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Chronic neck and shoulder pain

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Posted 10/28/2012 11:35 PM (GMT 0)

Hi all, this is my first post so apologies for the length.

I would really apperciate any advice/assistance that anyone may be able to offer, as I really don't know how much longer I can carry on like this for. cry

Post Edited (SarahA) : 12/13/2012 3:03:04 PM (GMT-7)

Posted 10/29/2012 1:23 AM (GMT 0)
Sarah, I am so sorry you are having to go through all of this. Neurologists, for all of their advances, still don't know how some of this works. They could be looking in entirely the wrong place. And yes, pain can "move".

That's why they call it "practicing" medicine, as the old joke goes.

I'm in the process right now of writing a letter to my doctor, specifically describing my symptoms, what has been done before, how I was feeling before, what has changed during the course of this, and using a pain scale to demonstrate as exactly as I can what is going on. The pain scale I'm using is 0=no pain to 10=kicked by a horse. Something I can compare it to. The pain scales they have in use now are kind of hard to use, so I am using the most painful thing that's happened to me as my 10 in hopes he will understand.

Maybe writing it down will be easier than explaining it verbally. I know I get sidetracked when I get in to see my doc. And explain how this is affecting your quality of life. That is as important as the pain.

But try not to diagnose yourself. Give them all of the information you can, written down if you have to, and let them do their work. If they have something written to refer to, maybe, just maybe, they will remember a previous case they read about in med school and something will make sense.

Hope this helps. Keep the faith.
Posted 10/29/2012 2:14 AM (GMT 0)
Sarah,

Welcome to HW and the CP forum.... and no worries about the lengths of your posts, lol - that was nothing!! (if you've ever seen some of my long-winded posts, you'd know what a LONG post is - haha). Seriously, though.... I'm sorry for the issues that bring you here, though :( especially since you are so young....

I'm sorry you are struggling to figure out *what* is going on and getting a clear diagnosis. Most of us here have walked in those shoes - and it can be so frustrating! Especially when you don't have a doctor who is strongly in your corner, so to speak.

What type of doctors have you seen for this? Have you seen a neurologist for the headaches. That's one thought.

What treatments have you had so far - in terms of medications, injections and so forth?

As LivingColor suggested - I'm a big advocate of writing EVERYTHING down. (I tend to freeze up and forget everything when I go to a new doctor.... but I write really well - and this has helped me greatly on several occasions).

The biggest encouragement I can give you is this: only "you" are in your body and know what's going on.... how much pain you are in.... and how much it's affecting your life. Don't let anyone try to tell you that it's in your head, you know? What I've learned on my health/pain journey - is that you have to advocate for yourself - and really let a doctor know what kind of impact it is having on everything (school, personal life, whatever).

It may take going to another doctor for a second opinion.... or whatever.... but you deserve a doctor that will listen to you, believe you - and help you figure out what's going on and how to appropriately treat you.

Hope you'll keep posting and letting others support you! --Tina
Posted 10/29/2012 4:54 AM (GMT 0)
Sarah Welcome to Healing Well Chronic Pain Forum, your post has hit a real nerve with me, I was once told by an Army Orthopedic surgeon, that I was malingering! I hate that word with a passion, it is just a way to label a patient that they don't want to take any more time with, to find out what is going on. For me it was over six weeks after I had seen that orthopedic surgeon, that they finally found out I had a massive herniated disk in my neck and had to have emergency surgery! So I get a little aggitated when I hear that a person is called that. There are allot of things that could be going on, and it might not have anything to do with your neck or upper spine, but again it could be. I would suggest going to a University Hospital or medical school, and try to get evaluated there. If you live close to Mayo Clinic or some other place like that, try going there. You are young, and it is often easy to use ( that "M" word) when infact that should only be used after they have done a thorough check of you, and just the test you have had is not a thorough check. As I have said there are other things that could be causing your problems other than your neck.

I do wish you well and I hope you continue to come here and post and keep us informed on how you are doing and what you find out. Remember you are not alone, with your pain. When you come here you have people who care and can empathize with you, and we will always listen, and give you what advice we can, and support. I would definitely keep on your doctors, and try seeing a speciality clinic or something. And certainly keep a log of your symptoms, and any changes in them. You have been given allot of good sound advice from the other here.
Good Luck to you

White Beard
Posted 10/29/2012 12:01 PM (GMT 0)
Hi Sarah,

I'm sorry your still having pain from your accident.

I had an accident 7 years ago this past August. The day of the accident I had an instant headache and my left shoulder hurt and my left hand was swollen. A few months later my middle and lower back started to hurt and the pain came more in my right shoulder and arm than my left. Can pain move around, I sure think so. As it was explained to me I felt the pain more in the left side because it was more painful than the right at that given point in time. As the right side flared it masked the left.

In the first 2 years I saw neurosurgoen's, ortho's, PT the list goes on and on. It was until I went to PM that he decided to do a bone scan and found inflammation in the facet joints in my neck. Apparently its very common with whiplash injuries.

Have you seen a neurologist that specializes in headaches? 7+ years and I still have the headache from that accident. Most days its an annoyance but it can be unbearable. Have they checked to see if you have TMJ? Whiplash injuries have a high rate of causing TMJ. I never had it before but it was found after the accident. For me it took several seesions of craniosacral therapy to get rid of it. But at least for me it dropped the level of pain from my headaches. And for me having RF's every 6 months gets rid of part of the headaches also.

And I too like everyone else right everything down before I get to my appointment. My memory has gone to crap since the accident. And in the beginning I'd leave my appointment and remember questions I forgot to ask.

All I can recommend is trying to get into one of the teaching hospitals.
Posted 10/30/2012 11:20 PM (GMT 0)
If the neuro is looking at traumatic brain injury, it can and does happen at any age, and can definitely happen in a car accident. It can happen at varying degrees and in different areas of the brain. It happens in football games with guys wearing helmets. I've seen it happen with a simple trip and fall. And the symptoms for it can cover a very wide range.

And no, it may not impair the cognitive function of your brain (the part that "thinks") but it sure can impair other parts. Inside the 'ol melon there is still a bit of a mystery, despite what advances have been made. As an extreme example, see Stephen Hawking.

And the Mayo Clinics are in Minnesota, Arizona, and Florida. Specialty hospitals. Darn good ones too.

edit - I felt like I needed to edit this as it may have been a bit blunt. My and my family's medical background tends to do that. We talk like that. I am also assuming you are in the US?

The point I was trying to make is, find the cause, so the help can be delivered. The cause may not be good news, but pinpointing it is a major step forward, even if it is something you may not want to hear. I do hope this works out well for you, and look forward to hearing good news about it.
Posted 11/1/2012 5:14 AM (GMT 0)
Sarah as LivingColor said Mayo Clinics are in Minnesota and Arizona, and Florida, Mayo Clinic in Minnesota, is the original and main facility, the facilities in Arizona and Florida are satelite clinics. Mayo Clinic is a huge facility and they are a big research hospital, in fact the one in Minnesota has two hugh hospitals and massive building that is just for doctors appointments and research and tests. They are a teaching facility, much like any University hospital connected with a medical school. The reason I suggest that you go to someplace like this, is they have the capability of finding out, what the problem is. It doesn't necessarily mean that they will, but the chances are allot better, and you are definitely not as likely to be blown off and told your malingering!

By the way my youngest daughter who just turned 33 is a nurse at Mayo Clinic in Minnesota. It is worth going there just to see the facility, the buildings are all connected by underground tunnels, and they are lined with shops. That way you don't have to endure the cold and snowy weather that they have up there! It is a pretty neat place, but any type of place like this would be good. You might want to Google some places and see what they have available.

Good Luck to you Sarah, and please keep us informed on how you are doing,

White Beard

White Beard
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