Experiencing deep pain in my shoulder joint.

Thank you Sabrina! I will let you know how my nerve block goes . Hope your doctor's appointments went well. I wanted to ask you do you take Magnesium an d if so how much, also B complex vitamins. Thanks so much for being there for me and others as well. Your help is greatly appreciated,! God bless you!

Hi Debbie,

Yep; I do take magnesium. My everyday consumption is between 900 and 1800mg daily; that includes the 400mg that comes in my multivitamin. 400mg is the recommended daily allowance and I'm sure that does just fine for many "normal" individuals. I just found early on that I had my choice between taking muscle relaxers or magnesium for my cramping and muscles spasms, and especially after I started taking Duloxetine (not compatible with taking cyclobenzaprine-flexeril) it just occurred to me that magnesium does that same job for pregnant women who have metabolic toxemia of late pregnancy, so why not give 15 cents-worth of mag a try instead? Don't know if it works for everyone, but it sure worked for me. And incidentally, cut back significantly on the number of anxiety/panic attacks, especially in the middle of the night. I had labs done after about a year of taking this amount of mag. and I was interested to see that my mag level, along with all the other stuff like sodium and calcium, etc., was absolutely within normal range. The reason intake on a given day varies for me is that when I was having the really bad cramping, etc., I just titrated up on mag to manage symptoms. I know from 2-1/2 years of dealing with these issues that if I go without mag supplementation for 36 hours I'm in a world of hurt, which is relieved again within 1-2 hours after taking the mag. I take about 2 times the RDA of calcium, and between 3-5 times the RDA of Vitamin C. But that's just me. CRPS patients over time are more prone to osteoporosis for several reasons such as disuse of a limb and changes in circulation that turn your skin reddish or purple but leave your deep tissues and bones starved for nutrients at times. And as CRPS affects immune function and is immune-mediated, extra C helps to keep me as well as I can be; prior to taking the extra C, I got every little bug that went around during cold and flu season, and now that's pretty rare for me.

Regarding B vitamins: I take the house Women's multivitamin from my local healthfood  section at my neighborhood grocery store, as it is inexpensive and has no crappy stuff in it like artificial colors. Also, it's vegetarian, and so am I. It has a lot of folic acid and B-12, since there's a lot of evidence we often don't get enough of these in our daily diet. Aside from that, the profile of B's is 1-2 times the RDA for adults. The only thing I would caution you about is that there is such a thing as Vitamin B-6 toxicity; it causes, of all things, a type of peripheral neuropathy. Most MVI's only have the RDA of B-6 as a result.  I've read that bodybuilders get this type of toxicity a lot more than others, as they tend to supplement like crazy, and can forget to check the B-6 content in say, their smoothie powder and whatnot, so they don't realize how much they're getting from all their combined sources. And this is a bit alarming, but it seems manufacturers tend to load up MVI's with more of the cheapest B vitamins, less of the more expensive ones. Except for B-6, it doesn't matter; you will just end up with very expensive urine, as water-soluble B's get excreted pretty efficiently.

Most vitamins are better absorbed with a meal. If you take calcium, take some protein with it, and something that's on the acidic side (yogurt, lemon juice, orange juice, vinegar) helps to make it more available for your system to absorb. That's just chemistry 101. Yes; we make digestive acid, but we don't make protein to go with it, and some foods can actually neutralize stomach acid, as can antacids, of course. So don't take calcium with an antacid, either, and you'll be good

My attitude is that if I can get good results from stuff in my kitchen, I would rather do that than take more meds or get more treatments. Part of that is no doubt because I'm still embroiled in the nitty-gritty of a work comp claim over this injury, and am not exactly a trusting soul when it comes to the folks at the insurance co.. I never want to rely on them to cover the cost of my medication refills: I'd be worried every month that they'd pull the rug out from under me, and worry is not exactly therapeutic. So I only take the meds I can easily afford out of pocket. But that's just me.

Prayers coming your way for best possible outcome on this stellate ganglion block!

Hi Sabrina, thanks again for your advice. I am currently not taking any bitamins except 500 mg. vitamin C and vitamin D I take 2 to 3 of these. I also try to remember to take 2 fish oil capsules. I am going to get the chelated magnesium and a super B complex vitamins. I will look into calcium tabs as well. I really haven't been good about taking vitamins but I really need to start to help with this new condition I'm dealing with now. I talked yo my nurse practitioner friend who works with adults tonight snout how to take my Gabapentin. She suggested I continue to take 300 mg. in the morning. Take 300 mg. at about 5:00 and 600mg at 10:00. Instead of taking 600mg. at 6:00 and 300mg. at 10:00. She also told me I could take 600mg. of Ibuprofen before going to bed to help if I get break through pain. I so appreciate you passing on what works for you . It helps me to be more knowledgeable of what might work for me. I also just recently decided to be vegetarian. I am trying to make some really healthy smoothies. I had one tonight that had coconut milk, spinich,kale, pineapple and banana. It was quite good. And last night I made some lentil soup with carrots and potatoes, onion and garlic. It was quite tasty. I will definitely make it again. I hope your doctor's visit went well and that your having a good week. Thanks again for your help. It's so good to have a friend who knows what your going through and can relate to it personally. Have a great night. Talk to you soon. Take care!

Hi Sabrina, I got the nerve block yesterday and I don't think it did anything for me. I had such high hopes that it would really help but it didn't. My pain doctor had told me weeks before that usually the relief comes immediately after the injection. He had told me people usually feel a warm sensation in your arm which is the normal blood flow returning to the area. I didn't feel anything. In fact after he said he was done I asked him so when will it start working? He said I needed to give it time. I knew in my heart that it probably was not going to work. Last night at about 8:30 the burning in my arm felt worse than it had before. I took 400mg Ibuprofen and then at 10;00 took the Gabapentin. I will not get another one as I feel it did not work. I read an article that if it doesn't work it usually means the CRPS has progressed too far and it is best to get it in the first few months. I have only had this for 5 months and it is already too late I guess. My shoulder pain is the main thing that us bothering me. I read an article that a steroid injection helped with this in women. I think I am going to ask my doctor to authorize for this. In the meantime I am going to do my shoulder exercises three times a day to get more movement back. While I am feeling very disappointed I know I have to keep a positive attitude as being negative just makes things worse. Hope you are doing well today. Just thought I would share what my experience is with you. Praying for you and myself that God will heal and restore us to health one day. Stay strong and may God bless you!

Hi Debbie,

I'm sorry but not entirely surprised to hear that the nerve block was unsuccessful. Unfortunately, sympathetic nerve blocks are most successful in very early cases of CRPS, when the pain is most often sympathetically maintained (SMP). After the first few months, most cases have spread of the pain impulses to the parasympathetic nervous system (SIP, or sympathetically-independent pain). Hence, any block of the sympathetic nerves alone is not gonna cut the mustard. At least the doctor didn't tell you it can't be CRPS if the block didn't work for you; there are patients out there right now that are getting that line from their healthcare providers. Poor things.

So glad you have an NP on your side; that is great!! And good for you, looking to make dietary and supplement interventions that can only help to support your immune response overall.

I have wondered for a long time now if  CRPS isn't a spiritual trial as well as a physical one, that prepares us for an as-yet unspecified challenge. I base this in part on faith, but also on physiology and neurology: The plastic changes in the brain over time due to CRPS are somewhat similar to those seen in persons with autism spectrum disorders; this includes heightening of one or more senses for many people, and changes in neural connectivity.

The longer I live with this thing, the more I can see that it's not 100% bad... Some odd but beautiful blessings come with it, not the least of which is increased gratitude, and renewed compassion as well as fundamental belief in basic goodness.

And I say this as someone who had the experience early on in this diagnosis, of having one of my supervisors actually make a call out to the insurance folks to tell them I was faking this injury. I don't know for sure that this call delayed timely diagnosis and treatment for me, but it would be logical to assume it may have been a factor. I used to be so, so angry about this, but now I understand this person's actions were fear-based, and simply, human. I know God is in charge, and has a plan for me. I pray for this supervisor now, because if I were in that person's place, I would have a hard time forgiving myself for making that call. I forgive that person. And with forgiveness, comes joy!

Hi Sabrina, hope your doing well. Last night I had quite a bit if pain. I slept on our recliner sofa in the living room instead of our bed. I ended up taking 400mg. of Ibuprofen at about 1:00 in the morning. I finally fell asleep after an hour or so. I have some good news though my daughter and son in law came over to visit today. They bought me some cannibus cookies to try for the pain. They are called Snicker doodle cookie bites they have 10mg of THC in them . Sabrina I am not and have never been into drugs. My faith background does not approve of any kind if drug use ,but I had such a bad night and my daughter insisted that I at least try it. So I did and guess what it took my pain away!! It did not make me loopy it just relaxed me and then gradually the pain went away. I am so grateful just to have a break from the pain. It has been about 6 hrs and I am now feeling like the pain is starting to come back gradually. I am not going to start taking this all the time but if I am having bad pain I know I have an option. I felt normal again!! I couldn't believe it would work so well. I feel guilty about taking it but also so grateful to know there is something out there that really works for the pain. I also think it is probably safer to use this than some of the pharmacutical drugs they have to offer us. I know alot of my friends will not approve but they are not the ones experiencing the kind of pain I am. Hope this is helpful to you and anyone else reading this. Please keep in touch and stay positive and strong.

Dear Debbie,

I have never tried cannabis for my CRPS, as in Illinois, up until very recently it was pretty iffy to be a licensed healthcare professional and using a cannabis product at the same time. As a hospice nurse, over the last few years I was working, I saw an ever-increasing number of patients who were already using cannabis in some form for intractable pain of cancer or end-stage heart disease complications; it also seemed to work on the anxiety and shortness of breath many of these heart patients had, as well as their pain.

God bless your kids!!! As a nurse, I can tell you that in the medical community, cannabis products are becoming more commonly prescribed all the time. It's processed in such a way that the vast majority of the "high"-generating substance is out, but the neuro-modulatory stuff stays in.

God made cannabis. It was humans with bad intent that gave it a bad name. And just because the U.S. is a little behind the times in getting around to taking advantage of cannabis' good qualities for people with stubborn pain conditions doesn't mean you need to be! It gets prescribed all the time now for toddlers with severe, intractable seizures, even!

My mother in law has mild vascular dementia and end-stage cardiac disease, as well as severe osteoporosis. A family member brought her some cannabis oil, and just a few drops make it so she can sleep comfortably at night, and it reduces her episodes of increased confusion, panic and anxiety. And unlike her former pain meds, it doesn't render her constipated to the point of misery, either.

CRPS patients definitely qualify for cannabis as part of pain management, even here in slow-poke Illinois.

I like your idea about investigating steroids... There is a lot of evidence in the literature that in the first 3 up to 8 months after injury, this can be very helpful to some people. That seems to be because of the inflammatory nature of CRPS. That said, after about the 8 month mark, it doesn't seem as helpful.

I would be looking to get evaluated by an experienced pain/anesthesiology doctor, with an eye toward getting a Ketamine neuro-modulatory IV.

There's a lot to be said for investigating multiple avenues for treatment and pain relief simultaneously, so I'm glad to know that in some cases you can facilitate by paying out of pocket, instead of having to wait for an insurance company to authorize a referral. This is what I did, and even though we are still paying off that credit card bill ( ) it was so worth it to move things along. The problem with just attacking this sequentially (ie: First, checking out nerve blocks, then steroid injections, and then maybe Ketamine IV's or scrambler therapy, etc.) is that while you are doing this, your CRPS is becoming more entrenched in your nervous system, and so becomes more challenging to treat.

I have Dr. Jay Joshi and Dr. Tim Lubenow on my team, both of whom are believers in the benefits of Ketamine infusions for CRPS. Out in your neck of the woods, you undoubtedly have a lot of very experienced CRPS physicians: Dr. Joshua Prager comes to mind, as he has been giving the infusions for a number of years as well. He is also all over YouTube, so you can see the surgicenter environment, listen to patients talk about the infusions, and get a feel for Dr. Prager knowing what he's talking about.

I know it sounds crazy to say that you need a doctor who knows what he/she is talking about, but there are these free-standing pain management clinics popping up all over the place where people are getting infusions of short duration, or even bolus injections, of Ketamine while sitting up in a chair in a sort of closet at the MD/DO office, without constant monitoring, and it's cash-only, and maybe the Ketamine is actually given by the nurse instead of the doctor. That's because Ketamine isn't closely regulated in many states, so everybody wants to get in on the act. Even doctors who aren't board certified in pain management or anesthesiology. You don't want those guys/gals taking care of you: Ketamine in the hands of a qualified specialist is very safe generally speaking, but in the hands of a generalist, maybe not so much.

Praying you feel better soon! Keep me posted!

Hi Sabrina, I think you read my mind!! I just got off the phone a little while ago with Dr. Josh Prager's office. I was gathering information about what I would need to get together to get a consultation with him. He doesn't take any insurance's so it would be on a cash basis,no surprise there. They said I would have to get a referral letter from my primary care physician and send all the disks with x-rays and the op report. They would review the information I send them and then they will decide wether to accept me as a patient or not. It is 750.00 fir the consultation which isn't bad I don't think. And 195,.00 fir each time you see him. The infusions are very expensive 2,000 dollars per infusion. The man on the phone told me they give you 4 infusions to start at a higher doseage than most pain doctors are using. They are infused over your hrs. It will be expensive but will be well worth it as there are no doctor's that are really knowledgeable about CRPS in the Inland Empire. I called my primary care physician's thus morning and asked if my doctor would write a referral letter for me and send it to Dr. Prayers office. In the meantime I am also calling the Meyers Pain clinic where they do the Calmare therapy if I can still be seen as I had a nerve block a week ago but was unsuccessful . I would like to do this first and then see Dr. Prager. I figure it doesn't hurt to try to get things lined up to see Dr. Prager in the future. I have eaten the cookies a total of three times the first time I ate it I think I got the most relief , I still an getting relief but maybe my body is getting used to it already. It took about 2 hrs. to take effect last night before I went to bed. I haven't tried the gummies my daughter gave me yet. She says they are stronger than the cookies. I will probably try them thus weekend if I need to. Yesterday my pain level was low and today isn't too bad either. Maybe it us helping, who knows,? Thank you for writing back. It's really great to talk to someone who is so knowledgeable about CRPS. I will keep in touch with you and let you know what happens. Praying your having a good day today. Keep in touch! I think there is a way to send private messages on this sight. I will look into that soon.