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New here and recently diagnosed with Fibro
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kalen76 posted:
Hi everyone, I am new to the site and new to living with fibro and could use some advice. Back in Feb i began having terrible back pain, chest pain, nausea and left arm numbness. I was hospitalized and they thought I was having a heart attack. All of the heart tests came back ok and I was discharged. I was not convinced though and continued on with a cardiologist to have many more tests done, all of which showed my heart was good, except for the 24 hr holter monitor which showed I had some arrythmias, however, they said it was nothing to worry about. They did mri's of my back and it showed i had some disk degeneration and a protrusion. I was sent to rheumatologist and she said I have fibrolyalgia. She started me on Cymbalta and I began taking it this past Sunday. The first day I was dizzy, had the worst headache ever and was throwing up. Monday, i felt jittery, Tuesday i felt great...still had some pain but my mood was so good. I had energy and just felt great. Yesterday I feel like I crashed and burned. I was exhausted (like I always am), sad(like I always am) and in terrible pain. I know the dr said it takes time for the medication to work, sometimes several weeks, and I am trying to be hopeful that it will, but feeling like this is so discouraging!!! Right now the chest pain and neck pain are so bad all i want to do is lay in bed. Does anyone else have severe chest pain with fibro? Also, does the location of the pain change? Sometimes it's much worse in my chest,other times, my back, or neck, sometimes legs and sometimes everything. And for those taking cymbalta, has it helped and how long did it take to make a difference? Thank you for listening!
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missist responded:
Hi Kalen--
there was someone who posted just a couple weeks (?) ago with severe chest pain. I think she was asking just about the same question. Welcome!
Mary
 
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BetteK responded:
Kalen,

Fibro is like that. It goes different places different times. Some days it's a dull ache. Some days it's a sharp pain.

Now about your chest. There are muscles throughout your body. The ones between your ribs are called intracostals. Think about where they are. They are the "meat" portion of spare ribs. They move when you breathe. They move when you move your upper body. Like any other muscle in your body, they are supplied with nerves--the things that are getting all the wrong chemical signals in fibro. Sometimes they can hurt, I MEAN REALLY HURT!

Since you have been checked out thoroughly, your pain is probably from this and not your heart. Your Cymbalta has helped many of us with fibro, but some of us cannot take it at all and others get no effect whatsoever. Call your doctor's office and speak with the nurse or doc. Explain your problems and ask for a little guidance. There may be a way to lower the dosage and let you ease into the medication more slowly. That works for some of us. Or, it may be that Cymbalta is not for you.

There are a bunch of treatments available now. Some may help; some may not. When I had those scary symptoms and my non- heart- attack back in 1986, there were no fibro-specific treatments. There wasn't even a name or a criteria for fibromyalgia. We've come a long way! And things are getting better all the time.

Just hang in there.

BetteK
 
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Anon_10089 replied to BetteK's response:
Hello and sorry for what you're dealing with. I just wanted to mention that irregular heart rate can be a common occurrence with FM patients. It's often listed among other symptoms. I have around 6,000 irregular heart beats per day and have been assured they are benign. It doesn't seem right but no doctor (two cardiologists) of mine has been very concerned by this.

Also, I don't know much about this, but I do know some people on this board have talked about costochondritis. From what others have said, it causes a lot of chest pain. Maybe google the symptoms and see if it matches what you're going through.

This board is a great place for support and information!
 
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dollbug responded:
Hello kalen and welcome....MiMi in NC...dealing with the wrath of the dragon, aka FM....is indeed a *pain*, in more ways than one. The chest pain can be something that would scare anyone. I, too, have also had this and I thought that I was having a heart attack. (I think the doctors did as well)....I stayed overnight and had a lot of tests done. only to be told that it was Costochondritis (is an inflammation of a rib or the cartilage connecting a rib. It is a common cause of chest pain. I have had several bouts with it and in different places as well....on both sides and in my back as well.

When I have this I know that I must rest and use my heating pad and I take Advil (gel) and it soon gets better in a few days. We should never take chances though...but I do think that with time that we figure out what it is...(I know I have). It bothered me to try to even breathe. Coughing was out of the question as well.

As for Cymbalta and any other medicine that you might try. What works for one person may or may not work for you. You have to decide though. I know that when I tried the Cymbalta I truly wanted it to work for me and I continued taking it thinking my body would get use to it. I took it only a bit over 2 weeks....I got sicker each day and I finally called the doctor's office about it. My doctor called me back and told me to quite taking it immediately.

I know that my body is quite sensitive and I have tried different kinds of medicines thinking that I could find something that would help me cope better. I did not find anything that helped me enough without causing other side effects. So I then did my own research and did a *trial and error process and found vitamins and supplements which works for me. I have since learned how to *control my FM pain*....but I have not found anything yet to help with the chronic fatigue.

As with everything concerning the mean and ugly illness....it is a process to find the *right combination of tools* that will work for you. So I will say this to you and any new member here....you should keep on keeping on....until you figure it out. Learn all you can about FM and pay attention to what others have tried and found to help them. You will soon figure out just what your body needs as well. It does take time and effort....one should allow at least 6-8 weeks of whatever they decide to try, UNLESS...what you are doing is making you sicker instead of better.

Vitamin D....I would encourage you and any other new members to be sure and check with your doctor about getting your Vitamin D level checked....which is important to a lot of people these days. Low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well....(Again...do your own research about this...it is quite interesting what the medical researchers have found out about Vitamin D -which, by the way is a hormone...not a vitamin.

OK....please check out the info here under *tips* and *resources* and be sure and review the member toolbox as well. You will find some very good *tools* that perhaps you have not thought of trying....such as using a heating pad...or using Stopain Spray on areas that you are having the most pain with. Taking a hot shower at night using lavender bath salts in a stopped up drain helps to relax the body so that you can sleep better. Sleep is so very important to us FMers...(these are just a couple examples of tools that you might try).

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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rosielou responded:
Hi Kalen,

I have a weird chest pain symptom that they haven't been able to figure out, but have ruled out cardio and costochondritis. Been to the ER and sent home with instructions to take Advil. It only happens about twice a year, but most recently just last week. I've had many cardio tests done and they say my heart is in good shape.

Anyway, I call them rolling chest spasms. It starts just below the sternum as a terrible clenching and then the spasm moves up and outward. But once it gets going they can be anywhere from neck, shoulders, full ribcage, chest, that general area. Each one can last for minutes, and some are painful enough that I get that 'starting to pass out' feeling, when the blackness is closing in on your vision and you start going down.

Last week's started Tues night and finally subsided Thurs midday, had about 40 spasms during that time. It's over now and won't be back for months.

The docs think it's part of Fibro because there's no associated inflammation. During a spasm the muscles hurt, but afterward there's no pain, and they can't trigger anything by palpation. I take muscle relaxers and do the ice/heat thing to try to break the spasm.

Sorry this went on for so long, but I think it kind of matches part of what you're describing.
 
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kalen76 replied to rosielou's response:
Thank you all for your stories and advice!! This is a terrible thing to deal with but it is nice to know there is such a great community of people here who understand. My husband, unfortunately, has been less than understanding throughout these last couple of months The more tests i had done that would come back okay, the more he would think there was nothing wrong with me. Meanwhile, there were many days i couldn't even get out of bed the pain was so bad. Now that I have a diagnosis, he still just doesn't get it. Right now they started me on just 30mg of cymbalta. They want to try that for a couple of weeks and then up it to 60 (if i seem to be tolerating it). They did some blood work and are checking my vitamin d levels. I did learn a little about Costochondritis and thought that might be it but was given muscle relaxers and ibuprophen 800 and nothing seemed to help. Besides the pain, do any of you experience numbness? I get it mostly around my mouth and in my left arm and fingers, and sometimes my foot.
Thank you all again so much!!
 
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missist replied to kalen76's response:
Hi.. I get numbness too, and also have been disappointed in how people I care about react to my dilemna. I didn't ask for this..lol.. but by golly-if it were them--I sure wish I'd be kinder.

I'm adding you to my prayer list!
God Bless and hope you get some relief,
Mary
 
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kalen76 replied to missist's response:
Thank you so much Mary! I know, I feel like i went from being okay and normal to this, and I don't know how or why it happened, but now am just trying to deal with it and function normally. It just makes it even more difficult when the people that are supposed to be there for you and help you don't. My husband doesn't understand it, I get that. But he has watched me go from a super active, super busy mom of 3, to a person who has no energy, is constantly in pain, and can't always do normal every day things. I would think that would be enough for him to understand something is wrong!! LOL
 
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missist replied to kalen76's response:
It is sad, true. I often think that compassion is a dying thing these days. I was thinking of a phrase this morning--
'the cult of wellness' I am often baffled by websites for fibromyalgia or chronic pain that give advice that obviously did not come from someone who has it--like a study shows that moderate exercise does not add to fibro pain-- the example of 'moderate exercise' was either fast walking or jogging for 20 minutes. I nearly spilled my coffee. Jog? My knees hurt just getting out of a chair. LOL.

We seem to have a time in history when being healthy is considered an accomplishment. As if you can 'decide' to do it. Or eat & exercise your way to being healthy-- not true.

Another thing is picking on overweight people-- I recall as a child being told it is wrong to do that. I read a study that said 50% of people with fibro are overweight and and some other number obese. I thought-- Did anyone ask if they were fat BEFORE they got fibro? cuz that's the relevant number.

I was thin and working a physical job in a nursing home and had a child and another on the way. So-- I may be overweight now--but had I continued to feel well I would not have gained weight I'd have been much more active and much less likely to eat for comfort. LOL

It is sad very sad that people treat others so poorly in general these days.
mary
 
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booch007 responded:
Good mornig Kalen,

I am a cardiac ICU nurse by background and still work in the field...it is 35 years.

I laugh at my chest pain as getting ME confused and I will have a heart attack and say it is FM! It is tough to assess at times.

My rule of thumb is
1) does it change with deep breathing? = chest wall.
2) Can I touch it and it increases?= chest wall

I then use the heating pad and massage to help break up the muscle issue.

If the pain is felt inside and doesn't respond to those things THEN I would be seen. I am 58y/o and I have risk factors for a problem so I have to be careful.

Females as a rule present with subtle symptoms that are the heart. Even what feels like Esophageal Reflux can be the heart.. So it is not good to blame our dragon as it could be important. I usually have certain sites that get upset and have learned that is my dragon, but it is years of learning me and checking that I am OK.

I am sorry you are having this syptom presentation as it is scary, despite painful. All my pains don't get me as much as my hot spots in the rib areas. I use trigger point injections by neurology and they are injected. I shot a couple yesterday as I am trying to get a party here for the Holiday but I am a mess.

So, please learn those easy steps of change with brething and touch to help oyu figure oyu out. If you can't assess it...be seen. I don't know your age but we have has negative looking studies and there is disease present. IT IS THE TRAINED sharp physician and the continued complaints of the patient to say something is wrong.

Story: an 80 y/o millionaire came for a stress test and I found little, then he had a nuclear, again little was found only that blood pressure dropped during the test and he was short of breath.....he has had an aortic valve replacement and sometimes that in itself could be the cause. Anyway, he is active and he just kept saying THIS ISN'T ME**

We then did a stress echocardiogram: HE HAD THE MOST DANGEROUS BLOCKAGE YOU CN HAVE!! Not seen on other tests, but looking at the wall motion of the muscle in ECHO it was apparent !! I was so happy we figured out the issue and he had bypass and is back to being active.

You know you...try the heat and massage, I like using the bar of soap when slippery in the shower to work those muscles and they are warmed up.

Good luck, Hugs (gentle hugs) NancyB
 
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rosielou replied to booch007's response:
Thanks Nancy for your "Rules". When my spasms get going I've been taking a deep breath and holding it as long as I can, often enough it slows down. Now I know that means things are good.

RL
 
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Mortisha responded:
Kalen76,
I am so sorry for you. I have had fibro now since 1996. I live with it daily. I wish I could offer you some hope, but the truth of the matter is that it never goes away. I have had my time with chest pain, pain down my arm etc.. I have been to the emergency I don't know how many times thinking I was having a heart attack. I go into fibro fogs where I wake up in the silliest places and time is lost. I fear driving what if it happened then??
If you are not happy with your current rheumatologist then get a second opinion, there are different treatments. My mother is on Lyrica for neuropathy and fibro, and she says it helps. I do believe Cymbalta and Lyrica are the only two drug out there that are FDA approved for Fibro.
If you read my little story you will understand my pain and know that you are not alone. Talking about it and knowing that there are others out there like us helps our psyche trust me.
I have no insurance right now, but as soon as I do I am going to a rheumatologist and ask if they can implant a device into my back that is suppose to relieve the pain since it is like cutting glass with a rock to get any kind of narcotics anymore. Narcotics are the only thing that relieve my pain. I do not misuse them, and statistically people who have "real" pain do not become addicted to them. I believe that because I have gone without and not suffered to many withdrawals Keep smiling even if it hurts.
 
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kalen76 replied to booch007's response:
Hi Nancy, thank you for the tips on how to judge if my chest pain is heart related or not. It has been so difficult and confusing for me. There are times when taking deep breaths causes the pain and other times that it does not. There are times that I have heart palps, and times that I don't. I had every cardiac test imaginable including a cardiac mri, and aside for heart arrythmias on the holter monitor, which i was assured were nothing to worry about, the tests were all clear. I am 37 yrs old, am a healthy weight, do not smoke or have high cholesterol. So of course, all of the drs have looked at me like i was crazy when i though something was wrong with my heart!! I kept worrying that maybe it is cardiac microvascular disease which I know does not show on many traditional tests. The drs don't believe that it is. I guess I am pretty convinced at this point that it is the fibro causing it, but the palps along with the pain make it very unsettling. Thank you so much for the advice!!
 
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kalen76 replied to Mortisha's response:
Thank you Mortisha for sharing your story with me! I am hoping the Cymbalta will prove effective for me. Right now, I have just started the 2nd week on it. Next week the dr plans to increase the dose to 60mg/day.
I hope you are able to get insurance again soon and find some relief!! As if having to deal with the fibro isn't enough, the last thing you should have to worry about is paying for meds!


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