Can't sleep, can't sit. Suffering in miserable excruciating pain. I am burning up alive. Migraine type headache as well. Can't have covers on me above my waist. Shivering as well. I'm at the end of my rope. Lidocaine patches taped onto my face. Covered in them. No relief. This is why I don't want to share my experience. There are no comforting words. Legs are cramping nonstop. Hurts to stand, hurts to even lay on the only side I can. So sick of this.
I'm so very very sorry. It sounds so bad.
Do you mind if I pray for you?
Have you looked into Low Dose Naltrexone? Integrative medicine doctors are more likely to prescribe it.
My sister in law who has Lupus says it helps her pain and other symptoms like nothing else.
Where do you live? Do you have access to CBD? It helps with pain too and doesn't get you high. CBD will help with the cramping/spasming as well. The green edible really helped me with the cramping/spasming, sleep, pain and appetite.
Gentle hugs,
Tracy
Thank you. Yes, I've tried that as well. Will look into naltrexone. I don't mind prayer at all. Talk to God everyday begging. I feel like a modern day Job.
Look into Low Dose Naltrexone, it has to be a very low dose. Only drawback is you can't be taking any type of opiod to take Low Dose Naltrexone.
CBD works best if it contains a small amount of THC.
Yep, sometimes I wonder how Job got through it. Unending faith, I guess.
I'm praying for you.
Tracy
Morning jimmy. Have you tried lidocaine cream. I find it helps better than patch on face and neck.
Have you tried Epsom salt baths or basin. I have to have bath twice a day.
Or I use a basin and add Epsom salts. I bath feet I. Warm water. I have cold version of crps in most my body. My arms do go very hot during night usually if I ate something g bad.
Example gluten or Diet Coke things like that. I never had issue with food before crps started.
I use basin also to bath wrists and arms. The salts hep unlock the spasm.
I take magnesium in tablet form too each day.
So sorry to hear you are suffering like this... I have full-body CRPS as the result of a knee sprain and subsequent surgery on the knee, nearly 3 years ago. By the time I found a doctor who knew what was happening (several others thought I was just a head case/needed psychiatric care), I already had color changes and burning pain everywhere, and I do mean everywhere.
I have been in that place you describe; where it's as if you have on a diving suit made of pure pain, and one of those old-fashioned diving bell-type helmets that covers your face and entire head, also made of pain, that actually ends up altering your sensory perceptions or even making sensory input into a sort of pain all its own.
I just want to put this out there: Note, if you can, while you are in this experience, that the "you" evaluating the extent and severity of your pain is related to, but not entirely the same as, the you that is experiencing the pain. That means that inside your mind, there is a place...Maybe a very small place right now...That isn't governed by the pain. Even if you can only explore this concept for a few seconds at a time, over days and weeks you will find that you can go to your pain-neutral place in your mind at will. This is not some sort of trick or New-Age metaphysics; not that I have a problem with either of these. I'm a registered nurse and a biologist, and spent years case managing for people with debilities, including intractable CRPS.
You are not your pain, even though I know it feels like you for sure are!
Even a few seconds at a time of relaxed, slow breathing and imagining you are in that pain-free place in your mind can make a world of difference over time in your perception of pain and distress over the pain. Think about something you love to do, or someplace beautiful that you love to go; imagine yourself there as vividly as you can: What does it sound like, what does it smell like there? Are you alone, or is someone special with you there? How does it make you feel to be there?
The signs and symptoms you describe above are consistent with, among other things, possible infection, and/or the centralization of your pain process. That just means that your central nervous system has been affected by the pain impulses coming in from the injured part of you. Your autonomic nervous system is usually the first affected in the case of CRPS, and this goes a long way toward explaining the sweating and temperature variances, as well as things like insomnia, anxiety, depression, problems with short-term memory, finding the right words sometimes, feelings of anger and frustration, etc..
If you have reason to suspect infection, you need to contact your doctor. Otherwise and/or in the mean time, here are a few things that have helped me and a number of other CRPS patients manage some of the symptoms:
Magnesium supplements for the cramping. I personally take 4-5 times the RDA of 400 mg daily; I learned early on that this amount prevented the cramps. At half that intake, I could still feel my legs especially (but also my torso and arms at times, and even the left side of my face) tightening up episodically, most often around the time I was trying to fall asleep at night. Even now, over 2 years later, if I cut way back on the Mag, 36 hours later the cramps are back in full force, so that's how I know I still need all that Mag.. Also, my Mag level on blood panel results came back well within the normal range, so I'm not entirely sure what my body is doing with all that Mag, but at this point I don't really care about anything except the pain relief part.
May sound crazy, but I also can't get by without an Aleve 220 mg at bedtime. It's small potatoes in terms of analgesic properties compared to say, morphine, but if I go without my Aleve for one night, 12 hours later my overall body pain is worse. Aleve works differently than opioids like morphine: It's an NSAID that targets/prevents the release of prostaglandins from mast cells, because prostaglandins are culprits in chronic pain and inflammation as well. Ditto, 25 mg of Benadryl at bedtime: It helps me to fall asleep and also helps with signs and symptoms of too much inflammation, which all CRPS patients have in spades: Benadryl is an H1 receptor blocker. Histamine 1 also is released by mast cells, and can contribute to pain via increased inflammation.
Are you starting to get the impression that mast cells are often a sneaky contributor to your pain?? If so, you are absolutely right. And congratulations, because not one physician in ten is aware of this, but in the next 5 years you (and your medical staffers) will be hearing more and more about medications for CRPS and other chronic pain conditions with an inflammatory component, being treated most successfully like autoimmune/inflammatory conditions rather than just getting bombed by opioids or nerve block injections and/or implantable pumps. In other words, it looks like the newer way to go is to treat the inflammation first, managing pain as needed along the way.
I also take 3 mg of Melatonin at bedtime; it helps me get more restful sleep. All this stuff is cheap, over the counter meds and supplements, as are the following:
Calcium: I take 2-3 times the RDA daily. It helps to keep me calm, and probably helps with the cramping also. CRPS patients often end up with osteoporosis, partly because we have a tendency to become less weight-bearing and less physically active over all, just due to things like pain, and for some, dizziness or vertigo, extreme fatigue. Calcium taken with a meal, and especially something a bit acidic like vinegar and oil salad dressing or yogurt, can really make a difference.
A good multivitamin, just because some days you don't feel like eating much at all, and sometimes digestion/absorption of nutrients becomes a problem for us.
A lot of CRPS patients either deliberately or just by process of elimination, end up adopting a low carb/high fat/moderate protein diet, as it seems to help manage many common CRPS symptoms, including inflammation. It's important that the fats be higher in Omega 3 than Omega 6 fatty acids: Unrefined coconut oil, pasture-fed butter, good-quality pure extra virgin olive oil, are some of the common ones used. Raw nuts or nut butters are a nice way to get more fats, if you can tolerate them. Refined sugars and carbs in general tend to make pain worse, as they increase inflammation as well.
You would need a prescription for low-dose Naltrexone. I dissolve a 50 mg tablet in 100 ml water, and take 4.5 mg or 9 ml, every morning. It took me about 9 months to work my way up to this dose, because of side effects of dizziness and constipation, but it has been SO worth the time and trouble, for the burning pain and gut pain. It's not a miracle cure, and none of the supplements are either, but as Dr. Pradeep Chopra at Brown University always reminds us (See his YouTube videos), if you find 5 things that each give you 10% relief, you now have a personal tool box that gives you 50% relief, and allows you to have better quality of life.
I had a series of 6 Ketamine infusions recently, and by the 4th one, actually had 3 weeks where I felt 80-90% back to my pre-CRPS baseline. It was amazing!! Unfortunately, the work comp insurance people are currently refusing to pay for anymore treatments, so I had to fall back on the rest of what I'm sharing here, in terms of meds and supplements. But onward and upward, right? We do what we have to do, and get smarter about it as we go along.
I know you are overwhelmed right now. And every one of us with CRPS is different from the others in some ways, but we have significant similarities as well. It's good that you are reaching out. It's reassuring to know you are not alone in what you're feeling, right?
I was where you are right now, two years ago; totally lost, in a sea of pain, going to bed at midnight and getting up at noon or 2 PM, barely functioning. My husband thought I was going crazy. My doctors thought I WAS crazy. When it was worst, I was barely functioning, and contemplated ending my own life daily. The only thing that stopped me was my faith and a strong desire to not cause my husband and kids any more pain.
I am still very sick, on paper, but in stable weather systems especially in warmer weather, I can not only walk independently, I can do light yard work, have a great tomato and flower garden, and do all my own cooking, all of which I love: I just work smart instead of hard. I always have some little indoor or outdoor project that I'm thinking about and working on. When I make even a tiny amount of progress on these, it makes me happy, and motivates me to keep going. I can't do everything I used to do (I'm 62 now, but used to drive a truck and haul my own bags of animal feed and bales of straw and hay, by hand, before my injury just as I had done habitually since the age of 12). It took some strategy to get to this point, and gentle range of motion exercises every day. Even if on a bad day you can only THINK about range of motion exercises, that still lights up those parts of your brain that control motor and sensory to your limbs, etc., so it's a lot better than nothing.
Wishing you your best possible life going forward. Keep talking, keep reaching out, keep finding work-arounds. One way and another, you will learn to out-wit CRPS on many fronts!
Sabrina. You are an inspiration. You made my day by posting all of this information. Thank you 🙏 I
You are amazing. Thank you for your post.
I too have found that Benadryl helps me to sleep and helps with the pain.
I notice that certain foods cause flares and try to avoid them. If I eat them, I will pay.
Weather effects me too. And hormones or lack of them. I am a 51 year old female.
Do you think leaky gut could be part of CRPS? Systemic yeast infection?
Thank you for all the wonderful information.
Tracy
Sabrina, I've read everything you wrote out loud to my wife. I started crying towards the end. My left ear has been red as a dark red cherry for 2 days and the pain is indescribable. I have much more symptoms that go along with this that I feel now that I need to post. I guess what I'm saying is that I need to post starting from the beginning and where I'm at now. I just hope that it doesn't overshadow over suffers. That certainly would not be my intention. Your words are wise and your experience in this, and I'm sure that you tried to keep it brief, are amazing. I just don't know what to do. That's why I finally reached out on this forum hoping to find answers. This is my first time ever doing this. It hurts so bad to stand outside or inside ad type. Now laying on my right side which is the ONLY side I can lay on is becoming extremely difficult. I had major needed surgery on 2-26-18. I was diagnosed with craniovertebral instability. The back of my head and neck was cut open to insert a device that is bolted to the base of my skull and bolted to my C-3 vertebra to stabilize my head. I cannot look down anymore, move my head side to side, and can barely tilt my head back. Any attempt makes things worse on top of what I'm suffering from spreading RSD. I have Atypical Trigeminal Neuralgia that was diagnosed in 2008 and the RSD has made it worse. Occipital Neuralgia as well. Yes,I had ketamine infusions, 4 of them, with no relief. Lidocaine patches all over the left side of my face and chin. I'm certainly a ugly site to see. Now all of this. I need to study and write down your suggestions as that is the same thing that I do with my med as to what time I take them and what they are. I've only been on the pain med and zanax since my surgery. My neurosurgeon is very sympathetic and trying to help me but his writing of these meds will stop I'm sure in the near future. I see a new pain clinic on 5-17-18 at MUSC of Charleston which he recommended. I've been there already in Dec 2017 and the doctor I saw was overwhelmed with my conditions but also that was before I found out that I needed surgery. GET THIS: I was the one that discovered that I had craniovertebral instability through extensive research through the Internet. I presented that to the 5th neurosurgeon that I saw in February and he sent me to Charlotte NC for a special MRI where I could actually sit tilting my head back, then forth to get the images that confirmed what I had. Bragging rights or pride by me discovering this I don't have. It's a living nightmare along with the neuralgias and RSD that I have. My life has been forever changed at 50yrs old. Boy do I have another medical story to tell. Diagnosed with ALS in 2005. Now there saying spinal cord related although I lost all functions in my legs, speech, and just about lost all functions in my arms. I was wheelchair bound for almost 3yrs until, for some reason that is still unexplainable I regained function. As I was getting my life back even though I still presented some neuromuscular symptoms I had a nasty fall in my ditch on 4-19-16 that left me paralyzed from the neck down for 6 hours. I regained function again but as the last almost 2 yrs I've been going downhill. That's what lead me to where I'm at at this moment with all that I've described. I'm suffering so bad. Anyway, I shared a big part of my story with you because I find you wise and you said that you were a nurse and a biologist. I hope this helps you understand where I'm at today. Thanks for your insight.
Thank you, Sister!
It is my privilege to share, and from your posts I know you feel the same. If even one of our fellow CRPS travelers derives even one tiny bit of benefit from our collective experiences here, it is worth every bit of the journey through fire. What are we here for, if not to offer help and reassurance?? We fall but to rise! 
Hi, Struggling50,
You bring up an important point: Yes, it seems there is some support in the medical literature for the leaky gut situation to be a factor in many inflammatory conditions. Additionally, an altered gut biome (read: The good gut bacteria got overrun by some bad gut bacteria) seems to increase systemic inflammation and is associated with autoimmune conditions, etc..
Dr. Pradeep Chopra at Brown University, CRPS (and chronic pain in general) guru guy, says in his YouTube videos that he's seeing a lot of CRPS patients that complain of digestive upset, and it turns out they are positive for SIBO, or small intestine bacteria overgrowth. To my knowledge, physicians and researchers are still not sure why this happens for us: It may be more than one thing going on. As a group, CRPS patients end up taking antibiotics more than most, as we have a lot of inflammatory signs and symptoms along with the pain, so doctors may prescribe antibiotics thinking we have an infection brewing. Antibiotics can kill off good bacteria as well as some bad bacteria. Also, for some, but not all, of us, our peristalsis (gut movement) is not normal; our gut may move stomach contents along too slowly, or even at times, not at all. This may allow some bad-actor microorganisms including bacteria and yeasts, to get a foothold when otherwise they wouldn't be there long enough to do damage. There's a very simple in-office test for SIBO, by the way, and there's a special antibiotic that specifically treats it pretty effectively.
Additionally, there is some evidence that susceptible people are experiencing more inflammatory response to gluten these days, maybe not outright allergy for all, but some sensitivity: One of my docs told me that two of the main reasons are shaping up to be: 1) The wheat we eat today, as well as other gluten-containing grains, are being ground SOOOO finely by the huge industrial impact mills, that the particles can actually pass through the walls of the intestine into the bloodstream. 2) Wheat in particular is no longer the same wheat your grandparents ate: It has been modified six ways to Sunday to increase yield, ripen all at the same time and stand up better in the field, to ease the process of machine harvesting, and it has in some cases been selectively bred to have a much higher gluten content, and the chemical structure of the gluten has even changed over the last 70 years, to provide consumers with the light and fluffy baked goods they now prefer.
I eliminated not just gluten, but flour products from my diet a few years back; I was following the dietary advice of Dr. Joel Fuhrman, trying to get healthy on his "GOMBS" or "nutritarian" diet (see his website for great recipes). I was OK for the first few days, didn't notice any big change. Then I got tired. It felt like I had just run out of reserve in my energy "tank", in a way I'd never felt before. Then I got dizzy, crabby, and was dreaming nightly of stuff like big loaves of French bread... Which I've always been able to take or leave in real life. As a nurse, I was able to identify pretty quickly that I was going through a type of withdrawal!! This included insomnia, chills and sweats, and joint and gut pain. But over the course of the next 5-7 days, these symptoms became fewer and further between: And what became my new normal was a feeling of optimism and steady energy.
FYI: Every time I fall off the wagon (holiday meals for instance) I go back to the mini version of how I used to feel when I ate a lot of carbs including flour/gluten. Ugh. And I start to gain weight within days if I eat like everybody around me.
I think we are all being affected by the standard American diet, and negatively; it's just that people like us, with one or more chronic pain and/or inflammatory illnesses, are like the canary in the coal mine. But I'm willing to bet that even "normal" people don't have a clue how much better they would feel if they'd quit eating this stuff.
Regarding the weather: YES!!! I find myself several days per week yelling at the weather person on TV and/or our weather stations at home, because they say we are in a stable system in terms of barometric pressure, but my brain matter begs to differ. If the barometer is dropping, I'm dizzy and feel like there's an empty space in my head, right between my eyes. Also, I sneeze a lot. If the barometer is rising fast, I have a global-type full-skull dull headache, visual disturbances, and I cough when I first get up in the morning like you do with post-nasal drip. Sorry, meteorologists all over the world: You guys and gals may have gotten a college degree in your discipline, but you are only as good as your instruments. That being said, the average chronic CRPS patient IS an instrument!!
We are a farming family, so keep track of weather more closely than a lot of other folks. My husband finds it hilarious but maybe a little spooky, too, that I can predict a front coming in up to 24 hours before our home weather stations do (Insert X-files soundtrack music here).
Regarding hormones: I feel you. I take a Remifemin tablet twice daily. In case you haven't seen this over the counter supplement, it's from Germany, it has black cohosh as the active ingredient, a month's worth costs about $13 at our local stores. There are a couple other brands of cohosh supplement, but I'm vegetarian, so can't use those others as they have some gelatin or non-vegetarian Vitamin D or whatever. I'm 10 years past menopause, so you wouldn't think I'd need to supplement, but every time I try to cut back on the Remifemin, I pay with hot flashes and insomnia, within 48 hours. Don't know if it will work for everyone, but works for me.
And yes; you are absolutely right; CRPS messes with everything, including your hormone production, because in advanced cases, it is messing with your brain chemistry, busily sending distress signals that don't make any real sense anymore, because you are supposed to be getting over the original illness or injury that precipitates most cases of CRPS anyhow, but your central nervous system (Brain and spine) is like a dysfunctional old girl/boyfriend and just can't let go of the "sick" relationship with your injured body part. Crazy, but true...Not to mention, painful.
Hope some of the above tirade is helpful, even if only to suggest topics for further detective work on your part. Wishing you best possible outcome on the journey... Keep asking questions, you are definitely on to something here!
Dear Survivor,
Let me just first say...Woah!!!! You are amazing!!!! Way to research, way to advocate for yourself and fight for your life, and for your family's welfare!
When you can, please consider going down the research rabbit hole again, like the meta-analytic person you are: Check out the recent journal articles on autonomic autoimmune ganglionopathy and small fiber neuropathy, as related to sudden-onset signs and symptoms of CRPS.
A great author/researcher for this is Dr. Steven Vernino, MD, PhD, in Texas. He has a research partner at Stanford, a Dr. Muppidi. Their articles will give you some perspective on how to approach your complex issues. Bottom line: You are likely to get better treatment results if your physicians factor in that they need to consider the inflammatory/autoimmune component of your CRPS as well as straight-up pain management.
There's some evidence in the last few years that part of the treatment modality for chronic, intractable CRPS should be a trial of IV Immunoglobulin, or TPE, total plasma exchange. Looks like IVIg has fewer side effects and maybe more favorable results for more patients, but it's early days in terms of the published journal articles as far as I can tell.
There's also a great book by Dr. Lawrence Afrin, called "Never Bet Against Occam". It's about $20 on Amazon, with shipping. It's a great overview of the modern epidemic of inflammation and inappropriate mast cell activation getting into the mix with just about any chronic condition you can imagine, and making things so much worse and harder for physicians to identify root cause, and to successfully treat patients. Basically, Dr. Afrin says that when a patient shows up with a boat-load of what seem to be unrelated symptoms that have been going on for years, you have to look to autoimmune and inflammatory mechanisms first. Because just like Occam's Razor/Law of Parsimony: What are the chances that all of this stuff isn't related? What is more statistically likely: That a single patient has 20 odd, rare, surprising, unrelated conditions? Or that the patient has a single, underlying systemic condition that can explain all the rest (or at least, most) of their signs and symptoms??
In the meantime, if your treating physician is OK with this and you don't have allergies or sensitivities to same, you could try some more back-door over-the-counter meds that help to manage inflammation: Another H1 blockade, like Claritin. An H2 blocker, like Pepcid. There are cheapo generics of these.
Don't give up hope. On the worse-than-usual days when you feel like the pain is absolutely eating you alive, keep asking the hard questions. Keep researching for answers. More are coming all the time. If not already done, read Anne Louise Oaklander, MD, PhD at Mass. General. Her team has done amazing work, and she is a straight-up genius regarding CRPS and chronic pain in general.
Just putting this out there, based on my own experience: The good news is, yours is an inquiring mind. That's a very valuable asset. The bad news: You probably already have, and will continue to, want to yell at your medical staffers in total frustration: "Try and keep up, here, people!!!"
Because you are already so far ahead of the curve!
Keep in touch. Wishing you and your family better days ahead, in the very near future. Fortunately research in the field of CRPS has exploded in the last 10 years or so; it's continuing almost exponentially, as near as I can tell. We are close to understanding the mechanisms, which means we are likely within a couple years of revolutionary, effective treatment modalities, not just for managing pain, but obliterating this sucker.
There are some other really smart, insightful people on this site; we all learn from each other: You can think of it as a Hive-Mind motivated by about equal parts pain and compassion 
You are part of our vanguard, my friend. I know you never asked for this, but here you are, and your experience will benefit people who are looking for answers; people you will maybe never know.
Hi Survivor,
I just wanted to put this out there: I, too, now have atypical trigeminal neuralgia, just based on signs and symptoms. My one and only ER admit was a couple weeks back for increased dizziness, pain and numbness of my face and the part of my head that included the area of ears and skull that would normally be covered by a broad ski band. Not surprisingly, I got worked up for stroke. CT came back wonky, but (more sensitive) MRI came back with zip, nada.
But days later, the numbness evolved rather suddenly into severe, episodic super-heated lightening-strikes of pain in the sides of my face in the territory of the trigeminal nerve, complete with severe aching and even swelling on my neck, just beneath the sides of my skull where cranial nerve #5 comes off the CNS.
Back on Gabapentin, which is reducing the pain from a 10+ to about a 7, which I can usually live with.
It had been 2 years since my last big flare of CRPS that had resulted in the signs and symptoms spreading; just when you think this thing has spread to everywhere, it proves that not so much/watch this space. Sigh.
What I wanted to tell you also is, look up the use of topical DMSO if not already done. And Naltrexone is great, but you can't take it if you are taking opioids, so not a practical piece of advice for all pain patients, that's for sure.
Also: Forgot to say, that as trite and lame as it sounds, you will find that if you set aside even 5 minutes a day to laugh, even if it's just at some YouTube video or a scene from your favorite comedy, it uses muscles and releases endorphins that help your circulation and mental/emotional health.
Sometimes when things get grim, I forget to smile, let alone laugh. When I get back in the habit of spending a few minutes daily in "humor therapy", I can feel the difference in a matter of days. And my husband says that I will never know how reassuring it is for him to see me crack a smile, or laugh aloud.
I know the whole trigeminal neuralgia thing makes it so at times you can't open your mouth all the way without causing pain that is off the scale, so you may find yourself limiting the time for, or intensity of the humor factor; but I can tell you from 2 years of experience, it does help.
It also helps to remind yourself that as freakin' messed up as absolutely everything is right now, your body is intelligent, and wants to get back to normal. It will work with you, as you find your way around this situation and ultimately learn to outsmart it in various ways.
Hope you're getting some sleep... Hang in there, brother.
Shave my head today in tears. Lidocaine patches all over my head. Surgery on the back of my neck and head to hold my head stable. RSD flare ups, Occipital Neuralgia, Trigeminal Neuralgia and sleeves and gloves on my arms and hands. Still suffering underneith it all. Severe left ear ache, can't smile or move my jaw without excruciating pain. Severe double vision. Neurotic not effective higher dose makes things worse. I don't know what else to say. Meditation,,,, ohe my god on what. Sorry to sound so drag. Going to miss my daughter's graduation in VA from college. I'm incapacitated and ugly as hell. I will not leave my house looking like this. Just got choked from my own saliva and made things worse. Muscle spasticity or spasms won't let up no matter what. Feels like I'm dying from all of this. Gotta stop typing because I can't see through my tears. There'snothing left. Life is over for me. I'm the walking dead. That's why I haven't posted anything lately. No use.
Best of luck for you Sabrina
Sorry to sound so deeply depressed last evening, I'm just suffering so bad. Shaving my head and applying lidocaine patches all over is breaking my heart. Got some aleve and benadryl and hoping for the best. Neurotin seems to make things worse so I've taken it upon myself to come down from 600mg 3x a day to 300mg 3x a day. I cannot tolerate any other anti-convulsants. Too many things going on at one time everyday. I've been fighting this, all of this for 2 yrs and my symptoms are out of control. Very uncertain about my local pain management because I've seen the same doc once before and he was overwhelmed with all of my symptoms. That was before the major surgery done on my skull and neck. I had to have it but it made the existing RSD worse. I had a bad fall that damaged my tendons and ligaments in my skull that is located at my C-1 level. Cranio-vertebral instability was my diagnosis and my surgery was on 2-26-18. You've most likely read about the neuralgias that developed and got even worse. By the way I was diagnosed with Atypical Trigeminal Neuralgia in 2008 so have I been a fighter all the way through this, Yes! What I did write about not leaving my house is true. Sitting makes things much worse so a car ride even a short distance causes more chronic pain. I cannot stand a shirt on me because of the RSD. Left arm and hand is so screwed up and right is following quickly. Back of head and left side of my head and ear is always throbbing and burning as well. Now I have a device surgically implanted to where I cannot move my head, I think I may have mentioned that before. I really thank you for your kind words and suggestions. We all have our own battles I understand so you just keep hanging in there and do what works for you. My prayer is that your RSD doesn't get any worse. Thanks again
Dear Survivor,
One of the hardest, scariest things about CRPS is the underlying fear that no matter how bad things are in terms of pain level, they could get worse. The first year that I had this thing, when in the course of less than 3 months it had spread from my lower left leg to everywhere, including swimsuit area, so couldn't sit up for long, or do any of the other things you generally do with those body parts without pain that made me want to scream except that...I also had developed a sensitivity to light and especially noise, so screaming would have just made everything worse.
Turns out, per a study at Drexel University by Dr. Robert Schwartzman et al, that after the first 2-3 years, the pain pretty much doesn't get significantly worse for most patients; ie: The average CRPS patient rates his/her pain at about a 6-something by year 2, and only a 7-something on 10-scale 10 years later or so. Color and skin temp changes tend to slack off as well.
That study is a goldmine of info., even though it was written in 2012: The title of the article is "Systemic Complications of Complex Regional Pain Syndrome". It covers a lot of territory, and is a great reference for medical staff and patients/their families.
If there ever was a CRPS sufferer who needs a medical expert, my friend, it's you. Any way you can get to Drexel or Brown University? Those are the two biggies that I know of out on the East Coast.
You need a comprehensive plan, not somebody who's overwhelmed and therefore, attacking your signs and symptoms piecemeal. Somebody needs to devise an individualized plan of care for you that gets out in front of your current status, instead of chasing the pain and debility, as well as profound (And totally understandable!) emotional fall-out from what you are going through.
Wishing for you that there will be light in the darkness soon. So sorry you are in such a bad place right now, and had to miss your baby's college graduation. I missed my daughter's graduation from University of Illinois last summer as well; just couldn't do all those stairs in the auditorium, or tolerate the noise and crush of people (you never know when someone might bump into you, or with the best of intentions, put a hand on your shoulder or forearm, etc.. And those hard plastic seats might as well be medieval torture devices, right?
I did the best I could to let my girl know how proud I am of her. A family member live-streamed the part of the ceremony where my daughter got handed her diploma. I cried tears of joy more than pain that day.
You will find a way forward. You already know more than most of the medicos do, about your condition. Keep asking those questions, and you will find answers; since I came down with this thing in 2015, I'm amazed at the speed and the volume of new literature in the peer-reviewed medical journals. If you have to have CRPS, this is the best time in history to have it; we WILL see cures, maybe several different ones since we are a heterogeneous population, after all, but there will be cures in our lifetimes. And probably, in the next 5-10 years at most. Some amazing, innovative science brains are closing in on this thing, and fast.
Sabrina,
You are awesome. You've heard me that counts. I want to be there for my daughter's graduation. She is only 20 years old and graduating with a bachelor's degree in communications. She wants to make a difference in the enviroment. She's focused. Her name is Lauren and she is a beautiful young lady. Most say that she got her looks from me and it's true being her father. I was once very handsome but this with the lidocaine patches and the inability to move my head has got me down. But I must say that you are lifting me up. I'm not sure what my future holds but I will continue fighting this. No sense in telling you what all has been done again but it's major. Encouraging words like this makes me want to post my story. YES, IT'S WORTH WRITING A BOOK. You've put a smile on my face knowing someone out there cares because of your similarities. I got tired of suffering this morning aND decided to crack a few cold ones. That's really not me but suffering makes a person do things out of desperation. I've caught up on my bills this morning making calls to settle my finances. I guess 6 beers made me feel 10 tall and bullet proof. For the sake of truth I cannot do the same everyday nor for my beautiful daughter as she is worried about me. I live in SC and she's going to school and about to graduate in Wise Co, VA. It's a 6hr trip and sitting is something I can't do for the ride. Sitting during graduation and a ceremony the night before will be so uncomfortable especially suffering and having to stand the whole time covered in lidocaine patches. Sabrina, I'm so torn and very concerned about this and HER FEELINGS about me not being there. After all, I've been a big part in making this happen for her besides "her own" hard work and dedication. Lauren is at the "top of her class with many honors. Damn, sounds like I'm convincing myself to be there. I love her with every once of my heart. I'm reading what I'm sending you in recognition that half of this is not focused on my chronic suffering from all of this. My saying used to be is,, "You only have one life, that's it!" The flare-ups have been disastrous, it affects my thinking. You don't know me but I was once the envy of my siblings. Well, I'm still told this because of my endurance especially from my one and only younger brother. He has referred to me as Rocky Balboa. This though is a fight I wasn't prepared for. No training. Everyday I say to myself, "one more round, I haven't heard any bells yet. I am being pounded to a pulp. With all truth, I don't want to give up. I'm a fighter and I certainly don't want to let anyone down. So, what should I do? I believe the answer lies within me. Right now I'm jamming. Haven't done that in 1 1/2. I deserve it. We all deserve it. I don't believe anyone knows just how much suffering is involved. I will take your advice and listen. I believe that you genuinely care because you are understanding being that you are suffering yourself. Maybe I'll tell my story on this site. It's a matter of when I'll be able to think clearly and endure the suffering from typing. It's pretty tragic. Having a previous diagnosis of ALS sure to a lot out of me then I got somewhat well just to have a fall that has changed my life. I miss the old me everyday. That's part of what's driving me to anger and depression. Anyway, I've said enough. You are an inspiration. Man have Ive heard that so many times. Waiting for a cure or relief from this is exhausting every single day. Now I have Aleve and taking motrin. I have other meds, not much, to help me cope. No antidepressants though, I cannot tolerate the side effects. I'll keep you posted and keep dropping a line to me. I may be telling you about me being there for Lauren's graduation.
A very sincrease thanks,
Jimmy
Hi jimmy. Certain foods and medications make my allodynia so bad and I can’t tolerate clothes and socks /shoes. What type food do you eat ? Maybe I can see if any could be aggravating it for you ?
I had high pain day too. Changing my babies nappy (diaper ) I felt like a alien thumping on my neck the pain so high and intense today ! Hoping tomorrow is brighter for us
Some medications made me worse. Example. Amitripiline. I was on this for few months. Helped me sleep but my god I got rare side effects from it. Dystonia very bad in my back and neck. Don’t think I will recover for it. I stopped it after I realised what was happening ‘. Also lyrica. This drug is devil in my eyes. Helps some but for me horrible. Gave me terrible head pain. Spasm etc all in head. I also felt sucidical. How I knew it was lyrica I stopped it for a few days as I had ran out and well I have to say the cold lifted from my depressed brain.
Anyway not much I can offer except an Irish hello and you are in my prayers
Hi brenda,
I took it upon myself to taper myself down to 300mgs of neurotin 3xday. Just started that 3 days ago. I cannot tolerate any other anticonvulsants. Had been taken 600mg 3xday. I went up 3 nights ago, one time, and it increased the left side head pain above my ear (occipital neuralgia) even worse " I believe." I cut it back myself. Trial and error, you know what I'm saying. Got some Aleve to take am and pm. Also trying benadryl for the burning and itching in the evening. It did seem to help very slightly. I am also on zanax 3xday and hydrocodone 3xday since my surgery on 2-26-18. I don't know if pain management will continue this but I'll find out on the 17th of May. Distonia I haven't thought of but muscle spasms are topped out at the pain scale. Head pain you're having may be Occipital Neuralgia. I've had the injections in the back of my head for this and I only got relief for about twelve hours. Anesthesiologist called it being a numbskull. I completely understand him. So now, just yesterday, I shaved my sides of my head to apply lidocaine patches. I have a full head of hair at 50yrs old. Been complimented on my hair at my age but I did what I had to do out of desperation. I needed the patches on the back of my head as well because of the Occipital Neuralgia and the surgery I had made it worse. Pay attention to Sabrina's comments to me. Like you, she's experienced with what we are going through. Although my case is very complicated I do respect and understand now that I'm not the only one. I'm sorry that you're experiencing a very bad day, it's every single day here but I'm learning. THAT'S THE KEY. I've learned through references at the bottom of these websites and there's more. It's out there. But we must be hesitant to some of these solutions that lead us nowhere. I'm sure I'll post a very bad day and night again but I now know it helps. These last 3 days have incapacitated me. Today, I've had a few that's all and I'm going to grill some steaks regardless of how I'm feeling. A few drinks at home is not the answer but sometimes we break. WE NEED A BREAK EVEN THOUGH THE PAIN CONTINUES. We're going to beat this even if it takes us down completely. My little brother and only brother has called me Rocky since I was a teenager. He now believes that I can beat anything. So put your gloves on and keep fighting.
Wishing you the best and stay away from Lyrica if it doesn't help. That's a nasty drug,,,,
Jimmy