[hula77]

I am overwhelmed and exhausted and have nowhere else to turn... I don't even know if any of these thigns are related, it just seems a never-ending battle. I'm including all the details because maybe someone has some insight or can put the peices together or help point me in the right direction. I've been fighting with neck/shoulder/right arm pain for the past two years.

2005 I got pregnant with my son, after 3 year battle with infertility. 8 weeks after my son was born, I found out I was pregnant again. They were born 11 months apart, so you do the math Relatively healthy second pregnancy, but the first I did have some major issues with pre-eclampsia. Both babes are very healthy. I was pregnant for almost 18 months straight, which was not kind to my body.

In 2009 I got Mono very badly, ended up hospitalized and then got shingles. Painful, but nothing as bad as what was to come. About two weeks after the shingles broke and started to go away, I had a very odd symptom of the right side of my face becoming paralyzed. Three different docs tried steroids, various meds and tons of tests. They thought maybe bells palsey but it wasn't definitive. It mainly affected the muscle that pulled my right eye out, so for about 6 weeks I had crossed-vision. Eventually, it just went away and my horrible primary doc only had "well, let's just hope it doesn't come back" to say. Nothing showed up on multiple MRIs or in blood tests. They did think maybe Myasthenia Gravis, but I don't produce that antibody (though you don't have to, to have MG).

I was relatively healthy for the following 8-9 months, except that it seemed I had major immune issues. I caught anything the kids caught, if anyone in the office was even remotely ill I would catch it within a day. I even caught things that my friends kid's had, without being exposed to the kids, just their non-sick parents.

I started having the shoulder blade pain about 2-3 years ago, I've lost count. After lots of PT, nothing showed up on X-rays so we did an MRI. One doc said he saw nothing, but a spine doc said he saw a "potentially" damaged disc at C5-C6, in that it lost some of it's mass, but maybe only 20%. 2 doctors say yes they see it, 2 say no. They all see bone spurs and "arthritis" (can you even see that on an MRI?) in my shoulders and neck. The pain is downright unbearable sometimes. I've done multiple injections of steroids and pain releiving drugs straight at the nerve roots. They would help a little, but never completely. In Oct 2011, I saw another doc who decided it was carpal tunnel and medial nerve entrapment. Surgery, of course, and while that took away a lot of the sensitivity and all of the "tingly/pin-prick" feelings, it didn't take away all the pain.

They've basically put me on a rotation at the pain management clinic. Every 30 days, I go back and get more narcotics. I hate them. Tramadol has been helpful, because I don't get the "high" feeling and I can work... but it's starting to not work now. I've gone all the way up to dilaudid, and back down to tramadol with nucynta when it gets really bad. It never takes things away completely, but I've pretty much compeltely resolved that it's never going to go away 100%. I was on topamax for about 2 weeks and it was wonderful. All my pain went away... but I turned into a box of rocks who ate & drank nothing for those two weeks. MAJOR brain fog, which scares me because I have two little kids to take care of. So, off topamax, back to tramadol and nucynta. My primary care doc thinks fybromyalgia, because topamax worked so well. Pain management/spine doc disagrees.

I'm at my wits end. I'm in so much pain. It stems from my right shoulder blade (around the cusp of it, closes to my shoulder) and that seems to be the epicenter of pain. Goes majorly into my shoulder and down my right arm. Elbow and wrist are major pain points, and right hand aches so bad too. I have good days and bad days. Today is a bad day. Pain is basically all over my upper body from my bossom up. Headaches are regular. Tramadol not touching it.

Please help. Any thoughts or pointers or a place to start reading? I've googled my brains out and I just want a definitive answer. I've considered seeing a rheumatologist, that's the only specialist I haven't seen so far.

Sorry this is so long. I'm just hurting so bad and am so tired of just having pills thrown at me.
Thanks in advance,
-Kaura
31 y.o. mom to DS7 & DD8 in St. Louis.

[mrsD]

Welcome to NeuroTalk:

Sounds like lots of suffering to me.

Have you had Vit D and B12 tested? Low D will lead to more easily contracting infectious diseases. Fixing it will give better resistance to infectious exposures.

Have you had thyroid tested? After babies are born, sometimes that is when the thyroid tests low.

Were your shingles on the arm or neck?

Autoimmune disease can present after pregnancies too.

But I am thinking you strained your arm lifting little children so much. Your lifestyle would have you doing that alot. I threw my back out once lifting my son when he was 8mos old, and had to call hubby to come home. Some women lift their children alot...
I knew a gal who lifted her 5 yr old boy alot and she threw out a knee removing him from the car once! After I threw out my back, I didn't lift my son much when he became a good walker.
We just went slowly everywhere. At home he climbed into my lap on the couch or in bed with me for closeness. (I was 35 then and my back could only take so much then).

Spurs do show on MRIs.

Have you tried icing the shoulder? Have you had herpes titres drawn (blood work) to see if they are still high? Do NSAIDs help at all?

I'd ask on our Myasthenia Gravis forum too. Just to see what they think of your eye issue.

There are Lidoderm patches, for post herpetic neuralgia, and with your diagnosis your insurance should pay for them. Have you tried them on the shoulder? Placement might be tricky, and you might have to experiment with them to find your sweet spot.

[hula77]

Originally Posted by mrsD

Welcome to NeuroTalk:

Sounds like lots of suffering to me.

Have you had Vit D and B12 tested? Low D will lead to more easily contracting infectious diseases. Fixing it will give better resistance to infectious exposures.

Have you had thyroid tested? After babies are born, sometimes that is when the thyroid tests low.

Were your shingles on the arm or neck?

Autoimmune disease can present after pregnancies too.

But I am thinking you strained your arm lifting little children so much. Your lifestyle would have you doing that alot. I threw my back out once lifting my son when he was 8mos old, and had to call hubby to come home. Some women lift their children alot...
I knew a gal who lifted her 5 yr old boy alot and she threw out a knee removing him from the car once! After I threw out my back, I didn't lift my son much when he became a good walker.
We just went slowly everywhere. At home he climbed into my lap on the couch or in be with me for closeness. (I was 35 then and my back could only take so much then).

Spurs do show on MRIs.

Have you tried icing the shoulder? Have you had herpes titres drawn (blood work) to see if they are still high? Do NSAIDs help at all?

I'd ask on our Myasthenia Gravis forum too. Just to see what they think of your eye issue.

There are Lidoderm patches, for post herpetic neuralgia, and with your diagnosis your insurance should pay for them. Have you tried them on the shoulder? Placement might be tricky, and you might have to experiment with them to find your sweet spot.

I have had all the bloodwork done, all things are normal. Thyroid, while on the verge, is still normal.

It's likely a lot of this happened due to having two young kids together. For two years I would carry them both up the stairs to our house together (husband works a lot, home alone often)... one on each arm was often the way I had to go as they were both very active little buggers. I couldn't leave one alone to take them up one at a time without duct-taping the one to the wall... lol

I've done heat and ice... both seem to help here and there. My joints really seem to be painful lately... almost all my joints I swear ache. Lots of electrical shocks all over. Lots of ticks and jumps.

I see the NP at the pain mgmt clinic tomorrow. I'll ask about the patches. Usually she just refills my narcotics, and sometimes trigger point injections help a little. She did lidocaine/novacaine one once all over my shoulder blade and up the side of my neck and for about 3 days I felt AWESOME.

Thanks for the advice!!! I appreciate so much that you care enough about a stranger to offer advice. I just dont want to be in pain anymore. This sucks.
-Kaura

[hula77]

Anyone else have any thoughts?

[Susanne C.]

Originally Posted by hula77

Anyone else have any thoughts?

It is very hard for most of us to improve on Mrs. D's advice. She is a wealth of accurate, not anecdotal, information. It is also hard and not particularly helpful in the short run, but may be very important to come to terms with in the long run: many patients with PN never get a firm diagnosis, there is often no treatment, and palliative care is about it for pain and disability.

That doesn't mean that you are in this camp. Many things you mentioned could point to possible causes that are treatable. It takes a bit of detective work to tease out the information that applies to you.

I hurt my back badly when we adopted an infant who didn't sleep though the night for five years. He was tiny, but carrying him, swaying, rocking, and walking the floor with him resulted in two ruptured discs and surgery. While that kind of back problem and surgery can cause PN, mine is hereditary, so you can also have two things going on at once, or more than two.

Your suffering sounds intense. Good pain management is a must, and there are combinations which are better than others. I hope that you get an actual diagnosis soon and are able to recover. I still have three kids at home. I cannot imagine having this, raising children, and working.