Flare ups!?! Help. Fairly new diagnosis

[Mpeluszak]

I have been "sick" my entire life. As my husband says "it's always something with you." After seeing doctor upon doctor I was finally diagnosed with fibromyalgia. Great, finally a diagnosis, however, no relief. I have tried cymbalta and lyrica, both having very little if any effect on the pain but mental stability was greatly affected. I have tried aquatic therapy, again, with very little effect. I am currently in the midst of a flare that has been over 2 weeks now. I have no energy, very tired, hurts to move but hurts to lay down. Have not been able to work b/c everything is painful to do. My dr has me on intermittent FMLA for when a flare occurs but refuses to even entertain the notion of disability. How long do your flares last? How do you ease the pain and function daily? Are you still able to work? Any help/advice is appreciated!

 

[medicmurphy]

I'm currently in a flare, been 2 months. Weather and barometric changes are a huge trigger, which sucks as I live in a geographical location where Chinook winds blow throughout winter. These warm winds cause drastic temperature fluctuations which in turn trigger migraines, respiratory issues and pain!

Flare up are different and unique to each patient. In time you will learn the triggers and hopefully with some avoid them all together. Common triggers are extreme exersize, illness such as flues and colds, stress, weather changes, caffeine, inflammatory foods, alcohol, etc, etc.

Speaking for myself, treatments that work one day will not work another. As well, the longer I have Fibro the more intense the symptoms. My Dr and I are on a first name basis lol. I also had to stop working 6 years ago. Thankfully my husband is understanding and empathetic. He makes it his business to attend as many as my Dr appt as possible. Not only is this a show of support but he also asks questions in order to learn as much as he can. Perhaps your husband can do this if he hasn't already. This condition is very hard on family and friends. They see their loved one change and there is not much they can do about it.

btw, what is FMLA?

 

[Mpeluszak]

FMLA is family medical leave act which affords me unpaid job protection up to 12 weeks in a calendar year which is helpful but when I'm out of work 2-3 weeks at a shot that runs out quickly. Do you mind me asking, are you on disability. My dr told me they don't put people on disability b/c they found staying active typically helps. Easier said then done for someone who doesn't suffer.....

My family did have the flu about 1 week prior to my flare beginning-wonder if that was the cause this time.

My husband is getting better and has been doing a little research. At this point, it's my extended family who just rolls their eyes. Hoping it will get easier and there will be some medical advancements soon to offer more proof of this illness.

 

[medicmurphy]

Thx for explaining FMLA.

No, I'm not on disability. I live in Canada and it's impossible to qualify with Fibro. I did qualify for disability tax credit so my husbands saves each year on his claim. Other than that I'm up the creek. But at least I'm not alone.

If you're fighting of the flue that will explain your increased fatigue and other symptoms. Sadly, some in the medical community greatly underestimate Fibro and it impact on patients lives. Both physically and emotionally. My career was as a critical care paramedic. I worked two jobs!! I never ran out of energy. Today, I never HAVE energy. I had to retire early because the shifts and stress were taking a toll on me.

Good to hear your husband is making an effort to learn more about this condition. Good for him.

 

[Lou38]

I wish I knew how long flares last, I do know the good days are getting less and less. Over the past couple of years I had 2 or 3 bad flares that lasted a few months. I had another one in October which lasted until after Christmas, I got at best a couple of good weeks in February and have had another flare for a week so far and I don't think it's going anywhere anytime soon. I still work mon-fri and do 30 hours each week as a secretary which is really tough but I just muddle through. I'm determined to keep my job and not let this beat me but with every flare the doubt begins to creep in. I'm far too stubborn and independent for my own good

 

[Wineisfine]

Hi there,

I am not working, and on disability. It wasnt a problem getting it. Exercise does help but in small doses. Its a matter of doing a little at a Time, taking breaks and naps. I use the battery analogy; I am a triple A while they ( people without fibro ) are lithium. Warm moist heat helps with the pain. I have heard that wool helps and I am going to get a wool mattress pad to see if it helps with sleep.

 

[BunBun34]

Wineisfine,

Can I ask how u went about getting disability? Have you had hospitalizations? I'm getting to the point where I'm only deteriorating with severe flares 2-3x a month. I'm sure it's directly related to the type of work I do. My boss has been understanding, but it's been tough. I'm with a new doc and wanted to talk to them about FMLA at least. I just feel so bad even asking about it. ��

 

[diamond]

BunBun34

Dont feel bad you are doing well to keep going and working. I only learnt what FMLA is from this site but i would ask so you at least have that to take a little pressure off for those worst days.

We dont have anything like FMLA in the UK, and it would make sense to have this in place for 2 reasons..one in kind of confirms the level of your illness and that you are being taken seriously and it's documented you need help and flexibility..the next reason is if you do go for disability it shows you already have problems keeping up with your work schedule....so not like you would be jumping from perfectly healthy to trying for disability.

I dont know about the US but from what i have leaned again from reading posts over the last 18 months im pretty sure there is no criteria of needing to be hospitalized to file for disability.

A very knowledgeable person i think called rtphotos did a long post many months ago about how to go about claiming disability in the US. Im sure if you call up all her/his posts going back several months you will find it.

Its all about keeping all you symptoms and difficulties logged with your doctors etc and lots of excellent advice. Good Luck and please dont feel bad or beat yourself up..you didnt choose this illness and you are doing your best...that in itself is no mean feat physically or mentally...it takes strength and courage so quite the reverse of how you are feeling about yourself!

 

[Wineisfine]

Wineisfine,

Can I ask how u went about getting disability? Have you had hospitalizations? I'm getting to the point where I'm only deteriorating with severe flares 2-3x a month. I'm sure it's directly related to the type of work I do. My boss has been understanding, but it's been tough. I'm with a new doc and wanted to talk to them about FMLA at least. I just feel so bad even asking about it. ��

No hospitalizations, just plenty of documentation, and going to experts. My doc at the time knew Fibro and CFS. With disability you will need to document how the illness it impacts your life and your inability to work, and live.

Gosh dont feel bad asking, we cant push ourselves. Your health is your priority.

 

[Mpeluszak]

So I need some advice. I have been having a bad flare for over 3 weeks now. My rheumatologist told me today that a flare should not last more than 3 days and I need to go about my normal day to feel better. I was regally offended by that and am now so upset I can barely write this. It's bad enough when family and friends doubt you but to feel like my dr is doubting me is really upsetting. Am I crazy? Should I not be feeling like this? Do you think it's time to try and find a new doctor?

 

[medicmurphy]

Wow, I'm in the midst of a flare that's lasted a month. Do you think your symptoms are getting worse? Sometimes it's hard to tell when the worsening Fibro symptoms begin and a flare ends. So yes, you can very much feel like you are. Not sure what to do about the Dr. Without a doubt we need a Dr who is compassionate and understanding who also believes us. Perhaps it wouldn't hurt to try and find one who you will feel more comfortable with and whom you can put confidence in.

 

[Lou38]

Yikes. If only a flare lasted 3 days, that would be awesome! I'm almost 2 weeks into another flare and if anything my knees are getting gradually worse each day. I think you should definitely consider another rheumatologist but I know how difficult that can be. There are only a couple of rheumatologists in my area so I need to take what I can get, mine seemed really good & really thorough at my 1st appointment but unfortunately I saw his assistant at my last appointment who was useless. Good luck & I know how impossible it feels but try and rise above it, I know I never do, I guess I'm still quite frustrated and coming to terms with this. Let us know how you get on.