Experiencing deep pain in my shoulder joint.
Posted , 5 users are following.
Hi I want to know if anyone that has CRPS in the wrist has had pain deep in the shoulder joint. The pain is so bad I cannot raise my arm up very far or it really is very painful. Also I am having muscel spasms in my forarm. If you do what can you recommend I do for it? I am in occupational therapy now for my wrist. The wrist is fine butt shoulder is killing me. Thanks in advance for your response.
1 like, 31 replies
michelle13845 debbie70988
Posted
Hi Debbie. I don't have CRPS in my wrist but u do have it in my right foot/ankle but has spread to my hip and left foot. CRPS can spread...its an awful monster. I'm getting ready to do the SCS trial surgery as meds, physical therapy, and nerve blocks did not work for me.
debbie70988 michelle13845
Posted
I am so sorry you too are going bthrough this. I hope the SCS trial works for you. I have not had anything done as far as nerve blocks or Ketamine infusions . My pain doctor just sent in request for authorization for both so when I need them They will be set in place for me. I leaning toward the Ketamine infusion because I feel like it is spreading to my other arm already. I am experiencing needle like sticks in my right elbow. My pain doctor said if I have symptoms inore than one limb. He would recommend the Ketamine infusion as I would have to have multiple nerve blocks at that point. You will be in my prayers. Thank you for your response 😊.
Bluemart40 debbie70988
Posted
I have CRPS in my left forearm and wrist and ended up with a left frozen shoulder which as you describe is very painful. You should see your doctor and either have it confirmed via ultrasound or by a specialist musculoskeletal team. I had 3 steroid injections and now have about 70% movement in it.
Please get it sorted quickly as my CRPS spread across to my right limb and so has the frozen shoulder. I now am left with 70% mobility in my left and currently around 30% in my right. I am waiting for the steroid injection process to begin!
Please push your medical team hard to resolve it as in my experience the longer it is left the worse it gets and it spreads!
debbie70988 Bluemart40
Posted
Thank you so much for your reply. I have an appointment with my doctor next week. I will definitely tell him I need relief from this very painful pain in my shoulder. I can't believe how fast this CRPS is spreading. I have only had it for five months and it is already in my shoulder and neck area. How long have you had it? And how long did it take to spread to your shoulder. I hope you don't mind me asking that question. I am still in occupational therapy for my wrist but told my therapist my wrist is not hurting me but my shoulder sure is. He has been working with helping me with that some now but it is definitely getting worse. Thank you so much for sharing your experience!! Hope things get better for you. 😊
Bluemart40 debbie70988
Posted
Hi Debbie. My CRPS didn't spread to my shoulders ... the problem with them is Frozen Shoulder (adhesive capsulitis). It spreads though and very painful. I have had CRPS for 14 months now and it's spreading. I take Gabapentin, Tramadol and Amitriptyline. I have refused a nerve block as one Consultant warned me off it due to side effects. I have been referred to a specialist CRPS clinic here in the UK for their 2 week specialist care programme. Being assessed next week and after that will know if I have been accepted onto their programme. I hope you resolve your shoulder issue soon and I'm so sorry that you also have CRPS. Keep positive x
sabrina51474 debbie70988
Posted
Hi Debbie,
I'm a registered nurse with full-body CRPS, and because it took nearly 2 years to get the firm diagnosis I had to pretty much wing it in terms of managing my symptoms and maintaining safety, just based on my own research and what I knew already from caring for people with chronic illness and disability.
In terms of can your CRPS of the wrist be related to this severe shoulder pain? You betcha. I'm operating on the assumption that you haven't had a recent illness or injury that would be a more likely cause of the shoulder discomfort, needless to say. But having said this, here goes:
There are no "rules" regarding the spread of CRPS signs and symptoms. It's actually one of the more common patterns of spread to have distal pain, swelling, color changes, etc.(read: further away from your trunk) go up to a more proximal (closer to your trunk) location. Sounds crazy to people who have never seen it or heard of it, but in fact, this is easily explained by the inflammation of the distal body part being communicated by chemical messaging to your near-by nerve-endings, and from those local nerve endings, it travels to your central nervous system, and once it's in your central nervous system, it can go anywhere, and I do mean anywhere. This is called centralization of pain, or Central Sensitization. If no one has mentioned this to you, look it up so you can educate your PT and medical staff. It will save you a lot of time and frustration (Not to mention people looking at you like you are a nut-case!)
It's not unusual for CRPS patients to have a deep, aching pain in their joints as well as the more typical burning, neuropathic-type pain. Most CRPS patients experience small-fiber nerve loss; many doctors, even neurologists, were not trained to identify this on exam. There is a skin-punch biopsy procedure that can easily identify this once and for all, just FYI. Takes 15 minutes and they give you lidocaine before taking 2-3 little samples of your skin smaller than an eraser on a #2 pencil. Also FYI, regular nerve and muscle testing (EMG and NCV) do NOT test these small-fiber nerve endings; only large-fiber nerve endings which are seldom involved in CRPS.
Here are a few of the things that have helped me the most. I'm not a doctor, just an RN, so I can only tell you what works for me and why, but you need to check with your healthcare prescriber to make sure you have the go-ahead for any/all of this stuff, and/or prescription you need (for the Naltrexone or Ketamine); just know you need to advocate for, and educate yourself: There's a lot of ignorance out there, even now, regarding CRPS:
Ketamine infusions in the last few months for the pain and the central sensitization symptoms ( I was one who developed sensitivity to sound and light, and some digestive problems too), but I realize that for many CRPS patients, this is not where they want to go if they don't have extensive symptoms. And you may never have them; everyone is different!
Low-dose Naltrexone- Helps with burning pain and helps me to have less anxiety, sleep better at night. Also, cheap as dirt: I paid $16 for 3 months of this stuff. Not kidding.
Magnesium- About 3-4 times the RDA of Mag keeps my joint pain and episodic cramping of legs and hands under control.
Ditto extra Calcium and Vitamin D! FYI, the overwhelming majority of CRPS patients come up deficient in Vitamin D on lab testing. Go figure...
Extra Vitamin C daily, and even MORE Vit. C at the first sign of infection, or even the most minor of injuries, to prevent flares of your pain, etc..
A good multivitamin, just on principle.
Naproxen at bedtime and during the day if I need it: Really helps with the burning pain, bone and joint pain, and helps me get better sleep, too.
Ditto Benadryl. Not kidding. For the longest time, I had no idea why; I started taking it at bedtime for the side-effect of drowsiness: Turns out that it also suppresses inflammation, which CRPS patients have way, way too much of. If you like the way this works for you, you can add a non-drowsy anti-histamine during the day, too: Claritin and Allegra are just two of the more common over-the-counter ones of this class of drug that work the same way on inflammation. Pepcid is also an anti-histamine that some people get some inflammation relief from; it works on just a little bit different type of histamine than the other drugs, above. Histamines are a product of Mast cells; you will be hearing a lot more in the future about Mast cells and how they play in to the onset and spreading of CRPS and other diseases that are similar, such as Fibromyalgia, for instance. This is a hot research topic for pain scientists and neurologists right now.
And, I find that I crave good-quality fats in my diet; especially unrefined coconut oil, pasture-fed butter, and extra-virgin olive oil. Do they help? All I know is, if I go without for more than 36 hours, I'm in a world of (more) hurt. I still don't understand this completely, but I think it's about inflammation when all is said and done.
I hope some of this helps. Keep gently moving that shoulder unless your medical folks tell you not to, but make it slow and steady, don't force it... Forcing it would just be a brand-new trauma, and you need that like a hole in the head, right?
Wishing you the best. Don't hesitate to contact me again if I can answer any questions for you!
debbie70988 sabrina51474
Posted
Hi Sabrina, wow! Thank you so much for all the very detailed advise on things that might help I really really appreciate it! I am definitely going to try some of them,!! I have only had this a short time and U am already frustrated and have slot of aniety about it. I have started using meditation as a tool to help me relax. It really helps me. I currently am only taking Gabapentin. I take 300 mg. in the morning and 600,mg. at night as the pain always is worse at night. I take a muscel relaxant sometimes but not all the time. And once and awhile on bad days I take 400 to 800mg. of Ibuprofen. I try hard to only take 400mg. as I am afraid of doing damaged to my kidneys. I am going to see my physician next week to let him know what I am experiencing with my shoulder. I bought a tens unit and had been using it on my shoulder and neck area but have since stopped as it seemed to make my nerve pain increase alot!! since I started. I don't think this is common but that is the only thing I did that was different. Have you tried a tens unit? If so what was your experience? Thanks again for your reply. Praying that one day soon they will find a cure for this terrible syndrome. Take care of yourself !! And stay strong!
sabrina51474 debbie70988
Posted
Good morning!
Yes; I tried a TENS back around the time that I was recovering from knee surgery, for this "sprain that never healed". I never could get a bead on whether it helped or not; like you, I felt at times like it made the pain worse, at least in the immediate aftermath of treatment, but sometimes it was just neutral. As my CRPS/SFN symptoms spread, though, I became really sensitive to cold on my skin, and experienced the sticky pads of the TENS as way too cold for comfort, so that pretty much ended that for good. I've known other patients with more localized CRPS who did fine with TENS, though, and thought it was doing them some good... Not a miracle, by any means, but one tool in their CRPS tool box. Which reminds me: There is a Doc out at Brown University, Pradeep Chopra (he's all over YouTube), who talks about finding the things that give you 10% relief, and if you find 5 of those, you have a total of 50% relief, which is enough so you can get through your day and have pretty good quality of life.
I had a few patients with CRPS when I was a work comp case manager several years before I got it myself: One of the things (besides daily, uncontrolled pain and not enough sleep) that frustrated them the most was that no doctor or complementary/alternative therapy provider seemed to have a 100% cure-all for this thing. To my knowledge, and I have done a heck of a lot of data-mining over the last 2 years, there isn't a cure-all...Yet. But I'm betting more than one comes along in the next 5-10 years because researchers are going at this from so many different perspectives. So far, it seems like CRPS is going to turn out to be like a diagnosis of "cough" was back around 1900: Now we know that some coughs are from lung cancer, some are from emphysema, and some are from allergies, etc., but back in the day, doctors didn't have the tools to identify cause, so they just treated the symptom by giving you a bottle of cough syrup. Treatment for CRPS has been pretty much like that: Doctors didn't know exactly what was going on, so they treated the symptoms. And to this day, many of them treat the chronic pain of CRPS like they would acute pain; they want to do invasive stuff. This is effective in the first few weeks to months, but statistically, can have more risk than benefit for the patients that have had CRPS for a year, or many years.
CRPS is probably going to turn out to be a catch-all term for a bunch of disorders of the immune and neuro-inflammatory variety. That means there will be more than one "cure", based on the "type" of CRPS you present with. Sounds pretty wild, but remember that 15 years ago, there was no hard evidence that CRPS patients often have small-fiber nerve loss, and some doctors were still arguing that there was no evidence that CRPS existed as anything other than some sort of hysterical, psychiatric-type disorder (As in we were worrying or obsessing ourselves into burning pain and color changes of one or more body part. Ha!).
I never had a nerve block, not interested in any invasive procedure at this point, because to me it's just another trauma I don't need. There are STILL doctors out there who administer a sympathetic nerve block and then tell you if you didn't get relief from it, that whatever you have going on, it's not CRPS, because CRPS affects the sympathetic nerves only. This was disproved over a decade ago, but news in medicine (except among researchers) travels remarkably slowly. I wish I was kidding!
Also, Dr. Jay Joshi, my Ketamine MD, boy genius extraordinaire in Vernon Hills IL (board-certified in anesthesiology and pain medicine), says that because I have full-body symptoms, none of that stuff would be expected to work for me at this point. Except in very cold or erratic weather, I am generally able to function for 4-6 hours a day, at about 1/2 normal speed in my pre-CRPS life. I try to always have something to look forward to, and a project that I can work on at my own speed. This helps to keep depression, anxiety and boredom to a minimum. It's amazing the stuff you can get done, if you work it just a few minutes at a time! Finding a way to benefit other people with what you're doing is even better
Keep speaking out; keep educating the people around you about what's going on with the whole CRPS situation: You never know how and when that is going to cause an "Ah-hah!" moment for someone else, who then can advocate for someone else, who has these "mysterious" signs and symptoms and is being told their pain is all in their head... That they just want drugs, or whatever. My husband was in the ER last year with my MIL, and the lady in the bed right next to her was having an exacerbation of pain, and her husband was begging the nurses NOT to cover his wife's (Purple, swollen, freezing cold) feet. The ER staffers were looking at both of them like they were crazy people. My husband said: "She looks like a CRPS patient!", and then everybody looked at HIM like he was crazy... But if even one doctor or nurse Googled CRPS after that, if only to disprove it as a possibility... That's yet one more person who will be able to help CRPS patients and their families get the help they need in the future. Don't hesitate to contact me, in the event you're in the mood for more very wordy but well-meaning advice
Onward and upward! Wishing you best possible outcome on this journey!
debbie70988 sabrina51474
Posted
debbie70988
Posted
Hi Sabrina, Hope you don't mind me reaching out to you. I am having a bad night with pain. You said your a nurse and I was wondering how much Ibuprofen is safe to take a day. I try not to take more than 800mg. a day usually I only take 400mg. but the pain is getting worse. The only other medications I am taking is the Gabapentin 900mg. total. You said you take Naproxen I think that is counter indicated if I am on the Gabapentin. I need to find something to get me through the break through pain. I see my doctor on Thursday hope he can help me. I am going to ask him for a Rx for Naltrexone how many mg do you take? Also I will ask for something for the anxiety that grips me every once and awhile. I don't think I need it everyday but I might. The last two nights I haven't got much sleep because of the discomfort. Thank you so much for your input. It is greatly appreciated. Hope to talk to you soon. Take care and God bless.
sabrina51474 debbie70988
Posted
Hi Debbie,
So sorry to hear you're having a flare that's interfering with sleep; and yes, the anxiety can be a real bear, and just made all the worse by the insomnia... Hard to tell what comes first; the chicken or the egg, right? . And ofcourse, since even anxiety and insomnia make the pain worse, the whole situation rapidly deteriorates into you questioning your own sanity, and trying not to think about just how much worse you could feel on down the road a piece. FYI, per a pretty decent long-term study by Dr. Robert Schwartzman (last name may be spelled a little wonky) from 2012: Systemic Complications of Complex Regional Pain Syndrome, patients rate their overall pain only slightly higher at the 15-year mark than they did at the 2-3 year mark. Barring you taking up bungee-jumping or some other high-risk activity (as if!!
), chances are good you will be no more uncomfortable on average in 2030 than you are right now, so you have some space to get strategic on this thing while you wait for better meds and treatments to make themselves available.
Regarding your current pain and how to cope... Here are a few suggestions that you can consider. These are the sorts of strategies I frequently recommended to my CRPS and chronic pain clients in general:
1) Call the MD office today. Ask the nurse to check with the doctor if OK to ramp up on your Gabapentin today, so you can report to them on Thursday at your visit if the increase is working to help manage your pain better.
That will save you some time and them also, because if you wait to go in there to pose the question, they will likely increase your Gabapentin at that time anyway, and then you'd end up calling them in a few days afterward if it wasn't enough of an increase to make a difference. You have a lot of room to ramp up on your Gabapentin intake, as long as side effects don't make it a losing proposition; many people take twice the amount you're taking right now, on a daily basis, for years. It just so happens in my case, it made me really dizzy and caused weight gain, or I'd still be on it; it did a good job on the neuropathic pain, for sure.
2) Unless you have allergies or your MD office has told you NOT to do this, as long as you've got them on the phone anyhow, ask if OK to alternate Tylenol (Acetaminophen) and Motrin (Ibuprofen) every 4 hours until pain is better controlled. The average adult can take up to 3000 mg total Tylenol in 24 hours, and 1200 mg Ibuprofen total in 24 hours. Since that means you'd be taking 3 doses of each med, you could take 1000 mg Tylenol, and 4 hours later take 400 of Ibuprofen, and you just keep going like that. Then when you go in to the MD office, you have that info. for them too: How well this works for you as part of your flare-day protocol.
Don't let anybody give you any yang about how these two meds don't help with CRPS neuropathic pain; they're probably right as far as that goes, but these meds DO effectively target prostaglandin release, and in the case of Ibuprofen, directly target inflammation. This is just you going thru the back door rather than the front, in terms of getting to your pain and helping to neutralize it.
3) Ativan (lorazepam) is not only a pretty good anti-anxiety med (that will help you FALL asleep but is not so good at helping to KEEP you asleep, by the way), it also helps to relieve the inflammatory affects of Mast cell activation. This makes lorazepam another type of backdoor remedy, and one more tool in your pain kit. Ask for a low-dose (0.25-0.5 mg tab) prescription. Depending on what your state laws are like, you may have to wait until Thursday on this, and actually walk a script into your pharmacy.
4) If joint pain is part of what's keeping you up at night, you can try taking a good old-fashioned bath with Epsom salts in the tub. This is a safe and effective way to relieve inflammation, as generations of athletes can attest. Obviously, if you are not going to be safe getting in and out of the tub, this is maybe not a good plan at this time... You and your doctor know better than I what your particulars are.
5) Get out the Benadryl if not already done, and see if 25 mg. helps. If necessary, you can take one every 8 hours during flares, but it will at least initially, cause drowsiness. Talk to the nurse about this as well, as long as you have him/her on the phone at the MD office.
Narcotics do a generally crappy job on neuropathic pain. Now that we're in a nation-wide opioid crisis, most MD's don't even want to go there for chronic patients, but I'm saying this just in case. I've seen CRPS patients take the max of Vicodin every day for years on end, but I strongly suspect they're getting better symptom relief from the Tylenol part of this med than they are from the Hydrocodone part of it. And opioids in general lower your pain tolerance over time. This isn't a psychological/addictive phenomenon; it's an actual neuroplastic change in the way your central nervous system processes pain signaling. SOOOO not worth the time, expense, and risk!
And finally, a note on pain v. anxiety: A lot of CRPS patients and the healthcare staff that treats them will talk about this pain and anxiety thing in one of two ways; either they believe the anxiety most of us feel is the result of being in chronic pain, or else, that the pain itself is at least in part due to us being a very anxious bunch of patients. Recent research on Central Sensitization of pain reveals that it's not a chicken or the egg proposition: Both the pain and the anxiety are just two of the expected symptoms of an inflamed central nervous system. You see these and most of the other symptoms we come up with, in patients that sustained a traumatic brain injury, and that's because brain inflammation is brain inflammation is brain inflammation, no matter what the original cause, no matter what labels your healthcare providers put on you in terms of diagnoses, and no matter that in the case of CRPS it may not be an abrupt, one-time event but a gradual, insidious onset that just ends up the same way (like you often see in Fibromyalgia, for instance). In my case, it was a little of both: I had the mild signs and symptoms of CRPS just from my sprained knee to my toes, for about 4 months before my knee surgery for torn cartilage. After the surgery, it took less than 2 months for the signs and symptoms to spread to my entire body and the left side of my face. I'm obviously an extreme example of what can happen when the central nervous system becomes sensitized, but just goes to show that the central nervous system is the key to the whole process of spread of CRPS.
Hope at least a little of this rant is helpful to you. Keep me posted as needed! Wishing you a better night tonight. Don't know about you, but when the weather changes really rapidly, I feel a lot worse until it settles again. If not already done, make up a "flare" box, with your "flare" meds, and stuff you find comforting, maybe a favorite sweater, DVD, book, scent, love letter, photos... Whatever feeds your soul will also help you manage your discomfort better.
debbie70988 sabrina51474
Posted
Hi Sabrina, you are a godsend!! I will will call my doctor's office and ask them to increase my dosage. I think it will help. So I am not anywhere near the maximum amount right? And I agree with you weather changes do make it worse!! Especially when it gets cold it makes it much more painful. Before this all happened to me I was not taking anything except a vitamin once and a while. I just turned 62 in February I am not a spring chicken but people alwadys tell me I look like I'm in my early 40's . I even got asked to prove I could get the senior rate at the movies. Anyway I feel like this CRPS is going to age me fast!! I need to get the pain under control or I will go crazy. Thank you so very much for your help in my time of great need. I have a friend in occupational therapy that is also going through the same thing we call each other and talk and try to support each other. It really helps to be able to talk to someone that is going through the same thing.Thank you again!
debbie70988
Posted
Hi Sabrina, I saw my doctor this afternoon he is going to increase my Gabapentin dose by 300 mg. He told me to take one in the morning one at noon and two at night but I told him I was concerned that I would still wake up in pain because that is what I already was taking at night. I haven't been taking any at noon. . He then said I could take more at night if I wanted. I didn't really know what I wanted to do. I asked my husband and he suggested I take 600 mg. at 6.00 pm and then take 300mg at 10:00 pm and the other in the morning. So that is what I am going to do tonight, I'll see how it goes. I am very concerned as I am starting to experience needle like sensations in my right elbow area but that has been going on for awhile. After I broke my wrist I was wearing out that arm to compensate for the left also feeling spasms in that forearm. And occasionally needle like pricks in my legs. I really feel my mental state is making the CRPS spread faster. I wish I could cure my anxiousness but I seem to be spiraling downwards. I asked my doc about anxiety medication but he really doesn't want to put me on anything else that will make me drowsy He did say if we up the Gabapentin more and it doesn't help he might put me on Lyrica. In the meantime my pain doctor has put in for a nerve block authorization, but because I wanted IV sedation it is taking longer for them to get it authorized. They say sometimes getting the nerve block can stop the spreading, but I've also heard the opposite happening. I think tommorow I am going to call the pain clinic and tell them to forget the IV sedation and just get it authorized as soon as possible. We will see what happens with that. Sorry I am unloading all this on you. I am just frustrated and scared about this whole thing. Thanks for all your help!! I also asked about the Naltrexone he did not want to perscibe that at this time either. Hope you are doing well! Have a great night!!
sabrina51474 debbie70988
Posted
Hi Debbie,
Before I forget, just wanted to say I, also, am 62! Makes you wonder if there's not some more of us out there somewhere, too!
I hope you are getting a little more relief; I know what you mean about the anxiety just making everything harder: Sleep is problematic, and you're right that it can make the pain worse, too. But don't get down on yourself, somehow thinking that if only you were stronger you could ignore or overcome your anxiety. Anxiety isn't the thing that's getting in the way of pain relief and better sleep, per se, anxiety is just another almost universal symptom among CRPS and Centralized Pain sufferers, caused by exactly the same mechanisms as the pain and insomnia, namely, a generalized inflammatory response. I think of it a bit like sunburn: If you get a sunburn, your skin feels hot, hurts when touched, and is red. That's just sunburn for you. It wouldn't do any good at all to say: If only I could get rid of the redness part of this thing. You can't get rid of the redness, as it's part and parcel of the whole sunburn experience. It's not a matter of strength of character. The redness goes away when the sunburn itself heals up, and not before. So if you treat the pain and heat sensation with meds that make you feel more comfortable, the redness will go away too, eventually, without any highly-specific treatment for redness itself.
I am concerned for you because from what you say, your physician may be looking at your condition rather narrowly. I have no idea who he is or what his experience has been treating CRPS, but as I've said before, many of the older physicians have been treating CRPS for decades but are not aware that in the last decade, especially, there has been an explosion of research done on the physiology and immunology/inflammatory aspects of the condition.
I don't know where the doctor plans on injecting you, if you already have pain in your shoulder... Is he planning on a nerve block next to your spine? Or a stellate ganglion block, maybe?
Two things about that: First, if he's going to be injecting in an area that is already affected by your CRPS symptoms, it is unlikely to be as effective, as the whole idea is to do the injection between the central nervous system and the beginning of the area affected by the CRPS. An example would be, if you had the symptoms in your lower leg, but only below the hip, an injection to a nerve in the area of the lower back between the spinal cord and your hip, would be what most doctors would do. If the symptoms came to above the hip, though, injecting the lower back is probably not going to be effective.
The second thing is, as I mentioned before, many doctors still are going by what they learned years ago, that CRPS primarily, or even totally, is a problem with the sympathetic nervous system. I'm sure you've heard the older name for CRPS: RSD, or Reflex Sympathetic Dystrophy. Some doctors are still giving nerve blocks to a sympathetic nerve, expecting that if you really have CRPS, this should take care of the pain, at least for a while. But the problem is that whereas CRPS starts out as a problem with the sympathetic nervous system, it almost always spreads over time to include the parasympathetic nervous system, in which case the sympathetic nerve block will not be very effective, if at all. Some doctors believe still that if the sympathetic nerve block doesn't give the patient relief, that means that whatever they have going on it's not "really" CRPS. Or they tell you that because the nerve block failed to help you, there's really nothing more they can do for you.
When you look at the old literature on CRPS (say, back before 2000), you see a heck of a lot of "no one knows how or why it happens", or "nothing to be done for people whose symptoms don't resolve in the first year or so, except symptom management". We know SO much more now.
You doctor may not have any other patients on low-dose Naltrexone, and may not understand the utility of it for CRPS and similar pain conditions that eventually become centralized to a greater or lesser extent, in almost all long-term sufferers. This drug just reduces central inflammation in doses about 1/10 of the 50 mg opioid and alcohol-dependent patients take to help them stay off these substances.
But once again, unless a doctor has had the opportunity to update him/herself on the current research findings, they just don't know.
Don't know what part of the country you're in, or what your travel and insurance constraints are, but perhaps it's time to consider a second medical opinion.
One of the big problems in pain management for CRPS is that while your doctor is busy thinking up ways to make your pain more bearable, the clock is still ticking on the spread (centralization) of the condition. From what you have said, it sounds like you may have a (so far) mild spread of your symptoms to the opposite arm (called contralateral spread, often indicates centralization of the pain process). The injection the doctor is talking about doing for your most-affected arm isn't going to do a thing to stop the process of the spread if indeed you already have some symptoms in the opposite or some other limb.
Overall, the best-practice in CRPS is becoming NOT to do the invasive procedures doctors do for acute pain conditions (like recent motor vehicle trauma or falls, or end-stage cancer complications) because the invasive procedures over time can cause additional trauma, thereby making the CRPS worsen or even spread.
If you have a centralized pain process, you need to get treatment that targets your central nervous system (brain and/or spinal cord). This can be something as simple as anti-inflammatory medications, or as fancy as brain stimulation, and a lot of stuff in between... Like a Ketamine infusion.
As I've said before, I'm a nurse who had actually seen several cases of CRPS before I got the condition myself, and it STILL took 2 years to get a firm diagnosis and actual treatment (Not just meds to dull the pain and anxiety), because my doctors knew a lot about how to diagnose and treat CRPS back in the day, but in the now?? Not entirely. It's been a learning experience for all of us.
Check out the NIH Complex Regional Pain Syndrome Fact Sheet, online, if not already done. Mayo Clinic and RSD research foundation articles are thorough but some info. is frankly, outdated. Another good author is Anne Louise Oaklander, MD, PhD, though she gets technical at times.
Wishing you the best... Happy to bird-dog a list of 2nd opinion physicians for you in your geographical area (People who actually publish up-to-date articles on CRPS, etc., in the medical journals, that is).
Onward and upward!
sabrina51474 debbie70988
Posted
Forgot to add: If not already done, see the online presentations of Dr. Pradeep Chopra from Brown University, and Dr. Jay Joshi, from Vernon Hills, IL. If you just type their names into YouTube search, they pop up right away. There are many, many good slide shows and lectures from these guys on CRPS and the advances in the science behind the treatment of the condition!
debbie70988 sabrina51474
Posted
Hi Sabrina, Thank you for replying so quickly, that is so cool that we are the same age!! To answer some of your questions I live in Southern CA in the high desert. It's probably about an Hour and a half from L A. My primary doctor is not familiar with CRPS patients he admitted that to me he is probably in his 40's. His wife he told me yesterday is in pain management and is familiar with Ketamine infusions. He is not keen on those as he said he would only recommend that as a and I quote " A hail Mary option". On the other hand my pain doctor has already put in for Ketamine infusion therapy in case I need it. The nerve block I am getting us the Stellate Ganglion one.And I would be getting it fir my left arm where the original injury started. I am scheduled to get it next week. I just need a break even if it is for a little while for the pain. I know they say invasive procedures can make it soread but the way I see it it is already doing that and oreety fast. What do you think about Ketamine infusions,? Have you had any? This will be my next option if the nerve block dies not help. It's either that which U am not eager to rush into it paying for Calmare therapy which they offer in Long Beach CA. It will cost about 3,000 dollars but well worth it if it works, even with added booster treatments. The only thing that really scares me is I would have to get off the Gabapentin before the treatment as it interferes with the success of it. They said I could use lidocaine patches and Ibuprofen which I'm sure will not control the pain as much. Other than that it is being on more meds as time goes on. Looking forward to hearing from you soon. I took the extra 300mg. of Gabapentin last night it helped some but still felt some pain but I did not get up to heat the heating pad up in the microwave like I have been doing at 2:00 or 3:00 in the morning. Talk to you soon! Have a great day!
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sabrina51474 debbie70988
Posted
Hi Debbie,
Yes; I have had 6 Ketamine infusions in the last 6 months, and they have made a world of difference in terms of pretty much everything but the burning pain: I get maybe 20% overall relief from the burning between infusions. This may sound like it's not worth it, since I'm only truly pain-free for 12-48 hours after an infusion, but then the burning comes creeping back, especially in all 4 extremities: But in my case it's totally worth it. That's because I had crazy-fast spreading of symptoms/severe central sensitization that started right after my knee surgery, such that after two years with pretty spotty treatment, all my senses were wired up together into what amounted to a big ball of misery: Sound and light levels could make the pain so much worse. I was having eating, swallowing and stomach issues to the point where I had to run most of my fruits and vegetables thru a blender just to be able to digest them without gut pain and fear of bowel incontinence. I was having trouble with such severe startles, that if my husband or a neighbor came up behind me and I didn't notice them until they were right next to me, I would nearly black out, and my legs wouldn't hold me up for a few minutes after that. I felt like someone with a brain injury, and only realized later, that's exactly what I am; only in my case, the brain injury resulted from a massive inflammatory response to my knee surgery, on top of mild knee-to-toes CRPS signs and symptoms for 3 months or so prior to the surgery itself.. Ultimately, it didn't matter to my central nervous system whether the original insult was a fall off the roof onto my head, or a peripheral surgery; the end result was CNS inflammation either way. It was a totally crazy and debilitating way to live, and not surprisingly, I fell a couple of times. No severe injuries resulted, but I had to figure it was only a matter of time. So for me the central sensitization was the most distressing and debilitating thing, not the burning pain. Once I realized the burning pain was waxing and waning related to weather and temperature, activity and stress levels, etc., but hadn't really gotten any worse overall from year one to year three, I sort of just accepted it and planned my days accordingly. Incidentally, I trialed Lyrica at $440/month out of pocket, and it worked about as well as Ibuprofen for me... So at 1/100th the cost, I just went back to using Ibuprofen. But that's just me; I know a lot of patients who can't tolerate the Gabapentin, or Gabapentin quits working for them, get good utility from the Lyrica (Pregabalin). In the literature, it seems that a positive diagnosis of small fiber neuropathy is a predictor for who will do well on Gabapentin or Lyrica. I took Duloxetine for about 8 months the year after my injury/surgery... It quit working after a while, and I could have ramped up on the dose, but it was somewhat expensive ($130/month) at a time when the work comp insurance company was not of a mind that my condition had anything at all to do with the original work injury, so I was having to pay out of pocket, just as with the Lyrica situation. Additionally, the Duloxetine sure solved the chronic insomnia problem (As in I slept for 12-14 hours out of every 24!) But it made my breath and perspiration smell like I had died the previous week and no one sent me a copy of the memo. Even my cat didn't want to be anywhere near my face before I brushed my teeth after I got up, let alone my husband kissing me good morning! Also, I had basically quit sweating within a couple months of my surgery, but while on Duloxetine, I started sweating like a racehorse, but not always when you would expect: I could do some yard work on nice summer days, but whereas sometimes that would make me sweat, often times instead, I wouldn't start to sweat until I went indoors to the air-conditioning, or I'd get these goose-bumps all over the left side of my body and face, especially in bright sunlight or intense heat. I also started having dystonia, basically mega-cramping, in both legs/feet, but especially on the right side. Still don't entirely understand why. It was pretty crazy. I had a couple doctors suggest nerve blocks and spinal cord stimulators back in the day, but because my signs and symptoms spread so far, so fast, none of these options were viable for me within, literally, weeks after these doctors evaluated me in the fall of 2015. You can't do nerve blocks on someone whose symptoms have centralized and expect to get a good result, and it would take not one but TWO spinal cord stimulators to handle the full-body pain (One upper implant, one lower-spine implant. Ugh. And a direct pathway from the germ-filled outside world to your spinal cord and brain, so a relatively rare but very serious complication is meningitis). And NONE of the above help with the central sensitization symptoms anyhow, only the pain.
My Ketamine doctor/pain specialist says you just never know for sure what an individual patient is going to experience with the infusions. He's had people hold up a hand half-way thru their first infusion to say that their pain is gone... And indeed, it stays gone for weeks or even many months after a single infusion. He says there are other people like me, who say that it's not primarily affecting their pain in a huge way, but that it is amazingly helpful with the central sensitization symptoms, which for me, include the anxiety, memory problems, and panic/hopeless feelings, dizziness, digestive issues, bone and joint pain, crushing fatigue, any movement problems, etc.. And he's had a few people who told him it really didn't do much for them, but not many of these. And it's not a one size fits all in terms of dosing: I seem to do well on 60 mg/hr. for 4 hours, but another patient might need twice that dose, or do just fine with less than that.
For me, the majority of the really spectacular symptom relief happens in the first 3 weeks. After that, I can feel the CS symptoms creeping back, though slowly. We are expecting that over time, I will get more and longer relief between infusions (so the infusions will be further apart from each other in time), but it would have been better if the CS hadn't been allowed to just pretty much have its way with me for 2 years before we started Ketamine, that's for sure. Dr. Joshi says it's like the Ketamine is having to break up old, hard "concrete" (maladaptive changes in the structure and function of the central nervous system related to pain and inflammation over time) vs. having to get rid of "concrete" that's still soft.
Ketamine has been around for over 50 years, and is used world-wide for anesthesia. Unlike other drugs used for this purpose, and opioids too, Ketamine will not suppress your respirations, so barring allergy, it is quite safe for most people. I'm concerned that your physician is thinking of it as a "Hail Mary", as you can see from the above that once your pain process becomes centralized, the sooner you get Ketamine to reboot your central nervous system, the better.
Once again, I am just the poster-child for how bad CRPS can get after a surgery, and how fast it can happen; most patients will never experience this extreme of a course of their illness. But the principle remains the same in terms of how Central Sensitization needs to be treated.
Sounds like your pain specialist is pretty knowledgeable, so that's good. I don't have any personal experience with the scrambler-type treatments, nor do I know anybody who has been through that treatment modality. I understand the principle and I'm sure some patients get relief from it... I don't know at this point if there is a predictable subset of CRPS patients who get relief vs. a subset that can be reliably predicted NOT to respond to scrambler therapy, but I will keep researching the literature. Ketamine and scrambler-type treatments are both expensive, and many times insurance doesn't cover them, or doesn't pay much of the cost, if they cover at all.
Also, no hard and fast prohibition against taking Gabapentin while getting Ketamine infusions, to the best of my knowledge, but check with your pain specialist to know for sure on this.
Wishing you relief, and soon!
debbie70988 sabrina51474
Posted
Hi Sabrina , You have been through so much!! You are a strong woman!! I don't know if I could be as strong as you have been. It is only with God's help all things are possible. Phillipians 4:13. Thank you for sharing your story with me. I really appreciate it. This Thursday at 9:30 I will be getting the nerve block I will see how that goes. If that doesn't work I will consider Calmare therapy and then Ketamine infusions. I'll try the less invasive first . I would have tried the Calmare before nerve block but insurance is taking too long to let me know wether they will pay for the treatments., probably not but figured it's worth a try. I will pay for it myself if they do not approve it. I just need a break from the pain for awhile. It will be hard to go through the Calmare therapy as you have to go off the Gabapentin first. I asked if you could use lidocaine patches and Ibuprofen they said yes. I don't know if you can use anything else for pain but will find out. In any case I won't be able to pursue that until the nerve block wears off which could be weeks or months everyone is different. You said something about some people's brains shutting off after Ketamine infusions what exactly does that mean do they go into a comma or just a major fog?? That sounds really scary to me. Hope you continue to have relief with the Ketamine infusions. As far as the burning sensation that really does not bother me that much. It's the deep throbbing joint and muscel pain that gets to me. It's really painful sometimes. As I told you my doctor upped my Gabapentin doseage from 900mg to 1200mg it really didn't help that much still have about the same amount if pain. I guess I'll have to let him know next week, but since I am getting the nerve block I will probably go back to just taking the 900 mg. after that. I just want you to know You will be in my daily prayers for strength and healing. Sometimes it's not in our time schedule but God's that healing takes place. I know I haven't given up. I get knocked down but by the grace of God get back up. I will let you know how the nerve block goes and works for me. A little nervous about the whole thing but I am sure I will do fine. Please keep in touch hope you are having a great weekend with friends and family around you. Take care if yourself and I will talk to you soon,! Thanks again for everything!! God bless you,!
debbie70988 sabrina51474
Posted
Hi Sabrina I can't believe I messed up so bad on my last reply to you. Your going to think I am crazy. I thought you said when the people were getting their infusion they raised their hand and said their brain was gone!! Hence the question about them going into a comma or brain fog. I feel like an idiot so sorry. I have to laugh at myself lol.