym has a class or arthritics and for osteoporosis. Aqua-fit is a good choice because of the buoyancy of the water, it doesn’t impact my knees, and it’s a gentle cardio
Seriously, right now that’s it. I need access to a hot tub to do further exercise to keep my body warm.
For my fibromyalgia, I intend to return to the following exercises:
Yoga with the hot tub – Yoga provides gentle stretching while working on core strength and balance. The hot tub helps to keep muscles relaxed afterward.
Keeping up with Aqua-fit – see above 🙂
Walking the track to music with the hot tub – I got into walking when my nieces were born, walking with my sister. After I joined the Y and my nephew was born, I would take him in his stroller to walk him around the track. He’s too old now, but I have found it enjoyable with my MP3 player (or CD player back then). I sometimes dance a little bit and my pace changes with the music I’m listening to. It’s hard to overexert myself. 🙂 The hot tub helps to keep muscles relaxed afterward.
A benefit from the exercise is that I tend to be tired out afterward and relaxed. This makes evening workouts ideal in that I go home, go straight to bed and will sleep well, with a decent amount of healing rest. This improves me, physically, emotionally and mentally for the next day.
For my fibromyalgia. my spiritual side is limited. I don’t go to church often, however I do find solace in my home church’s sanctuary. I’ve moved away from my home church and have yet to try out the sanctuary here. I also find the same ‘state of grace’ from music, especially my churchy music 🙂
For my fibromyalgia, because of my physical limitation, I am limited socially. Most of my social interaction is via the internet on Twitter, Facebook, Email, etc.. The alternative to that in real life is with my SO and his friends. Most of my friends no longer talk to me, or are too far away for more than email. The classes as the Y present a new socialization source, which I hope to be helpful. With the improvement of my health I would like to return to scouting in some sort of part-time or limited capacity.
For my fibromyalgia and my cognitive abilities, I am starting this blog. It will help keep me thinking and requires research. It also provides a creative outlet. I also enjoy doing word searches and have, on recommendation on my therapist, started to colour and have other crafts options available to me.
For my fibromyalgia and an emotional aspect, I have a councilor and have been placed on anti-depressants. While my time with her is limited I do find that I feel better after I speak with her. Additionally I have the support with my SO. While sometimes he can not understand and becomes frustrated, I know he only has best intentions where I am concerned.
How do I cope? Not well. Other than the limited exercise mentioned above, the odd screaming match and the rarer still church visit, I have no real outlets.. Which sucks. Before I got sick, my outlets for frustration and anger and stress were physical. With the fibro, I have lost that. Any suggestions are welcome 🙂
My name is Kelli.. But I am also known online as Neon Rose and it’s variations (I answer to the name Neon, IRL).. I am also known, in scouting circles as Koolaid – yes, as in the drink (long story, I’ll tell ya some time)
This blog is about my life, my medical issues and any information I can share thereof.. I have been diagnosed with Fibromyalgia, Endometriosis, Allergies, Sensitivities, Asthma, Irritable Bowel Syndrome (IBS), Depression, Chronic Fatigue Syndrome (CFS/ME), Hypo active Thyroid, Restless Legg Syndrome (RLS), Osteoarthritis (OA) and a host of other issues that are part and partial to go with the above mentioned. The focus here is going to be mainly on Fibromyalgia (hence the title), but will also include fibro-related issues and Endometriosis.
Why, you ask, primarily on Fibromyalgia. Well, cuz Fibro is the most significant issue at the moment.. My endo is under control, as is my asthma, RLS, allergies, etc.. Also, Fibromyalgia is also the least understood, most misdiagnosed and under treated condition that I have. If I can just help one other person, then, I’ll feel awesome cuz I have helped someone. (Why do I suddenly have a girl guide song in my head? *shrug*).
What aspects am I gonna cover? Everything I can. If you look at my categories you will see I plan to cover many areas of traditional and non-traditional medicines including Eastern medical philosophies, faith, as well as non-medical areas of life. I also plan to cover support (financial & emotional) and daily living and coping.
If you have questions, please feel free to ask.I will do my best to answer.
Note that all my content does not necessarily belong to me, however sources are always listed and author if available, if it is not original content. Please see disclaimer post for copyright information.
Fibromyalgia 
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