[rory47]

Hi. I am new these boards. This is going to be a long post. I appreciate your reading this, and hopefully someone can help me. Although I have a great pcp, my ins Co is not approving a neuro or pm at this time. Although I do take meds, I feel like something is really wrong and I need help. I'm not sure where to post this, so I started here.

I have had neck and back pain for 17 yrs due to 2 mva's. Many years of treatment, no different. Diagnosed with cdd and herniated disks, lots of headaches and very stiff sore neck.

In 1997 started getting horrible abdominal pain, right under sternum and into back. Went to er 6 to 8 times in 2 years, it was so bad. Dr thought gallbladder, except testing said otherwise. Finally took it out, finding no stones in or around it. Continued with the attacks
although some were not as bad as others. Usually they are about half of what they once were and lasted much shorter than before. For the last 15 years, I get these pains about 5 times a year. Just learned to live with it.

In 2008 I fell very hard, landing on only my right hand. So hard I thought I broke my hand at first. Within days my bicep tendon area was very sore and tender whether moving my arm or not. Also very limited from in that arm. MRI showed numerous tears. Had my first surgery march 2009. No different. Another surgery June 2009. Since my bicep tendon was hurting, Dr did a bicep tenodesis. No different. Another surgery in Feb 2011. Started pt next day and continued for 8 months. No different. Just learned to live with it.

Dec 2011 woke up day after Xmas with a sharp shooting pain in my right arm. Besides my normal bicep tendon pain, I now had sharp pain in shoulder blade, chest arm pit and down arm. Felt like nerve pain. Finally saw neuro in march and pain still there. Hadn't gone away even for a minute. Surgery in April 2012. Had acdf c5-6, 6-7. About 2 wks before surgery my pain went slightly down, but still painful. Dr was hopeful sharp pains would be gone, but my bicep pain would still be there. When I woke up, the sharp shooting pain was gone, but the exact pain was now in my other arm, the left. Until now I had never had any pain on the left. Dr told me that night it was normal. I made sure he understood it was in my other arm now. At my follow ups, same thing. Said it was normal. By te time I saw a new Dr for a second opinion, the sharp pain down my forearm was mostly gone, but still had the sharp pains in shoulder blade, chest and armpit area. Dr said I had cervical stenosis and radiculopathy. Said I would have to deal with it.

Was dealing with it when in July of 2013 I woke with the very same bicep tendon, hurting whether I moved it or not. The very same 2-3 inch area as my other arm. So now my pains are exactly the same in both arms, and both arms have the same rom, which is not very much.

In November I started getting pains in my rear and my legs. Mostly right side. Also deep aching in both hips

Day after Xmas I woke up with sharp jabbing pains everywhere. Both arms, from the shoulder blades to my forearms, and my wrists and fingers. Both legs, in the groin and thigh, both sides of the rear, my ankles and the tops of my feet. Even in my jaw. I have also been getting my stomach pains just about every day since I woke with all these pains. Also, I have been having burning feeling in both legs off and on. Also, I have been more exhausted than ever before. I can hardly get off my couch. I am so tired, yet I can't sleep because I hurt so bad. I can't imagine what will happen next. I hurt everywhere.

Does anyone have any ideas?

[Jomar]

What parts of your body were injured in the MVA's? C spine/whiplash/upper body??

I don't know if you have ever heard of thoracic outlet syndrome (TOS) for short, but some drs may call it by other names also..
Some of the symptoms can overlap with RSD, but it might be good to read about TOS also..
http://neurotalk.psychcentral.com/forum24.html

the sticky threads on both forums are good for crash course info & symptoms descriptions.

[rory47]

Originally Posted by Jo*mar

What parts of your body were injured in the MVA's? C spine/whiplash/upper body??

I don't know if you have ever heard of thoracic outlet syndrome (TOS) for short, but some drs may call it by other names also..
Some of the symptoms can overlap with RSD, but it might be good to read about TOS also..

the sticky threads on both forums are good for crash course info & symptoms descriptions.

Thanks for the reply. My car accidents were in 96 and 99. I was diagnosed with cervical disk disease, and bulging cervical disks. I do remember tslking to my shoulder dr about tos. He said it wasnt. Also, the day before I woke up with all of my new shooting sharp pains everywhere in my body, I had been holding my nephew at Xmas. He is about 30 lbs. I did carry him for about 5 min,and pick him up a few other times. That was the only thing different than what I do any other day. The exhaustion I am feeling is crazy. All I want or can do is to lay down, but like I said before I can't sleep for long without the pain waking me. It feels like I have throbbing toothaches throughout my body.

Thanks for any ideas or suggestions

[rory47]

Originally Posted by Jo*mar

What parts of your body were injured in the MVA's? C spine/whiplash/upper body??

I don't know if you have ever heard of thoracic outlet syndrome (TOS) for short, but some drs may call it by other names also..
Some of the symptoms can overlap with RSD, but it might be good to read

the sticky threads on both forums are good for crash course info & symptoms descriptions.

Thank you for your reply. My car accidents were in 96 and 99, and involved the neck, although I have had a very stiff and sore lower back for many years. Back then, I was diagnosed with cervical disk disease, and 4 buldging disks.

I don't know if this is relevant, but on Xmas, the day before I woke with most of my body having the sharp jabbing pains, I had carried my baby nephew who is around 30 lbs.

I also forgot to mention that in the last week I have been getting burning like sensations in different areas of both legs. It seems to only affect the skin, and only last for about 5 seconds at a time. I also forgot to say that for the last couple of years I have had one foot and one hand colder than the other. The difference is very noticeable.

I had neve r heard of rsd until recently. After years of this, I asked my pcp if he has
any ideas. He did say that maybe rsd or an auto immune disease.

Thanks for any insight

[Brambledog]

Hi Rory

This is a long tough road you've been on, I hope your docs can help you more very soon, you must be so frustrated after so long without real answers or effective treatment...

Until your later post I was thinking 'probably not CRPS' because you didn't mention any temperature changes or skin sensations, etc - but then you did OK, so it could be CRPS....but it could also be several other neuropathic problems, and only a neuro doc can really tell you that. It's crazy that they won't approve one - appeal to your regular doc to back you up in asking to see one. As a patient, you have the right to appropriate care - and when your symptoms are neurological, you need to see a neurologist.

In the meantime, I would suggest you keep a pain and symptom diary. Doctors love it, because it is a massive source of information for them, and also shows that you are a proactive patient. Each day, note your pain level out of ten in the morning, afternoon and evening. Also note key symptoms, visual (ie a rash, odd skin colour) and those felt (ie burning sensation, stabbing pain) and where they occur. Note anything major in your life that day, like exercise or a family event, or a stress like a sleepless night. If you get any visual symptoms at all, photograph them (or get someone else to) and show them to your doctor. It's easy sometimes for a doctor to dismiss what we say during a consult, but if there is evidence, they have something definite to go on...sad but true.

It's also a good idea to overhaul your diet and see whether you could be giving your body more nutrients and minerals to help it fight whatever is going on. I'm not trying to imply your diet is rubbish lol, just that we all get into habits and not all of those are good when it comes to food (I know this one too well!). You don't need to go mad, but things like reducing sugars and processed food, and eating more fruits and veg can really boost your energy and reduce some of the stress on your body's systems. Taking vitamin C every day is a good plan too, because it's something it's easy for us to not get enough of, and it is vital for our immune system - its also been proven to reduce the risk of CRPS spread (even if you don't know if you've got it).

Unperfumed Epsom salts in a warm bath also might be worth a try. They can ease some CRPS symptoms when used regularly, and again magnesium is vital to our bodies and something we don't normally get enough of.

You mentioned you take some meds - are any of them specifically for these stabbing pains? Have they tried you on something like Gabapentin or amitriptyline? Both are tried often on CRPS as they can reduce the nerve signals causing the pain. I take Lyrica which is a kind of cousin to Gabapentin.

For now you don't know exactly what's causing all this, and only a doctor can tell you for sure. In the meantime though, read up on CRPS from reputable sites (Wikipedia, RSDhope, etc) and try to rationally consider your own symptoms. It's very dangerous trying to diagnose yourself, because our minds are odd things, and it's perfectly possible (and happens often) to read about something and then have your body almost head in that direction. On the other hand, if your docs are failing you, you do sometimes need to take charge of the situation and try to figure things out. It's a delicate balance. Just don't overdo it and stress yourself out with some of the more terrifying conditions you will probably come across...steer clear of photographs especially!

Really really good luck. I hope you can catch a break soon and find some answers and treatment. You deserve better than this. If necessary, you might have to consider trying a new doctor and getting a fresh perspective.

Bram.

[rory47]

Thank you for your response. This has been a very frustrating few years. When I woke up from my neck surgery with the pain now in my other arm, I couldn't believe it. And its just gotten worse. I am so lethargic, and pain everywhere, stabbing and deep achy pain. Until about 2 months ago I was walking 2 miles a day, and I tend to eat a pretty balanced diet for the most part. Of course, I could make some improvements.

I do take gabapentin, nortriptyline, and have tried lyrica. I feel like they help just a little, not as much as I would like. But I do take pain meds also, and have taken these for about 12 years due to my neck issues and now due to all of this other stuff. So most of the time its tolerable, but this latest incident since Xmas feels different. And I do take magnesium, b vitamins besides my normal vitamins, fish oil. Also I was diagnosed with hypothroidism, although I am not overweight. I feel like I was in pretty good health until the last few years.

I am at the point where I might go back to the surgeon who did my 3 shoulder surgeries. Maybe he will have an idea, and it might make him feel better that whatever was wrong with my right arm is now happening to my left arm. He felt really bad he couldn't make the right arm better. We developed a pretty good relationship after 3 years together!

Thanks

[rory47]

Hi
I wanted to also say that my pcp has been wonderful. He has put in so many referral requests trying to get me to a neurologist, but they are not cooperating! He knows something is wrong, and he does his best for me. Maybe we will finally wear down that ins Co!
Thank you

[Brambledog]

I'm glad you have a good PCP, that's a wonderful and rare thing... Sounds like a good idea to see that shoulder surgeon if you have a good relationship - even if he isn't sure on CRPS, he might be willing to consider it and read up a little to give you his opinion.

Well done on the diet and exercise thing. You sound like me on that score! Up until about three years ago, I was very active, lots of sport, ate well etc. didn't see this coming at all... Oh well. It's scary how quickly you lose your conditioning though with something like CRPS. Keep exercising (or just moving!) as much as you can - once your muscles start to go soft, other things can start being a problem too. Core strength in particular is key - I'm desperately trying to regain some of mine!!

Take care and have a better day.

Bram.

[rory47]

Thanks Brambledog for all of your ideas. I really appreciate them! I normally enjoy exercising, but these last few years has been challenging to say the least. I havent really done too much in the last 2 months but I am going to start my walking again. We will see how that goes. My arms are so bad that when I'm on the treadmill I hang on to the sides because they hurt to have hanging at my sides as well as the movement from walking. Better then nothing I suppose!!!

Last night I had the burning in my leg, and then for the first time I felt it in my face. It felt like a spot about the size of a half dollar or so, and only lasted about 5 seconds. That was kind of scary.

Thanks again for your thoughts.