I'm new...hello!

[mechanicwyfe]

So I decided to join this forum because I don't have any other answers for my chronic neck pain except fibromyalgia, which was told to me by my neurologist. I was seeing an orthopedic doctor for over a year and was getting steroid shots. They only help for a couple of weeks at a time. I then got a second opinion Ortho and they said I had a rotator cuff tear and it was my shoulder not my neck. I had shoulder surgery and again no change to my neck. I finally went to see a neurologist because I'm really getting frustrated of not getting an answers, and he said that it could be fibro. It never hit me before so I looked it up and the description of the neck pain going up your head and spots on your scalp are exactly what that fibro neck pain feels like. Always the left side. Its moved now....left center of the back of my neck up the left side of the back of my head. No one has answers. This is killing the quality of my life. I don't know what else to do.

 

[bbbarnard]

@mechanicwyfe
Hi, welcome!
The people in my home are settling down now, so I want to take this opportunity to say hello. The beginning of your journey sounds familiar to so many of us! We know something is not right, different, so we begin trying to find answers. It’s not unusual to try several doctors, several diagnoses, several of everything before you find some solid answers. Please don’t let the beginning of your journey discourage you.

I do not know if you have Fibromyalgia or not. You’re still seeing doctors and having tests and procedures. Whatever is wrong, I do hope you find answers soon. That you find comfort, health, and peace.

At the beginning of each journey like this one, it’s usual to have more questions than answers. Please try to find some solace in knowing you’re not alone. Whatever this turns out being, you are not alone in your pain, suffering, and questions.

Sometimes the medical field feels very impersonal. Like we are not looked at as a complete person. Only parts of us are examined at once. Then we move along. The feeling of camaraderie will come for you; no matter your illness, you are not alone. I’m very sorry that you are ill; that you’ve tried, but you’re not getting better yet.

Many of us have felt like something was “killing the quality of our life.”

I’ve had to re-examine what my life needs to be. I’ve had Fibro, Chronic Fatigue Syndrome, and several other illnesses for 45 years. My life hasn’t been what I thought it would be, but it is a life worth living. I have my Christian faith, my family, friends, and a career. I’ve just had to fight harder to achieve my goals. Some friends from high school and college are still close. Still care. Some friends that I’ve made over the years allowed me to be myself, even if myself had to be different than before I became ill. My immediate family has stayed close. One of my siblings understands parts of my illness, but two siblings cannot describe one (1) symptom of Fibro. So I stick with the ones who know me and my struggles, and I love on the ones that are ignorant. As for friends, I’m careful. I’d rather have a few friends who truly know me than many who think they know me. I long ago had to stop caring that some people just don’t get me; don’t understand; don’t even want to try.

I truly don’t know if I would or could understand my daughter who has Fibro, if I didn’t have it myself. So, if I have to have it, so that I know what her life is like, then so be it. I’d rather the connection than a great disconnection.

I hope you find answers about your own health.

I hope it’s not Fibromyalgia

But, if it is, you are not alone.

Fibromyalgia is not a death sentence, but it is a change in life.

There’s much for us to share and learn from each other. And, someday, the medical field will catch up with the things we already know.

If it’s nighttime where you are right now, get some rest. If it’s morning, think of a few good reasons why you should try to make the best of your life. Have hope. Have courage. Lean on others. Lean on us.

Truly, if I’ve made it this far, you can, too.

All the best. Keep in touch. BHB
@bbbarnard

 

[sunkacola]

So I decided to join this forum because I don't have any other answers for my chronic neck pain except fibromyalgia, which was told to me by my neurologist. I was seeing an orthopedic doctor for over a year and was getting steroid shots. They only help for a couple of weeks at a time. I then got a second opinion Ortho and they said I had a rotator cuff tear and it was my shoulder not my neck. I had shoulder surgery and again no change to my neck. I finally went to see a neurologist because I'm really getting frustrated of not getting an answers, and he said that it could be fibro. It never hit me before so I looked it up and the description of the neck pain going up your head and spots on your scalp are exactly what that fibro neck pain feels like. Always the left side. Its moved now....left center of the back of my neck up the left side of the back of my head. No one has answers. This is killing the quality of my life. I don't know what else to do.

Greetings, and welcome to the forum.

I am so sorry you are experiencing this, as it must be debilitating and awful for you!

Now, here's what I know:
In general, fibromyalgia is not diagnosed if the pain is in only one location, because one of the defining characteristics of fibro is that it causes widespread pain, both sides of the body, and upper and lower body.
Which, please understand, doesn't mean that you do not have fibromyalgia, only that what you are describing doesn't sound like the usual descriptions people have for fibro, which also comes with many other symptoms such as chronic fatigue and brain fog.

I think your best approach is to continue to investigate with your doctors what may be causing this problem in your neck. Could it be a pinched nerve, or a mis-alignment in your spine, which perhaps could be helped by chiropractic work? Have you had x-rays done on your neck and spine? If not, I recommend you ask your doctor about that, and also, if the x-rays do not show a definite answer, then an MRI of the area.

It is also possible perhaps that the steroid shots you were getting made the problem worse, and once all of that is completely out of your system it could feel better.

I am not a medical professional - none of us on this forum are - so we cannot offer any truly informed information about what is happening for you. But I encourage you not to allow yourself to think that this is fibromyalgia just yet, because fibromyalgia doesn't yet have any cur e, and there are other things that could be causing this problem which DO have cures. So, until you know for sure that this is not caused by one of the things that has effective treatment, please keep looking for the answer.

In the meantime, however, please feel totally welcome on this forum, because we are here to offer support and encouragement.

 

[mechanicwyfe]

Greetings, and welcome to the forum.

I am so sorry you are experiencing this, as it must be debilitating and awful for you!

Now, here's what I know:
In general, fibromyalgia is not diagnosed if the pain is in only one location, because one of the defining characteristics of fibro is that it causes widespread pain, both sides of the body, and upper and lower body.
Which, please understand, doesn't mean that you do not have fibromyalgia, only that what you are describing doesn't sound like the usual descriptions people have for fibro, which also comes with many other symptoms such as chronic fatigue and brain fog.

I think your best approach is to continue to investigate with your doctors what may be causing this problem in your neck. Could it be a pinched nerve, or a mis-alignment in your spine, which perhaps could be helped by chiropractic work? Have you had x-rays done on your neck and spine? If not, I recommend you ask your doctor about that, and also, if the x-rays do not show a definite answer, then an MRI of the area.

It is also possible perhaps that the steroid shots you were getting made the problem worse, and once all of that is completely out of your system it could feel better.

I am not a medical professional - none of us on this forum are - so we cannot offer any truly informed information about what is happening for you. But I encourage you not to allow yourself to think that this is fibromyalgia just yet, because fibromyalgia doesn't yet have any cur e, and there are other things that could be causing this problem which DO have cures. So, until you know for sure that this is not caused by one of the things that has effective treatment, please keep looking for the answer.

In the meantime, however, please feel totally welcome on this forum, because we are here to offer support and encouragement.

Ty for the welcome! I was actually advised not to go to a chiropractor per thr neurologist. The pain is also on the right side now. I've had x-rays and two MRI s. It showed bulging disc's but I was told that isn't the problem because they're not in an area where it would cause the pain. I also have daily headaches. The steroid shots may have made it worse. This had been going on since Oct 2022. The neurologist said that the next step would be pain management. I somewhat agree with that but that I don't think will tell me the root cause of the issue, but then maybe again it would.

 

[bbbarnard]

@mechanicwyfe
One thought at the moment, if you receive pain management, and can get good rest, you will be able to go through all the tests and doctors’ visits. You will be able to think more clearly. It’s okay to try not to hurt while you figure everything out. Just a thought—
All the best,
BHB
@bbbarnard

 

[sunkacola]

Ty for the welcome! I was actually advised not to go to a chiropractor per thr neurologist. The pain is also on the right side now. I've had x-rays and two MRI s. It showed bulging disc's but I was told that isn't the problem because they're not in an area where it would cause the pain. I also have daily headaches. The steroid shots may have made it worse. This had been going on since Oct 2022. The neurologist said that the next step would be pain management. I somewhat agree with that but that I don't think will tell me the root cause of the issue, but then maybe again it would.

Hmm. Well, of course I am not a doctor. But if you have bulging discs I think that can very easily be the source of your pain.

The thing is, our bodies are whole organisms. the parts are not separate from each other. And the central nervous system runs through the spine, and the spine basically is everything to the body. If you have a problem anywhere in your spine it can cause pain or other problems anywhere else in your body.

For instance, sciatic pain comes from the spine, but is felt running down the legs! Also, if something in your spine is off center, then other parts of your body will start to compensate for that, and this will throw them out of order and can cause pain in any area of the body. So for them to say the bugling discs couldn't be causing the pain in your neck seems ridiculous to me.

I suggest you consult with either a chiropractor or a spinal specialist about this. You don't need to have a chiropractic adjustment if that doesn't seem wise to you, but to have the effects that bulging discs can have on the whole body explained to you by a professional. I know from my own experience that the problems I have in my lower back have caused many other issues throughout my body.

As for pain management......what that means is pain medication. Usually those doctors are not in the business of ordering tests or doing any diagnostics at all, although there could be exceptions. What they do is prescribe medication. This can help, and at the same time be aware that not all medications work for everyone. It's possible that some will not be effective for you, and it's also possible to experience serious side effects with some of them. Caution in taking medications is always good, starting with small doses and working up to larger ones only if there is no effect. Many of us here, including myself, have been through a dozen or more medications and found none of them helpful. I hope that you have a bet ter experience than that.

 

[mechanicwyfe]

@mechanicwyfe
One thought at the moment, if you receive pain management, and can get good rest, you will be able to go through all the tests and doctors’ visits. You will be able to think more clearly. It’s okay to try not to hurt while you figure everything out. Just a thought—
All the best,
BHB
@bbbarnard

I forgot to mention I had 10 of the trigger points which I don't know is good enough to be diagnosed with fibro or not.....

 

[sunkacola]

I forgot to mention I had 10 of the trigger points which I don't know is good enough to be diagnosed with fibro or not.....

That "trigger point" test was thoroughly debunked over 20 years ago because it is useless for diagnosing fibromyalgia.

Any doctor who is still using it is woefully behind the times, and doesn't know much if anything about fibromyalgia. If that is what your doctor used to diagnose, I strongly recommend that you find yourself a doctor with more knowledge of this syndrome, and do so ASAP. Someone who is that uninformed might give you bad advice.

 

[Ian waxman]

So I decided to join this forum because I don't have any other answers for my chronic neck pain except fibromyalgia, which was told to me by my neurologist. I was seeing an orthopedic doctor for over a year and was getting steroid shots. They only help for a couple of weeks at a time. I then got a second opinion Ortho and they said I had a rotator cuff tear and it was my shoulder not my neck. I had shoulder surgery and again no change to my neck. I finally went to see a neurologist because I'm really getting frustrated of not getting an answers, and he said that it could be fibro. It never hit me before so I looked it up and the description of the neck pain going up your head and spots on your scalp are exactly what that fibro neck pain feels like. Always the left side. It’s moved now....left center of the back of my neck up the left side of the back of my head. No one has answers. This is killing the quality of my life. I don't know what else to do.

Hi!sorry for your horrendous neck pain.No two people are the same with fybro.you can have surgery and the pain is still there.have they mentioned athritis?are you getting any other fybro symptoms?I’ve had fybro for 30 years and took every med under the sun and seen docs and hospital pain clinics,x rays you name it.been hooked on fentanyl so fybro can really get a grip on you.i hope your discomfort you will get to the bottom of.you’ve come to the right place for friendly advice

 

[SBee]

@Ian waxman just wondering how you are at the moment with the fentanyl withdrawal? Think I remember you saying you had a pretty good gp which helps.

 

[Ian waxman]

@Ian waxman just wondering how you are at the moment with the fentanyl withdrawal? Think I remember you saying you had a pretty good gp which helps.

Hi!thanx for replying.i have completely withdrawn from fentanyl and it was hell.diarrhoea,upset stomach,chronic headache,feeling reely anxious,headache like you’ve never known.just feeling like I could end it all.i’ve never felt so much symptoms in my life.messaged the doctors who put me on duloxetine.they are wank.i have more stomach trouble than ever.do not take duloxetine i don’t know why they recommend it.i feel absolutely terrible and taking diazepam but my whole body wants to shut down.no use ringing docs they don’t care just think duloxetine is a winner and it isnt!currently taking diazepam,tramadol and inuprofen but i feel awful.i will be going back to docs but i feel they have had enough of me.i’ve been getting terrible stomach trouble.they just dont care!i might as well take the meds ive got and suffer

 

[sunkacola]

@Ian waxman , sorry to hear that you are still having so much trouble. But you deserve a huge congratulations for coming off the fentanyl. I know from what you have said that it was hell. Good for you for sticking it out!!

I agree with you about the duloxetine! It gave me terrible side effects, and did absolutely nothing for the pain. Although, even if it had stopped the pain I couldn't have taken it because the side effects were absolutely unbearable. I would never recommend that drug to anyone. I think diazepam, tramadol, and ibuprofen are a lot safer.

 

[kkat]

Have you ever been diagnosed with any form of autism and ADHD might be something to look into for more answers that a doctor won't

 

[sunkacola]

Have you ever been diagnosed with any form of autism and ADHD might be something to look into for more answers that a doctor won't

Who are you asking?

 

[SBee]

@Ian waxman I can only echo @sunkacola you have always shown such honesty in your own personal struggle with living with fibro and the impact various medications have made on you. Fortunately I have never had to ease off from such a strong med as you have. For what its worth, your success at doing so may well help someone else needing to do the same. Just sorry it comes at such a bad expense for you personally.

Initially duloxetine was advised as the best option for me. I did a little research and decided against it, but to try amitriptyline, with tramadol as a potential back up plan. So far the amitriptyline seems to be enough, combined with other meds I need to take for other conditions.
As always I wish you well, and genuinely sorry its so bloody tough for you atm. Take care