Old 10-21-2015, 01:15 PM #1
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Default Please explain to me a flare

I haven't been diagnosed yet, but I do have a referral to a rheumatologist. The down side is I can't be seen until February 1.

I am not entirely sure I have fibromyalgia, and maybe I am in denial. It just seems like from what I read, most everyone has it much worse than I do pain wise. I have burning discomfort in my ankles, shoulders and sometimes my legs. My legs ache as well as my upper back. I also have burning sensations in my lower back on occasion and in my hips.

I don't have extreme fatigue either. So I am just not sure. I guess that is why the neurologist is sending me to a rheumatologist.

I read the boards and general fibromyalgia websites, but can someone please explain to me what flare is? I am confused about a flare because most of you seem to suffer every day.
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Old 10-21-2015, 04:10 PM #2
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Default Re: Please explain to me a flare

I am having a flare right now. Normally my pain is mostly mild. I always have some diffuse pain in my hands and feet and I sometimes get transient pain in my shoulders, neck and back. Yesterday my pain started ramping up due to work related stress. By the end of the day the my hands and feet were more intense, but no where near as bad as new pains in my thighs, back and shoulders. Today I stayed home from work to rest. It will take a while to recover. For there is not really a sharp line between flare and not-flare. It's more of a ramp up to a higher level of pain for a while.

One thing I have noticed about myself is that when the pain is bad, it is really hard for me to remember the times when it's better and vice versa. Keeping a logbook has been really important for me to keep the whole picture in mind.

Another thing I realized after my diagnosis is that I have been compensating for pain and fatigue for a long time without realizing it. In hindsight it is obvious, but at the time I didn't think anything of it.

The general pain you are describing sounds like it could be mild fibromyalgia pain to me. Maybe your healthy lifestyle has helped to keep your symptoms mild.
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Old 10-21-2015, 05:37 PM #3
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Default Re: Please explain to me a flare

Hi darkchocolate,
I have not had so much burning pain all over as it sounds like you do. I usually only feel the burning during a flare. A flare for me is when an old symptom rears its ugly head again. For me, most of my flairs only last 3 - 5 days and things either go back to "normal" or I have another flare but of another old symptom. The longest a flare has lasted for me is a month, I think. I get new symptoms too, probably one every month.

I agree with DK Engineer that keeping a log book/journal is a good idea. I don't always write in mine but try to at least write down the effects of treatment, like when I got that steroid shot. I also think its important to keep notes about your flares. Where is it? How long does it last? How does it feel? What does it looks like (I took pictures of my swollen body parts so the dr would really know what I meant when I said inflamed). Does it change (in color, size, shape) ? How does it interfere with your daily living activities? How does it interfere with work?

Hope this helps some.
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Old 10-21-2015, 06:01 PM #4
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Default Re: Please explain to me a flare

Thank you DK! I appreciate your definition of a flare. The idea/suggestion of a logbook/journal is a great idea. Do you write in your logbook daily? When you do write in it, what kinds of things do you log?

I sure hope your flair is over quickly and you can recover from it. Is your employer understanding? I am not sure how things will go with my job if my condition worsens.
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Old 10-21-2015, 06:21 PM #5
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Default Re: Please explain to me a flare

Cheryl Ann, I appreciate your reply as well. It must have posted while I was replying to DK.

What is a "normal" day like for you?

All the different aspects of fibromyalgia, is so hard for me to wrap my brain around. It definitely doesn't seem black and white with some other diseases.

I am hoping to be able to get a referral to a different rheumatologist who has openings the end of November. I have left a message with the neurologist is referring me.

I just want answers to my symptoms from a doctor. I want to know if this is fibromyalgia or possibly something else. Then I feel like I can move forward and learn to deal with fibromyalgia or get help for whatever is causing me to feel this way.
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Old 10-21-2015, 06:53 PM #6
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Default Re: Please explain to me a flare

DK and Cheryl Ann, did either of you test positive for the tender points? Unless I am pushing on those spots wrong, I am not tender.

I have read where some doctors go by symptoms and the tender point test isn't always used.
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Old 10-21-2015, 08:50 PM #7
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Default Re: Please explain to me a flare

My doctors never did the tender point test on me. Like you, I was curious and looked it up. I had to probe around a little to find them. It's kind of weird, you have to be within about a quarter inch of the right spot. That said some people have fibromyalgia but don't have tender points.

I started out just keeping a free form journal. As I started seeing patterns and learned more I made a little form in Evernote to help me be consistent. I usually have my phone with me so I can log things as they happen. These are the things I try to track every day:
  • Monthly cycle
  • Estimate of the percentage of the day my pain was above mild
  • Sensitivity to touch (mainly in my hands)
  • Fatigue
  • Dopiness
  • Anxiety
  • IBS symptoms
  • Exercise Intolerance
  • Sleep (bedtime, waking time, hours, quality)
  • Medications and suppliments
  • Food
  • Exercise
  • Relaxation activities (meditation, warm baths, hobbies etc)
  • Stressors (this is not the feeling of anxiety, it is an external cause of stress)
  • Exertion (different from exercise, this is when I push myself to get something done)
  • Details about my pain (greatest pain, least pain, quality of pain, location of pain)
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Old 10-21-2015, 09:43 PM #8
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Default Re: Please explain to me a flare

DK, You are very organized and have taken your journal entries to a whole other level. I am going to print that off and try to fill that info in each time I journal.

My niece was diagnosed with her first autoimmune disease 18 years ago. She suggested that a medication/allergies/ and supplements lists be kept as well.
Naming the date of diagnosis for each autoimmune disease
Name of meds
date started meds
dosage of meds
and who prescribed the meds

DK or anyone else: Can you think of other information that would be helpful to add to a list of medications?
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Old 10-21-2015, 10:02 PM #9
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Default Re: Please explain to me a flare

Dark Chocolate,
I could feel a lot of the tender points. If I remember correctly, I started out with 11 out of the 18. So the dr used those plus what I told him my symptoms were and the fact that I have UC. My GP told me, "Well, if you have UC it's not unusual to develop other types of autoimmune diseases." I have to do one more test says my rheumy, then perhaps I'll know what this new disease is causing the extreme swelling.

I can understand wanting answers! I keep thinking that if I just know what it is, then I can name it and deal with it instead of having this mysterious, destructive, harmful disease. I try not to think of it bc it causes stress and I'm not a doctor so I can't diagnose it. When I do ponder it, I think of all sorts of negative things. I just have to believe that He is always there to lean on and that there is a purpose.

Last edited by Cheryl Ann : 10-21-2015 at 10:03 PM Reason: wrong name
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Old 10-22-2015, 06:33 AM #10
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Default Re: Please explain to me a flare

Quote:
Originally Posted by Cheryl Ann View Post
DK, You are very organized and have taken your journal entries to a whole other level. I am going to print that off and try to fill that info in each time I journal.

My niece was diagnosed with her first autoimmune disease 18 years ago. She suggested that a medication/allergies/ and supplements lists be kept as well.
Naming the date of diagnosis for each autoimmune disease
Name of meds
date started meds
dosage of meds
and who prescribed the meds

DK or anyone else: Can you think of other information that would be helpful to add to a list of medications?
Maybe the date you started noticing any side effects
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Old 10-22-2015, 06:41 AM #11
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Default Re: Please explain to me a flare

DK, thank you for your journal topics. I really need to start one so I can look back and see if I see any patterns. Or just for a reference in case I forget and need to look back.

If you went back to work today, I hope you have a much better day.
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Old 10-22-2015, 08:46 AM #12
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Default Re: Please explain to me a flare

I think a flare is different for everyone. For me, I become really tired and feel like I'm getting the flu. I can't move much without being in extreme pain and it's usually stress induced.
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Old 10-22-2015, 11:14 AM #13
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Default Re: Please explain to me a flare

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I think a flare is different for everyone. For me, I become really tired and feel like I'm getting the flu. I can't move much without being in extreme pain and it's usually stress induced.
When you were diagnosed with fibromyalgia (or first noticing symptoms) did you have extreme pain or has it increased in time?

Thank you for telling me what a flare is like for you. How often do you think you have a flare?
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Old 10-22-2015, 01:16 PM #14
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Default Re: Please explain to me a flare

I am not sure if this is a general question or for someone specific darkchocolate?

I had quite bad pain when i was diagnosed that gradually spread. When i could control the stress i felt and stopped acting like a healthy person....walk for hours housework for hours shopping for hours etc and learnt to pace and live a quieter life it all became more manageable pain and i didn't take painkillers as i preferred to know my own successes and understand my limitations.

I have to be honest and say that the pain and where i have it has changed over 7 years but i have been dealing with a lot of personal stress and anxiety and i can tell that has been the root cause of my fibro's progression.

Please take care of your health...if yours is not too bad it could stay like that with the right lifestyle.
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Old 10-22-2015, 04:00 PM #15
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Default Re: Please explain to me a flare

willow, it is a general question. I appreciate any answers I get because it seems everyone's flares vary just as their general fibromyalgia symptoms.

I will keep in mind the quieter and slowed down life style. I really don't stay that busy, unlike some who lead very busy lives. I work at school so I work full time during the week but I have a lot of time off as well. I may do a few errands after work but I usually come home and relax for a little while, then start supper and clean up the kitchen, wash a load of clothes, etc. Our daughters are grown, and in general we lead quiet lives. We aren't ones to get out and go a lot at night or on the weekends. On the other hand, stress would probably be the thing I would have the hardest time with. My husband, daughters and family are great. My stress would come from work. I get anxious now because I don't have a diagnosis and about how I am going to be able to do my job. I would love a transfer but that can't happen right now. Maybe the next school year there will be a position open.

I eat healthy, I no longer exercise like I used to though. Before I started having problems with my ankles (first symptom) I was on my treadmill daily for over 14 years. I need to get back on and really take it down a few notches. I averaged 4.3 miles per hour. Maybe I need to walk slower, yet I am still moving and using my legs.
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