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More on flu like symptoms
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hisfaithful1 posted:

This is such an interesting topic, so let's explore it some more.
I really thought only a few of us with fibro feel like we have the flu.

From the previous post about it, and sorry, I don't remember who started it, but thank you so much, we can see it may be fairly common!

With me I kept having these episodes where I was so achy and 0 energy, just so very fatigued. Felt like the flu, but not with all the usual symptoms. It took about a year of this, maybe more, till I finally told my doctor about it. Now that I look back on it, it's funny how we forget certain things, ( or not ) lol but she told me it sounded like I may have fibro. I was stunned at the time, and honestly thought she was really reaching. I had just started seeing her, and knew it couldn't be fibro.

Even when she did the tender point exam, I did not believe I had enough of a reaction. She told me I reacted to 15 out of 18. I thought, no she's just wrong, since I had read up on it, it should have hurt more than it did. Denial perhaps?

so how about you, do you feel like this all the time, or is it only when you are in a flare? It comes and goes with me, and the duration and severity varies.

Can you all go into a little more detail about how you experience this?
Do you have flu like pain all the time? Or off and on? Or is your pain completely different in nature than this?

I think it helps to be reminded we are not alone in what were going through. Thanks in advance for your input.

Your all in my thoughts and prayers

Debbie
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hope4me2you responded:
Hi, yeah I was diagnosed 12 yrs. ago after going to various doctors, and running the gammit of ex-rays. All other illnesses were ruled out, finally diagnosed by a neurologist. They had very little to go on as far as tests and treatment. It started up in my neck, upperback, and arms. I had also previously had carpal tunnel in both hands. Fatigue was debilitating. The aching pain has since traveled down my back into my hips and lower back. Making any activity strenuous and difficult. So, yes at times the aching in the muscles and joints, coupled with exhaustion feels like the flu. I also have seasonal allergies that wipe me out. I have periods of time where the pain is manageable, I can function a bit better, than it rises up to a level where any exertion creates more pain. Its constant looking for relief, and relishing when you can have a fair level of activity.
 
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katmandulou responded:
This is a very interesting topic!


I had my first really awful flare last month. I couldn't imagine why I felt so icky - achy, queasy, even my hair hurt. Lots of stress, I'm self employed with no work AND I'm on the board of a non-profit going through some bad staffing stuff. I was able to up my meds (elavil) and came through it, but I'm still not back to my normal. I guess it will come in time. I knew it was the fibro because it's summer and there's no 'flu' going around.
 
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1wareaglefan responded:
Hello, Debbie. By the way, I like your screen name. I almost used that as mine! Anyway....I've experienced the flu-like feeling several times. It's always when I'm having a really bad flare. It's simply the best way of describing how I'm feeling. My entire body aches more than usual, even my skin seems hot and hurts. All I can do is lie down, take pain pills, and wait for it to get better.

It's different from my usual everyday pain, and like I said it signals a flare. It's always been when I've overdone it somehow.

Take care.....Elizabeth
 
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jamesii responded:
Hi Debbie, Jim here. I am presently in a bad flair that is beginning to ebb a bit. I have had a bad bronchial problem off and on since march, I have been weak for last couple of weeks, burning skin all over my body, and just to weak to do anything. My head was ringing real bad, I know a flair is coming when my head starts ringing.

Yes, it is very much like having the flu. If I had a temperature and sweats I would absolutely say the flu. But, not those.

I just yesterday started back to walking, 10 minutes, then today 30 minutes. the ER Dr said to start gradually, not all of it at once. So, in a few more days I will be back to my daily amount of walking.

I was very weak, almost couldn't stand up. My lower abdomen swelled real bad(IBS related to Fibro) making breathing difficult, my chest muscles are very sore, and were worse than that. I went to the ER a week ago and the Dr checked that and said it was muscloskeletal in nature. Costo in nature. I never get rid of that.

Yes, you have asked a question that pertains to almost all of us. I do have the skin burning probably worse than most. But I am trying to survive that also.

Hope that helps to explain it. Wish I could tell you what to do to make it better. I just don't know anything that will.

Take your meds, hot soaks, lots of breaks, hope for the best, pray for a cure and you have done all you can.

Ark Jim
 
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hisfaithful1 replied to 1wareaglefan's response:
Elizabeth, how funny you almost used the same screen name, I've had it for about 7 or 8 years, and have never seen any similiar to it. You probably guessed I chose it because of my faith in the Lord.
Having this kind of pain is hard to deal with isn't it? When I flare that's exactly what I have to do, lie low, put off any activities I can, and make the best of it.

Katmandulou, It sounds like you have not had fibro for very long if you just had your first flare. I hope the stress gets more manageable for you.

Hope4me2you.. the fatigue hits me pretty hard too. I have found that forcing myself to get up and do at least a little something helps alot, and as so many others have said, pacing is so important. It's so hard sometimes to make myself stop! When it feels like the flu, I really can't do much at all, thats when it's the hardest.

God bless, and hope you all have a nice evening.
 
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hisfaithful1 replied to jamesii's response:
Hey Jim, so sorry to hear what you have had to endure. It sounds like you have one of the more extreme cases of fibro.

I had been wondering if most people's pain was similar, and if I was in the minority for it to feel like the flu. Now I see its not the case. I had read many posts here and on a few other sites where peoples pain was described like cramping, or like something pulling really hard on their muscles, and that tells me everyones pain can be different. The burning you describe sounds terrible, it kinda even sounds like nerve pain. I get it too, but only sometimes, and only in my hands and feet at night. Fatigue is awful, and memory problems so frustrating.

I do believe God allows us to go through hard trials like this for different reasons. One of them being to help us to depend on Him more. Or so we can know what pain and suffering is like so we can help others deal with it. Paul had his thorn in the flesh, and he is such a wonderful example of someone depending on the Lord to see Him through. I love the zeal this man had.

I read some of your posts and know you were once a pastor. I suppose God decided to use you in a different way. I'm sure you are a blessing to many here. God can use us in all different kinds of ways huh? And what a comfort to know, He will never leave us or forsake us.

I will pray for you, and hope things get better soon.

Peace & Joy

Debbie

For to this you were called, because Christ also suffered for us, leaving us an examlpe, that you should follow His steps.

1st Peter 2:21
 
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mischelle360 responded:
Debbie,
That describes me this last year... Always felt flu'ish, hurt all over, extrema fatigue, just knew I had to be burning up with a fever, yet there was never a fever. I also kind of blamed it on my sever IBS (diarrhea) that I have had as long as the flu like symptoms... Thought perhaps It was making me weak, but I knew it shouldn't last That long...

I honestly thought I had cancer, that is how bad my pain had gotten and how low my energy level was. I was scared and not sure I wanted to know... Then I seen a commercial on TV about FM and knew that was my problem. Researching it on here confirmed it for me and I went to the Dr and told him I thought I have fibro.

Luckily he is treating me for it with Savella while ruling out everything thing else. All blood work has ruled out all it can. But my Vit D was low when I requested it to be checked and since starting the Vit D, it has taken my diarrhea away.... yeaaaa.... At least for the most part it has.

I have lost track of time but it's got to be going on a month now since starting Savella and it has helped a lot, until recently. I have been in a flare for about a week now at least.

So here is where and how I hurt when in a flare.... I feel achy all over (flu like symptoms), sometimes my back hurts bad, or my neck and back.... but mostly it is my neck, back, legs and feet at the same time. It will get to a point that I will beg, even bribe my girls to massage those areas.... Any of them areas! Then there are times I can't stand for anyone to touch me at all, it just hurts too bad.

And the achy feeling can be different on different days. On a good day I feel like I have a mild case of the achy-ness, on a bad day, I hurt so bad I can't stand it.
 
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hisfaithful1 replied to mischelle360's response:
Thanks mischelle for sharing what you go through. And how amazing that you saw a commercial and just knew that was what you had! I believe that was a God send for you. Not knowing can be so scary.

It sounds like you have a bad case. I am really glad though that the vitamin D has helped with the IBS. It must have been too much on top of everything else. I hope when it gets so bad you can't stand it, you are able to rest, use a heating pad, massage from your girls, or what ever else may help. Sometimes i make myself go out and walk even for 1 or 2 blocks,or just get up and move around the house some. but I know... I know there are some days we just have to allow our bodies to rest.
Have you been able to ask for something for pain besides the Savella? Tramadol or something similar may really help you.

I think my good days are when the fatigue has let up a little. It is the hardest for me, and also the forgeting, my memory is so bad, and it gets really embaressing sometimes. I have noticed recently that when I forget something, like the most easiest little thing, I feel anxious about it, and stressed. even my DH who is loving and compassionate gives me this odd look, like... are you kidding, you don't remember that!?

Someone tells me something, and the very next day, sometimes the same day, I forget. I wasn't like this till this year.
If you know of anything that will help with this let me know.

I pray you and your doctor will be able to find ways that will give you some more relief, especially for the bad flares.

Please keep us posted.

Take care Mischelle

Yet I will rejoice in the Lord, I will be joyful in God my savior.
Habakkuk 3:18
 
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mischelle360 replied to hisfaithful1's response:
Thanks Debbie!

I too think it was a blessing...

I have suffered off and on over the years with it. And with each flare (feeling flu'ish) it was always put off as allergies or viral. I do have allergies and know what they feel like. They don't feel like you have the flu, although they can make u feel bad at times.

Allergies and most viral things that go around make u feel... runny nose, or stuffy nose, used to I would break out in a allergic reaction to a lot of different things. They can also cause sore throats and even turn to bronchitis. So when I complained of "feeling bad" it was always hollered allergies. I felt bad.... I Hurt.... Not sick as in "achoo". Although I do get that too at times, lol.

Getting up and moving around does help. Esp after sitting for a period of time. I so agree there! Too much walking when in a flare will put me in the bed... or used to, I haven't really pushed myself a lot with this flare and it is the first one since Savella.

I haven't asked for tramadol yet but after reading about it here I will be asking my Dr about it my next visit. Or do you think they would do it by phone? I'm not sure.

I do have a few loritabls left from my gallbladder surgery, I have been so tempted to take one the last few days but I am not sure if I can being on Savella?

Fibro Fog, I have suffered with that for so long. Was told in school I had a learning disability, well I now know my learning disability was fibro fog.

I will say that Savella has helped some in that area as well. Usually when someone asks me what I just said, I can't repeat it for the life of me. It just flies out of my mind and I can't get it back (I feel put on the spot). And my hubby and kids will do me like that on purpose just to mess with me or throw me off. My hubby tried it a few weeks ago and I was able to repeat what I had said! I was like... You can't do me that way any more now that I am on Savella! LOL

But don't get me wrong, I still get the fibro fog, esp since the pain is back, but I don't think it is as bad as presavella.

Used to and probably still would... When someone would ask me what someone had just told me about them, whether good or bad, I have never been able to repeat things. I don't like doing that for one, (it's like starting trouble, and would rather not be in the middle) but I also really can't remember. I can explain how I took it, but I can't say exactly what they said. So IF I choose to explain something I am up front with them that this isn't what "they" said but the way "I" took it. And I still forget half of it! lol

Take Care and I hope you are resting! As I am fixing to be for at least a few hours (hopefully) until I have to get my girls up and off to school.
 
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mrahoe replied to mischelle360's response:
hello

it was an add on tv for me as well . . i kept describing it as a flu that made me feel like someone had beat me with a baseball bat. i have felt this way for 10 yrs but it took that add to say hey that sounds alot like what i have been dealin with. my gp said he hoped for my sake that i didnt have it but he sent me to nero and within a 15 min exam i was dxed .

with me it seems the only time i am not in a total flare up comes in the spring and only lasts about 2-3 weeks. the first two yrs after i felt this way i felt good enough to try and work, big mistake on my part as i crashed and burned within a month each time. and now my dr has told me not to even try as it takes me 4-5 days just to recover from going out of the house to see him.

i not only have the flu feeling but have bad ibs, muscle pain & cramps, burning and itchy skin (iv scratched holes into my skin at times) my hair hurts so bad im back to a brush cut like i had in the army. my pain other than those few weeks in the spring goes no lower than an 8 and spends more time than i want at a 10.

the brain fog is so thick at times. (talking on phone to a friend the other day and could not think of my better halfs name) she thought it was funny at first but me...not so much.

hope everyone feels better today

john
going to church doesn't make you religious, anymore than standing in a garage makes you a car......
 
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hisfaithful1 replied to mrahoe's response:
Hey John, Sorry to hear how much you suffer with this illness. I hope your able to take something that helps, and also something for the bad flares.

I know what you mean about the fog of fibro, it is bad with me as well. I just can't seem to retain certain things. Plus I call people I know by the wrong name sometimes. Or someone tells me something, and a minute later it's gone!

I do not think I could handle working any more, and have just applied for disability.

I pray they will soon find something that works better than whats available now.

Take care, and it was nice to hear from someone of the male gender who is going thru this too, but sorry for you also.

God Bless

Debbie
 
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mischelle360 replied to mrahoe's response:
Hey John,
I think it was a commercial for Lyrica, lol. You?

I for one am glad to be able to put a name to my illness and hope I find a way to cope with it now. I too have been so sick for so long with this, without realizing just how sick I was. But this past year there was no denying something was majorly wrong with me as my pain level stayed to at least a 7 all year. So I truly feel for you!

Hopefully your Dr's will find a way to ease your pain.
 
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hisfaithful1 replied to mischelle360's response:
Hi Mischelle,

I am really frustrated because I answered back to this last post of yours, it was about as long as yours was, and I swear I thought I had checked to make sure it was posted, was sure it was. So either it was taken off for whatever reason I wouldn't know, or it just didn't go through. Oy vey! Probably just another attack of the good ole reliable fibro madness, er.. um.. I mean fog!

So now I come back, and it's not here! I'm sorry, and I am not feeling to great now either.

I had told you some of the other ways fibro fog hits me. Anyway it happens to me alot like it does you. Sometimes it can be embaressing, and sometimes I gotta laugh, like when I poured orange juice in my bowl of cherrios w/bananas!

Also had said I hope you can see your doctor soon so you can get better pain relief. tramadol does help me, and many others with this illness.

Feeling to lousy to write now, it does feel like a flare, extra fatigued, and hurting all over. Ugh.. and got to get up early so me and DH can drive to Martinsburg to the VA. DH has to have a test there. It will be a long day. Well, one part I lkie is going to the christian bookstore there, and we usually have a nice lunch at the Red Lobster too. It's a treat because we do not have either one of those here in the big town of Cumberland.

I hope your feeling better!

Blessings

Debbie
 
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mischelle360 replied to hisfaithful1's response:
Now I feel ur frustration! I just finished posting a long reply and it didn't go through either... And to think, I came so close to copying it because I had a feeling that was going to happen! lol

I will repost when I get back on... I hope your trip went well and didn't cause you too much pain...

Take Care!


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