In denial and scared.

[johnsalmon]

But it makes long, hard guinea pig trialling necessary.

my doctor thinks it fibromyalgia based on mt descriptions of what is happening to me my neurologist thinks it early als (both have similars symdons) hopefully he is wrong and hopefully my rheumatologist will come to an conclusion - the point is it is not an easy job for any doctor to determine that you or I have fibromyalgia the old trigger system was found to be incorrect as many people who did not have fibromyalgia had pain when trigger points were pressed now they have another idea ie
To meet the criteria, you must have pain in at least four of these five areas:
Left upper region, including shoulder, arm or jaw
Right upper region, including shoulder, arm or jaw
Left lower region, including hip, buttock or leg
Right lower region, including hip, buttock or leg
Axial region, which includes neck, back, chest or abdomen

well I would fail on that test
except I have left lower region but that is from spinal problems
so as you can see diagnosing fibromyalgia is not a straight forward so ticking points on a bit of paper is not going to tell if you have fibromyalgia.

So don't give up - if you have pain then demand that the doctor prescribe medication for it - if it does not work then demand he changes it etc for your brain fog learn how to relax try zen that will help with the pain also and get yourself a small tens machine (you can get them on fle-bay for under $50.)

 

[sunkacola]

its som e thing I have suffered from since 16 the only difference is t4/t5

It is always interesting and at times helpful to describe to others what our symptoms are and what is thought, or even determined for certain, to be the cause of them.
However, having the same symptom as another person, even having the same apparent cause, does not give any of us the ability to tell another person what the causes are of their pain or other symptoms, or whether or not they have fibro or anything else. Exploring the possibilities is always useful. Telling another person what is going on with them based on posts in a forum is not likely to be helpful.

 

[sunkacola]

I was simply asking for some advice and Seeing if anyone had similar symptoms in order to suggest things that would help. I would feel more comfortable taking a diagnosis from the consultant who has done physical assessments, reviewed my medical history, completed and reviewed my MRI scan and spoke with me in depth about my symptoms.

Since you have tried many different medications and they are not especially helpful, I wonder if you have tried other things, such as what I have listed in the post I linked to. Not saying the answer for you is there, but just wondering if you have experimented with those sorts of things.

Medication is not always the answer, and I firmly believe that it is never the entire answer, because so many different factors enter into the causes and therefore the management of fibromyalgia.
You are correct to take your cue from a medical professional as to whether or not you have fibro.

It's probably true that the pain won't go away..........but I like to take an approach of remembering always that we cannot predict the future and you never know what might help in the future. I keep experimenting, myself. If something comes into my awareness that I have not tried, I will try it. Not referring to medication here, but other things like a kind or level of exercise or movement, a natural treatment, and so on.

I don't believe that, even if the pain doesn't go away, a person with fibro cannot have a good life. I think it's all in how you manage it for yourself and how you handle it.

I have a physical anomaly in my lower spine that causes me a lot of problems, and it is the source of a great deal of my back pain. But it is not the source of everything, and I do have fibro. So, even though I don't have the exact same back issue you do I can relate to what you are dealing with. One thing I keep in mind is that we don't always know what is affecting what in our bodies, since every tiny thing actually affects everything else. The fibro probably makes the back pain you and I experience worse, and the physical issue in the spine makes the fibro worse. It can also cause something to hurt elsewhere, and pain elsewhere that is caused by fibro can make muscles tense or move differently, making something else hurt.

The bottom line is that no one who is not a medical professional can tell you with any accuracy what is going on in you, and even the professionals are not by any means always accurate or certain when it comes to fibromyalgia.

 

[JayCS]

To meet the criteria, you must have pain in at least four of these five areas:
well I would fail on that test

But John, apart from local pains, don't you have a full body ache in all muscles of all 4 limbs and more, esp. when you overdo it?
I think I've always assumed that we all have that. Altho I can remember having to emphasize that this ache is a dull severe pain when (I think it was @sunkacola) asked, and much more of a problem than any local pains.
So what do you others get when you overdo it? Pain (I call it "ache") all over, or varied local pains?

Also I've decided to count any pains / pain areas however else I can explain it - e.g. my jaw problems, which have 8 causes that I've clearly identified, none of them being "fibro". I could also say none of my local pains are 'fibro', they are various kinds of muscle and bone problems. But I think the way we feel the pain there is still part of fibro. (Whether we think of it as a central sensitization issue like you, or like me say that there's a lot going wrong in our tissue which can't yet be measured.)
So this is actually coming back to the original question - I think it's a matter of interpretation whether the pain issuing from your and @Gnd97's spinal problems are also fibro or not at all. Because neither the criteria, nor studies, nor researchers nor docs will or can give a clear single answer on that. Anything any of us says about this is our interpretation, it's not a rule anyone has put down anywhere.

 

[Auriel]

Hi Gnd, first of all welcome to the forum , second, I don't like that drs attitude (I don't know, but I find him quite cold) but "if" he is right and it "is" fibro they at the moment it is a forever thing, (but it is a manageable thing, that doesn't mean it doesn't effect the day and night though) have a test with foods or drinks see if certain ones exacerbate it , also we need proper sleep (if you've got the chronic fatigue with it, it is challenging) I hope they're gonna offer you some kind of pain management, I can't deal with it without my gabapentin (some use lyrica), some manage without anything!, (which I'd love to do, but the pain is too much) I'm also concerned I've not read any blood tests you might have been given (for maybe autoimmune disorder, thyroid function) I'm hoping they've given them to you!, fibro is very painful and it can bring you down, but it just about making changes and accepting the way things are, take care, message if you're fed up or anything

 

[JamieMarc]

My pain is constant and chronic for me as well, and never goes away. The best I can do is manage it and that management involves so very many things. It involves adding things to your life and subtracting things from your life. Everyone is unique in their experience of pain and the causes of their pain. The first step is accepting the pain and the second is identifying, over the course of months or years, what triggers your pain, what helps to relieve your pain and how your mental health is connected to your pain. Joining this group was the first major step I took in my journey with fibromyalgia, and from there I have learned so much, applied so much of the advice and suggestions to my own life, and proactively started observing and examining the various causes of pain in my life as well as experimenting with umpteen ways to manage it and even at times eliminate it. If you haven't already, @sunkacola as a terrific starter thread that is a must read. Start there and please stay with us. Turn on your notifications and make reviewing the forum a daily habit. Hugs!

 

[johnsalmon]

I think it's a matter of interpretation whether the pain issuing from your and @Gnd97's spinal problems are also fibro or not at all.

@Gnd97 if I remember stated that there was pinching of the nerve at the site of t7/t8 and there was indeed bulging of the disk - this of course is not fibromyalgia this is straight spinal problems. Pain is seen depending on the person,due to age I suffer general pain in the body but that is not fibromyalgia - my fibromyalgia pain is totally different hard to explain just what I feel during flares but what she describes is the pain I have known for years and is highly likely coming from conditions in the spine this is why I suggested she try a tens machine. I am not downgrading @Gnd97 pain I do feel for @Gnd97 and would like to get relief for @Gnd97

 

[Harpy]

Hi For clarity the bulging disc is located between T7/T8 and isn’t showing and major nerve compression. So the consultant advised although it may be causing some pain in that area during certain movements, it’s not the cause for anything else

Your symptoms are VERY similar to mine. I can relate to a lot of what you’ve said. I get an infection in my right T6/7 1.40 pm today and in my Right T7/8 tomorrow, same time. These two areas have bulging discs and a significant ossification . I also have DISH in the most part of my T spine.
Don’t give up, just keep taking a day at a time. Keep asking questions, as you never know , what works for me won’t work for you but hey the next tip, advice ect from the next person may help you.

 

[Gnd97]

To meet the criteria, you must have pain in at least four of these five areas:
Left upper region, including shoulder, arm or jaw
Right upper region, including shoulder, arm or jaw
Left lower region, including hip, buttock or leg
Right lower region, including hip, buttock or leg
Axial region, which includes neck, back, chest or abdomen

Hi John. Although you have been quite consistent with advising me I do not have fibromyalgia, despite a diagnose following lots of treatment for 15 years including both medication and alternative - again please see my original post whereby I had to complete a criteria questionnaire. I experience all of the above pains and more symptoms - hence why I have been diagnosed. As I’ve explained previously, I have been told the bulging disc is not the sole cause of all of my pain. Despite this you seem quite persistent with re-diagnosing me. I do now unfortunately regret posting on this forum for some reassurance and support.

 

[Gnd97]

Hi thank you for your continuous helpful advice. I have tried alternative remedies over the years ie. Tens machine. Exercise. Physio. Acupuncture. Massage. I still struggle. I have no been referred to a fibro specialised pain management clinic x

 

[Gnd97]

Hello. Thank you for your response I have been on several medications since the age of 12 and tried many treatments including physio, acupuncture, exercise, massage, tens machine etc. I may have not worded the original post correctly - the doctor was lovely and very understanding and comforting when talking me through the diagnosis. I currently take gabapentin and cocodamol which doesn’t touch the sides. So my GP is contacting me today To discuss further medication. I have also been referred to a fibro specialist pain management team x

 

[Gnd97]

Hi John. Yet again, following an MRI and assessments - I have some pain in my back from a bulging disc. The MAK consultant has confirmed this is not the cause of all my pain. I am feeling quite deflated with you batting away what I know about my own body.

 

[johnsalmon]

Despite this you seem quite persistent with re-diagnosing me

I am not re-diagnosing you -

"
o meet the criteria, you must have pain in at least four of these five areas:
Left upper region, including shoulder, arm or jaw
Right upper region, including shoulder, arm or jaw
Left lower region, including hip, buttock or leg
Right lower region, including hip, buttock or leg
Axial region, which includes neck, back, chest or abdomen"

is now right or wrong and I would assume that in time it will change again as it did from the target points

as I sated I am not re-diagnosing you but the pains you describe do not appear to be within the current scope of fibromyalgia
and I use the words "current scope " as the medical field as far as fibromyalgia is changing as more research is being done.

"posting on this forum for some reassurance and support."
I do not think anyone on the forum has not tried to give your reassurance and support

if your doctor is sure that it is fibromyalgia and the medication is not working as you clearly point out then ask him to change it - currently I am on lyrica which is excellent but does not stop all flares (for me) so she has put me on a trail with another medication to see if that improves my quality of live if it does not then no doubt she will try another - it s a hit and miss situation with fibromyalgia I doubt that any one on the forum has gone into a doctors surgery and come out with a cure for the pain on the first time.

The codiene you are taking has little effect on fibromyalgia but it does have good effect on spinal but you may need to increase the dosage and thus you might become hooked on it over time. There are patches to replace codeine that are as effective but you have a lower chance of being addicted . but again these have basically no effect on fibromyalgia - the source and cause of the pain in both are different

 

[sunkacola]

I am feeling quite deflated with you batting away what I know about my own body.

Just so you know, there is a button you can hit that will allow you to "ignore" any member on this forum. That way you will no longer see their posts. If you are feeling deflated by reading someone's posts, this would be a good solution for you so that you can stay on the forum and get support and information from those members with whom you do want to communicate. Just a suggestion. I would hate to see you leave because of what one person is saying.

 

[Auriel]

I hope you do keep posting for support and venting and whatever else you wanna post about ️