Fibromyalgia?

[0716]

Hi all! I’d love any thoughts anyone can offer. I have been dealing with muscle/joint/whole body pain for over 2 years now. My first diagnosis was PMR. The pain became more widespread and more intense in the last 6-8 months. Rheumatologist diagnosed fibromyalgia. My blood tests came back very high last fall, ESR was 104 and c reactive was 40. Had new labs done today because my body feels like I was literally hit by a truck. ESR 98 and c reactive 32. PC said with multiple elevated tests “something else is going on”. I have an appointment with a new rheumatologist next month that I booked in NOVEMBER! I am in so much pain and need to get this figured out. Any thoughts?
TLDR: is it fibromyalgia or something else?

 

[sweetkamie20]

Wow! Feeling bad! Sorry to hear

I wish I knew what the blood work results mean but the only things wrong on my blood work were inflammation markers...

Let me see if anyone else can help @sunkacola @cookiebaker @Auriel

 

[JayCS]

is it fibromyalgia or something else?

Hi 0716, and welcome! Well, I agree with the 2016 ACR fibro criteria that it can well be both fibro and something else. It's just a question of if the fibro diagnosis is of any additional help, like for treatment or disability etc. For treatment, much of what we share here should help most people with invisible pain conditions. Unusual results can point docs to test further. In my experience I regularly/always get 5 or 6 unusual results, but the further tests come up with nothing at all, and then they start saying: well, they're maybe not that unusual, and we can't say, have to keep checking....

 

[cookiebaker]

Afraid I am not going to be much help either, to be honest.
But yeah.. elevated inflammation labs do generally mean something else, besides fibro (as in fibro does not typically cause those labs to be elevated.) just as a comparison, my last c reactive was 0.7 and ESR of 9

At this point, the best I can offer is to try not to dwell on things too much.. stress makes things worse.
I know it is not easy, but do your best to distract yourself from the pain until you can get in to see the new rheum.
I would also suggest reading thru sunkacola's advice post - there are a lot of non-medical things you can try to reduce your pain levels..

My advice for managing fibromyalgia (especially for newcomers)

 

[Auriel]

Well, if they diagnosed fibromyalgia then i guess its probably that? it's entirely possible you've got something else going on as well. Hi kamie! , well 0716 the most I can do is send you some cwtches
, offer some tea + cake! + welcome you to the forum + hope that everything gets sorted out so you know exactly what's going on? and maybe check diet (see if eliminating things can make a difference) X

 

[sweetkamie20]

Okay, @JayCS i tried not to abuse your kindness by volunteering you this time

 

[sunkacola]

@0716 , None of us can tell you if what you have is fibromyalgia or not, since of course we are not doctors nor are we there. Just because a doctor says it is not fibro doesn't mean it is not, and equally just because a doctor says it is fibro doesn't mean it is.
False diagnoses in these things are very common.

also, just as Jay said, having fibro doesn't preclude having attendant disorders as well.
Unfortunately, all you can do in terms of diagnosis is wait until you have had all of the appropriate tests to determine what is going on. Don't forget that many other conditions have the same symptoms as fibromyalgia, and testing for those other things shouldn't be overlooked.

Remember that it's not necessary to have a formal diagnosis in order to work with your body and start finding out what might be helpful to you that you can do on your own. Cookiebaker linked to my post about this above.

One piece of advice I will give is this: If your doctor(s) want to start you out on pain medication, try doing the other things you can do on your own before starting out on a regimen of taking medication daily. Some medications have terrible side effects, some are addictive, and some don't help some people at all. If you try the things you can do for yourself first, you can get a head start on being able to mange this yourself. Take the scrip for the meds if you want to, but try hard only to use them when the pain is so bad you can't do anything to help yourself. If you start out taking meds every day it may be harder for you to discover the non-medication things that will help you.
Just a suggestion, of course. You do what you feel is right.

 

[JayCS]

Okay, @JayCS i tried not to abuse your kindness by volunteering you this time

Hahaaa, yeah, we very much noticed the conspicuous . . . . . . . . . . . . . . . . . . . . .. . . silence / absence
Actually, I was gonna add to @Auriel's take that you calling me helps me prioritize better.
And the state I'm in I need to, but on the other hand it's better not to move, 2 games of table tennis and 20 minutes shop was too much today, can't talk or listen to anyone, but reading and writing is perfect.

 

[sweetkamie20]

Bummer you're feeling this way. Glad you got your ping pong in though.

Well this new invitation to tag you is a fabulous arrangement!

 

[JayCS]

Bummer you're feeling this way.

Just caught on that reducing my glutathione might explain a lot, actually good for MCAS and energy.
That'd be maybe the last straw from/for the recommendations of my new health practitioner. Or ex-...

 

[johnsalmon]

ake the scrip for the meds if you want to, but try hard only to use them when the pain is so bad you can't do anything to help yourself. If you start out taking meds every day it may be harder for you to discover the non-medication things that will help you.

The problem with this advise is that some of these medications require a buildup in the system before they take full effect. By stopping and starting you can upset this and depending on the medication you may end up in withdrawal. best to take the medication and report the results back to the doctor so he/she can adjust the dosage or change the medication. at the start it requires a close relationship with patient and doctor to get a workable treatment plan in place.

 

[sunkacola]

The problem with this advise is that some of these medications require a buildup in the system before they take full effect. By stopping and starting you can upset this and depending on the medication you may end up in withdrawal. best to take the medication and report the results back to the doctor so he/she can adjust the dosage or change the medication. at the start it requires a close relationship with patient and doctor to get a workable treatment plan in place.

This is true, about some medications.
But I stand firm on trying everything else that is non-medication first, before using medication.

If the medication is a tricyclic or similar kind of medication, it does take time to build in the system in order to have effect and you can't just take it now and then. So in that case, better not to take them at all unless other things non-medication are not working after giving them a good try.

However, (and I did not make this clear) there are other medications that are strictly for pain, which you can take just once in a while if pain is bad, and those are the kinds of medication I was talking about. In the case of these, such as tramadol, you do not have to take them daily and can only take when you need extra help with the pain, which is better than taking them daily.
I should have been more specific about this.

 

[johnsalmon]

such as tramadol

it comes in two types one slow release and one quick release - stopping and starting on the quick release is ok but not for the slow release. I went on slow release tramadol because the doctor said Codeine was to addictive however they are both about the same on that score. I used to take codeine for my spinal problems until the Government down here decided to restrict just about every pain medication. I found that codeine had no effect on the fibromyalgia pain. I went on Lyrica and have good success with it - it stops the extreme pain although I still get minor flares. I take two seizure medications Lyrica (fibromyalgia) and Primidone(essential tremor) but they seem to work beside each other

There seems to be a worry about addiction on the forums - my partners mother in her 90's went into a retirement village now Ruth like to smoke and like her little glass of sherry each afternoon - however the powers to be took her cigs and her sherry on the basis that cigs would give her lung cancer and sherry would give her Cirrhosis of the liver - mind you she had been smoking for well over 60 years and drinking her glass of joy for the same time and no signs of lung cancer or Cirrhosis of the liver -

the moral of this story is if you a fourteen year old kid being put on addictive type drugs then you should worry - if your a senior then what's it matter you will probably die of other age problems before the effects of addiction fully kick in

 

[sunkacola]

the moral of this story is if you a fourteen year old kid being put on addictive type drugs then you should worry - if your a senior then what's it matter you will probably die of other age problems before the effects of addiction fully kick in

Well, I can see how you would come to that concept, but it's really not accurate.

Addiction can happen very rapidly with some drugs, within only a few months, and opiates like Tramadol are among these these.
I am not sure what you mean by "affects of addiction", but addiction itself is the effect you want to avoid.

It really doesn't matter how old you are. You don't know how long you have to live no matter how old you are, and I don't know why anyone would think that it would be OK to spend the last years of life, whether that is 5 or 20, addicted to a drug and jonesing for it if it is not immediately available.

Which leads to another thing.....becoming addicted to a prescription medication is opening yourself up to the possibility that the drug will be made illegal, or access to it will be restricted. This can happen almost overnight, and suddenly the drug you are addicted to isn't available any more, or your doctor can no longer prescribe it to you, causing you serious problems. This happened to thousands of people who were prescribed drugs like Tramadol and other opiates prior to the crack-down on the over-prescribing of opiates.

I think your concept of "if you are old it doesn't matter" would only apply if the person were literally in hospice care. And at that point, I would agree that getting addicted when one is going to die in a few months anyway would not be a problem.

I sure don't want to spend the last years of my life, no matter how many or few, being addicted to anything!

 

[MNGal]

I would defininatley recommend seeing a rheumatologist.