Please explain to me a flare

[DK_engineer]

Thanks for the good wishes, I did go back to work today. I just got home and am very tired. Pain is still higher than on a good day but I am functional

 

[LemonMoon]

hello

My flares are really bad these days. I feel like i have the flu, except i dont. i ache and get a burning sensation all over and I get a bad headache and i am really weak, sometimes nauseated and cant eat much either. sometimes light and sound irritate me, so i have to just lay in the dark.
I just put in a load of laundry, which took me a few days just to feel well enough just to do that! I do not work or do much these days because i usually cant. .
It's pretty scary for me, but i just rest and ride it out. I cant imagine this getting any worse than it is now.

I was diagnosed just recently with it, even though i had symptoms but didnt know what was wrong with me.

I was diagnosed with chronic fatigue about 18 years ago, and it all got better over time, but now it seems like its all back again. these days, i just wish i could get out and walk and be able to get around better. i am looking into some home health care that they offer up here. for the low income seniors. i dont know if i am bad enough, but i sure could use some help these days.

 

[diamond]

Hi darkchicolate...if it helps at all i could never have done any of that once i had full blown fibro...i mean this in a positive way for you. It would have been totally impossible for me to go on a treadmill or even run. I was restricted to about an hour of gentle walking before having to rest as my whole legs/ feet would just tire and start to seize up.


I was told i had all sorts a frozen shoulder and chondoma patella in my knees from my days as an athlete. Both these diagnosis were wrong.

After lifting my arms over my head about 6 times during physiotherapy and about 6/8 leg raises for my knees i totally seized up the next day and couldn't hardly weight bear on my legs to walk or barely open a door and the physiotherapist refused to treat me as it didn't make any sense to her.

It was fibromyalgia setting in suddenly big time.

I say this so that perhaps you can still feel positive that you can do a lot not to scare you as most people i have met with fibro don't react to exercise like me.

You are still doing a lot after a days work. Is there anyway you could get the family on board to help more at home, I know this is so unnatural for a woman who is used to taking care of all the chores.

Either that or could you reduce your hours at work. IT might be better to make changes now especially if worrying about work causes you stress as long term your health and quality of life will benefit.

I know its not always possible but even money is no good if you are not well enough to enjoy having it.

Lots to think about......take care.

 

[diamond]

Dear LemonMoon...so sorry you are so poorly....you sound identical to me...my hands hurt too much to type anymore today but i would love to communicate with you some time.

i had chronic fatigue on and off about 25 years ago but it got a lot better then fibro 7/8 years ago and i could still do quite a lot ....now like you hard to do anything pain/weakness migraine nausea just unwell and worn out.

TAKE CARE

 

[darkchocolate]

LemonMoon, I am so sorry you feel so bad. How often do you have flares? I sure hope you can get the help you need. I truly hope until the mean time you have family or friends who can help out. Even though you feel so bad, you took the time to respond and I thank you for that.

I never realized how bad this disease is until I started reading fibromyalgia boards during my research after the neurologist mentioned it to me. Back in January the doctor thought I might have MS, that scared me to death. The more I read personal stories of patients with fibromyalgia, I think both diseases are about as equally bad.

willow, again how can I thank you for reaching out and sharing despite you feeling bad. That why I just can't understand how I could have fibromyalgia at times, then I realize this could just be the beginning and I am in a milder stage. I get anxious for answers, then from what I read anxiety and stress aren't good (for anyone really).

I have an appointment with a rheumatologist November 19th with a doctor that doesn't treat fibromyalgia. I figure I can go for a consult and that is one step closer to a diagnosis with fibromyalgia or something else. I still have my appointment on Feb. 1 with a rheumatologist who does treat fibromyalgia. I just need to keep telling myself patience and regardless, I have to learn do adapt to whatever is causing me to feel this way. I just need to take one day at a time.

Yes, my family would do anything I ask, they are great. I can't reduce my hours at work, at least I don't see them letting me do that . I will wait until I have a definite diagnosis before crossing that bridge.

 

[Cheryl Ann]

Maybe the date you started noticing any side effects

Thanks for the good idea DC. I recently began doing this both in writing and with photo documentation, if there is anything to take a pic of.

 

[DK_engineer]

Darkchocolate, remember anxiety can be a symptom as well as a trigger; same thing with lack of sleep. That's one reason why it is so important to take care of yourself - those two symptoms can be self reinforcing.

 

[LemonMoon]

hi Chocolate and willow and all,
thank you for your kind words....that is so nice and it means a lot to me. how often do i have these flares? i dont know. seems like all the time these days. but in reality it is about once every 6 weeks or so. sometimes more often and sometimes not. i never know. as soon as i can feel somewhat better, i usually force myself to get up and out to catch up on shopping and stuff that i have to do. sometimes im still half sick, and i go and do anyway.
today, i have been sleeping most all day but i get on the internet to try and feel kinda normal for a while.
I'm really struggling to feel better right now and it just sucks. everything hurts.

I have no relatives except my son and hes sick with M.S. He is much sicker than i am. he is in a wheelchair now and has 2 caregivers now. i would say M.S. is much, much worse really devastating. i have never seen anyone suffer so much.

At least i still have my moments where i can get outside and walk my dog a bit, and drive to the store. and do my laundry lol!
I dont know if my symptoms are just getting worse or what, but im afraid of how bad this might get at this point.

the medical care around here is not very good, i have medicare and maybe that is why. they wouldnt give me a pain pill if my life depended on it. i just take ibuprofin when it gets bad. i have tried other meds but i have all these side effects that keep me from being able to use them. i go to a clinic and maybe that is why too. i think they have a lot of drug addict types that go there. i am wondering if i should look for another doctor elsewhere.
i also have severe lower back problems and had terrible pain with that too. i have had injections into my sacroiliac joints but the side effects can be bad if one uses too much cortisone steroids and all that. so i am a little hesitant to keep having too many injections. i go to a Pain Clinic for that but they just give injections is all i see there.
well i will just keep riding this one out until i feel better again. I hope all you girls get some relief and find a way to work through your illness.

 

[Cheryl Ann]

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 just want answers to my symptoms from a doctor.

At first I disregarded the question you asked me because I didn't know how to answer it. I still don't know how to answer it :roll:
I have been diagnosed with 4 autoimmune diseases that I know of:
Ulcerative Colitis
Inverse Psoriasis
Fibromyalgia
Osteoarthritis

and now something is causing extreme inflammation. I got a shot of steroids which gave me insomnia 2x as bad as usual but I was basically pain free for 10 days. Woohooo!
Now the pain is back in a few joints and my foot and ankle are pretty swollen. I have a huge ulcer behind a front top tooth. The oral surgeon said the x-ray shows that the root of that tooth is decaying but my tooth is not discolored or loose. I think he is wrong and I am going to get a 2nd oral surgeon opinion if my dentist can't take an x-ray of it.

So, no. Other than pain somewhere in my body, everyday is different. Yesterday morning I woke up and there was a huge (quarter sized) red splotch on my leg. It hurts to touch it. Its quite warm. Today, I think it feels hard underneath it and I think its smooth. Part of the outer edge looks a little purpley.

I just want answers about my symptoms from my doctor too! :sad: Why don't I have any normal days anymore?

Oh! I thought of another commonality from one day to the next; I still don't know wtf is going on with my body! I'm scared too, although I try not to think about that bc it will cause stress so stuff, stuff, stuff. No, actually, I need to write which I guess I am and I need to do something positive like creating with fabric. Sometimes reading fiction helps.

Sometimes I do best just staying in my pjs all day. Today is one of those days ;-)

 

[Cheryl Ann]

God bless you LemonMoon♡ See if your pain clinic Dr will prescribe pool therapy. The water is usually around 92 degrees. The therapist will check your range of motion, strength and stuff like that. Then she will show you exercises to do in the pool. About a month later, if you're lucky, you'll feel almost brand new.

 

[darkchocolate]

At first I disregarded the question you asked me because I didn't know how to answer it. I still don't know how to answer it :roll:
I have been diagnosed with 4 autoimmune diseases that I know of:
Ulcerative Colitis
Inverse Psoriasis
Fibromyalgia
Osteoarthritis

and now something is causing extreme inflammation. I got a shot of steroids which gave me insomnia 2x as bad as usual but I was basically pain free for 10 days. Woohooo!
Now the pain is back in a few joints and my foot and ankle are pretty swollen. I have a huge ulcer behind a front top tooth. The oral surgeon said the x-ray shows that the root of that tooth is decaying but my tooth is not discolored or loose. I think he is wrong and I am going to get a 2nd oral surgeon opinion if my dentist can't take an x-ray of it.

So, no. Other than pain somewhere in my body, everyday is different. Yesterday morning I woke up and there was a huge (quarter sized) red splotch on my leg. It hurts to touch it. Its quite warm. Today, I think it feels hard underneath it and I think its smooth. Part of the outer edge looks a little purpley.

I just want answers about my symptoms from my doctor too! :sad: Why don't I have any normal days anymore?

Oh! I thought of another commonality from one day to the next; I still don't know wtf is going on with my body! I'm scared too, although I try not to think about that bc it will cause stress so stuff, stuff, stuff. No, actually, I need to write which I guess I am and I need to do something positive like creating with fabric. Sometimes reading fiction helps.

Sometimes I do best just staying in my pjs all day. Today is one of those days ;-)

Cheryl Ann, Thank you for trying to answer my question. Bless you heart! You are dealing with a lot right now.

Are you going to try and go to the doctor about that spot on your leg? You saying it hurts to touch it and is warm makes me think it might be infected. Have you thought about trying Epsom salt soaks? Maybe sitting in the bathtub or just putting a cloth soaked in the Epsom salt water?

Does blood work give a definite diagnosis of osteoarthritis or just by exam and symptoms? My referral to the rheumatologist is for osteoarthritis and fibromyalgia.

Take care of yourself and get a 2nd opinion if you need to. We know our bodies better than anyone else.

I hope for you to have more normal days more often.

 

[diamond]

Dear darkchocolate.....please don't think from what i have written that if you are diagnosed with fibro it will automatically get a lot worse....it may not. You are in this worrying process without a diagnosis..its scary any chronic illness that includes pain /fatigue is scary....but really you could still have a good life and i send you my best wishes.

 

[darkchocolate]

Dear darkchocolate.....please don't think from what i have written that if you are diagnosed with fibro it will automatically get a lot worse....it may not. You are in this worrying process without a diagnosis..its scary any chronic illness that includes pain /fatigue is scary....but really you could still have a good life and i send you my best wishes.

willow, you haven't discouraged me. I appreciate all the patience everyone on this board has shown me in answering my questions. I appreciate all answers.

It is scary. The waiting process and unknown can be very scary. I think, what does my future hold? Will I be able to continue to work? Will I be able to be the grandmother I want to be to my future grandchildren one day? Lots of questions and thoughts running through my mind.

I will continue to eat healthy, get the rest I need and try not to let stress and anxiety dictate my thoughts.

I truly hope you are having an enjoyable weekend.