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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.

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  • Posted

    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

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    • Posted

      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.

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    • Posted

      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

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    • Posted

      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. 

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    • Posted

      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. 

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  • Posted

    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!

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    • Posted

      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

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    • Posted

      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.

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    • Posted

      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! smile

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    • Posted

      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!! smile

      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!

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    • Posted

      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 wink

      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.

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    • Posted

      What a well written reply, and I say this as a retired pain clinic doc.  Now, I have been out of practice for about 15 years due to my own chronic pain journey and you all have scared the bejesus out of me with this thread.  I have treated multiple patients with what was called RSD back then, all of them in the arm and all of them got better with medication management and some stellate ganglion blocks, I swear.  I am now reading this and seeing your horrific stories of it spreading everywhere.  I am also now fallen victim to this cruel disease after an elective ankle surgery in Feb.  I just diagnosed myself this weekend, and am obviously in the early stages. I was in PT anyway for the ankle and so they got me started on desensitization which was agonizing, along with my regular strengthening and range of motion exercises. Fortunately, I already had a spinal cord stimulator for my lower back in place, with a program for my ankle, I switched to that and whipped that sucker up to high which cut my pain a good 40%, but sheesh, I am almost 10 weeks past surgery and my pain is almost as bad as it was as the day after, ugh.  Now, after reading on here my big worry is how do I prevent this from spreading?  I never had any of my patients when I was practicing have their RSD spread as yours have.  With my luck, mine will now that I know about it LOL.  You seem so well informed Sabrina, I thought I would ask you first,  I certainly took down all your suggestions to Survivor.  I am currently on a ketogenic diet as I was reading that people can often wean down their gabapentin dose for mental disease when on this diet.  I wanted to see if the same mechanism of action was at work in chronic pain, a change in the sodium and calcium channels in the cell membranes, that changes the rate of firing of the affected cells, and so I too would be able to lower my gabapentin dose.  I HATE being on gabapentin, besides being stupid , it makes you fat, what a marvelous drug.  Anyway, I am only a couple of weeks into my diet change and haven't yet been able to lower the gabapentin and then the RSD/CRPS hit me, which kind of ruined my little experiment.  Now only can I not lower my gabapentin I am gobbling so much of my hydrocodone it may not last to my next visit and I may be buying kratom to tide me to my pain clinic visit, ugh.....

      Lynn

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    • Posted

      Hi Sabrina.

      I do have gut issues. I used to have diarrhea now it is constipation.

      Sorry, too much info but I think it is important.

      It is a waste product just sitting in my gut. I can eat plenty of fiber & drink lots of water and... nothing.

      But this last weekend I went to Lake Powell in southern Utah.

      I was getting up at 6 & 7am everyday and getting out in the early morning sun. And Sun all day and afternoon sun.

      I had 3 bowel movements on Saturday, 2 on Sunday and 2 on Monday. More than I had had in weeks!

      Now, normally I sleep until noon and some days I get outside once in the early evening to feed outside kitty.

      I have read that we need early morning sun in our eyes and late afternoon sun in our eyes to regulate our circadian rhythms.

      Which regulate our sleep and bowel movements and that Melatonin is produced in our gut, Melatonin production equals sleep, less anxiety and depression - a cycle. If we don't get the sun in our eyes it interferes with this cycle.

      I would think wearing sunglasses would interfere with getting the correct light in our eyes for this cycle to occur.

      But then there is the UV damage to consider.

      I am planning to try leaving my sunglasses off for 10 to 20 minutes in the morning and about 4pm everyday. I won't be staring into the sun, mind you :-).

      Just outside watering plants, petting kitty or just taking the air.

      I'll let you know how my experiment goes.

      Thank you for the great information. It is very helpful and I will look into the books, articles and food suggestions you have made.

      I have noticed too that if I go off of my diet and indulge in chocolate or chips or a sandwich or potatoes, I pay with increased pain, interrupted sleep, foggy brain etc... Just feel overall crappy.

      Take care

      Tracy

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    • Posted

      Hi Lynn,

      So sorry I totally missed your post, above! Regarding the question of how to stop the spread of CRPS: The mechanism of spread appears in the main to be the result of no need for further peripheral chemical signaling (think mast cell release of inflammatory cytokines) in order to excite the small-fiber nerves that communicate with the dorsal root ganglia. The central nervous system keeps firing pain signaling back, as if it were still being stimulated by the original injury site from back in the day when the injury was still acute. This is central sensitization in a nut shell. As this process continues, you actually see changes in the CNS on fMRI and CT; specifically, in the representations of the affected body parts v. the unaffected ones (Obviously, if you have the same body parts affected bilaterally, this is confounding).

      There's compelling evidence in the literature that after about two years of chronic pain onset, it is common to see changes on CT/MRI brain including specific loss of grey matter, and enlarged ventricles/generalized brain atrophy. Fortunately this usually occurs without significant cognitive loss. Additionally, fMRI demonstrates abnormalities in parts of the brain associated with judgement, negative emotional states including anxiety, short-term memory, and the ability to perform mental tasks under pressure.

      But most of us already know some or all of the above intuitively, right?wink

      Anyway, you want to avoid all that scrubbing and what-not of "desensitization" in PT, as that is exactly, exactly, EXACTLY the sort of noxious stimuli that can cause or at least exacerbate the spread of CRPS from the original site via the mechanisms of Central Sensitization.

      You tell anybody who gives you grief about this that 1990 called...It wants its state of the science back! smile

      I saw you had posted somewhere in this thread that you found that 2016 article depressing... I so agree with you! But knowledge is power: Even if the research itself is not particularly encouraging, in terms of outcome at the current time for whatever reason, every peer-reviewed article/study/review is just one more piece of this 1,000 piece puzzle.

      As you read the literature, and obviously, some days will be better for this than others for critical thinking: Note with your medical mind that even some eminent physicians and researchers with national or even international reputations are, frankly, a decade or more behind in their understanding of CRPS as in part, an autoimmune/inflammatory syndrome. Also, they don't always appear to be aware of centralization of pain as even a thing...Or they state it's unproven. Sigh. In the mean time, patients are getting worse because these pieces of the puzzle aren't being factored into treatment plans: Just treating pain in CRPS is like just treating cough in chronic heart failure.

      I'm no doubt preaching to the choir here, but: Textbooks are often up to five years outdated by the time they get into student hands.

      Older physicians and research scientists have a tendency, all other things being equal, to confirm the validity of their earlier published work via their current published work. That's just human nature.

      That being said, sometimes the older research from BSB (before skin-punch biopsy) can be enlightening: Authors who were/are excellent researchers and/or diagnosticians didn't have this tool to definitively rule out other causes of the typical CRPS signs and symptoms, and so had to be very keen observers of behavior and overall clinical presentation.

      As you are no doubt aware, these days, your clinicians are looking for objective evidence of whatever. Period. Testing has in many ways taken the place of critical thinking. After all, nobody gets reimbursed these days for critical thinking and thorough ROS: Only for procedures.

      This works OK for stuff like most frank ortho injuries, but for something like CRPS...Not so much.

      Take-home here is that many of us are going to have to do much of the critical heavy-lifting, and be the well-informed captain of our care plan. If we don't, there won't BE a coherent plan. 

      Plenty of evidence is accumulating in the literature that will result in major changes in how CRPS and related conditions are managed in the early days, and more patients will actually get diagnosed early, as well; therefore will have greater likelihood of meaningful recovery, or at least greatly reduced risk of spread of the signs and symptoms.

      I believe that no small part of this will be due to clinicians being less hesitant to treat CRPS aggressively in the very early days, once they realize they actually have effective tools with which to do so: For now, these include Ketamine IV, IVIg, and maybe TPE (total plasma exchange). A bunch of new drugs are on the horizon, targeting key parts of the inflammation process at various points along the cascade, including straight up neuromodulation.

      Onward and upward!

      Keep in touch as you suss out more about these issues: You have valuable insights and experiences to contribute related to your clinical background. Thanks for that! smile

       

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    • Posted

      Hi Sabrina.

      I have heard that MRI's of people with CRPS show lesions on the brain, kind of like MS lesions.

      I have Fibromyalgia, have had since I was a kid, before they even knew what fibromyalgia was. When I was diagnosed with it the majority of doctors didn't believe it was a real disease. They felt it was all in people's heads.

      I am 51 now and have CRPS type 2 in my right foot and leg.

      But from what I have read of CRPS type 1, full body CRPS, it sounds like Fibro on steroids!!! It sounds like the Fibro pain and symptoms I have but much worse.

      I have always said the CRPS I have in my foot and leg feels like Fibro on steroids.

      When the Fibro became "full blown" for me in 2003, I became overemotional, had more anxiety and depression, making decisions became hard, sometimes I can't reason, judgement is not great and performing mental tasks is hard and more stressful than it should be. Doing taxes this year was overwhelming and I spent days recovering from it. Makes my pain worse, Fibro and CRPS pain.

      I had to leave my job in banking in 2003.

      My short term memory is bad. Someone will tell me something and a few seconds later it is already out if my head. This all started with the onset of full blown Fibromyalgia.

      My intuition ( gut instinct) used to be spot on and it is murky now. I question it and usually go against it and make the wrong choice.

      I saw a video of a male doctor at a CRPS conference who said that Fibromyalgia and CRPS are the same disease. I do not remember his name. But from personal experience, having both diseases, they are very much the same. CRPS is just more INTENSE.

      Tracy

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    • Posted

      Hi ladies.  I am having ketamine tomorrow. Very low dose only 100mg over 4 hours. But I hope it will help pain in face head and neck and left foot.  My body temp well limb temp is quite low again ice cold.   I have full body crps and in head face teeth.  I am a little sad tonight.  I have husband and sister and neighbour all helping tomorrow to get me to hosp. Mind my kids. Get them to school and leave me recover tomorrow night but Friday it’s back to mammy mode.  I am praying I get some relief.  I just wanna be normal again and set my alarm to bounce out of bed. Go running go to work be a happy pain free mother too.   I am struggling this week. 3 baths a day to get pain lower and calm my body and mind.  

      I read your posts. Simple things this week are hard. My patience is short with kids.  

      I am doing well on diet and pacing but still nervous system is mental. Only have this since July 16 and how the hell hasnot spread so quick and fast.  

      I can only think it’s because the first year I was told to exercise work out move move move no one mentioned pacing ever.  Did that just over do things ?? I keep active most days as in I look after 3 young kids myself.  I luv them. They are my world. I don’t know how I could actually cope without them I prob never move out of bed .... 

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    • Posted

      Hi Tracy,

      That doctor was probably Philip Getson, a DO out of Drexel University. He was brought to Drexel by (now retired) preeminent neurologist and CRPS researcher/clinician, Dr. Robert Schwartzman.

      He's an interesting guy, because he is a family practice Doc, not a pain or neuro specialist; it just so happens that by word of mouth, he kept getting referrals from other doctors and patients and/or families, because unlike most clinicians in the 1990's, Dr. Getson not only believed his patients were telling the truth rather than making up all the strange signs and symptoms of CRPS, but also learned thru experience that his Fibro patients often presented just like his CRPS patients, only they couldn't remember having symptom onset be the result of an injury or trauma.

      As you are no doubt aware, a trauma precipitating CRPS is part of most diagnostic criteria for this disease. And then there's the part about no other, better explanation for the signs and symptoms, etc..

      And as regards your physical, emotional, cognitive symptoms: All I can say is, welcome to the club!! I may appear much of the time to be a pretty cool customer on the outside, but on the inside, I want to just sit down in the middle of the floor and scream myself hoarse!

      I don't do it for a couple of reasons: First, my poor husband would totally freak out. and secondly, I don't always have the energy or coordination to get up from the middle of the floor by myself wink

      Basically, our brains are swollen. It's neurogenic edema, though, so your common diuretic medications such as Lasix, do not work very well to relieve it. Ketamine works to mobilize neurogenic edema; I found that out first hand, when I had to ask for a bedpan in the middle of my last 3 Ketamine IV infusions. As soon as I let go of all that extra fluid, I was thinking more clearly than I had in months, if not years. Only lasted about 3 weeks each time, but SOOO worth it.

      I landed in the ER about a month ago, with weird facial numbness/pain, as well as blood pressure that was approaching levels incompatible with human life as we know it. Anyhow, ofcourse they wanted to do a CT/MRI to rule out me having a stroke on their watch. Turned out negative for stroke/CVA, and that this was just the super-fun prelude to atypical trigeminal neuralgia (which is a bear but I'm dealing OK using Gabapentin 300mg TID so far), but since my last MRI of the brain about 2 years ago which was normal, this new set of scans showed generalized grey matter atrophy and a small aneurysm at the back of my head. Now, the aneurysm is something that has to get monitored by neuro, but the atrophy, which sounds awful, in reality is just the expected consequence of being in pain for two or more years, and not having your pain optimally managed. You don't typically see more atrophy after those first two years, but you do see nerve tract remodeling still going on, often in patterns that are not as efficient as your original brain "wiring". For instance, to access some memories regarding abstract or historical fact, I have to imagine first a smell, or a song, or maybe a scene from a movie. Strange but true!

       This atrophy doesn't usually affect your cognition to any significant extent, overall,  but in fact, the very areas of the brain that are trying like crazy to remodel themselves related to the pain signalling that just won't quit?? Those are the areas that affect things like judgement, short-term memory, anxiety, sleep architecture, etc.. Add that to the inflammation and swelling, and your over-active autonomic nervous system, and you've got yourself a genuine hot mess!

      I was very upset when I found all this out, but I decided to look at it from a different angle: If CRPS and other related pain conditions actually remodel your brain's wiring schematic, why not make it work for you?? Who do you want to be 6 months, or 5 years down the road? I decided I wanted to be the person who lives to serve others. I do a lot of reading of religious and philosophical authors, without regard for which faith they practice, if any: Instead, I look at how they live/lived their lives, and at the difference they made for others. I have found that when I'm conscious of being truly grateful for my life and what I've been given, both pleasant and unpleasant, I can see that everything is really a lesson designed to make me a better human being.

      I have to re-read the best stuff over and over because hey, some days I too simply can't lay down those short-term memories, but that's part of the Plan, too, I imagine! smile

      One thing about chronic pain: It's sufficiently scary that I am no longer scared to speak (compassionate) truth to anyone and everyone. I don't care if you're a Fortune 500 CEO, POTUS, or a world-famous surgeon; I will tell it like it is, because I've already walked (and continue to walk) thru fire and lived to tell about it!

      As have so many on this site.

      Wishing you your best health in the very near future,

      Sabrina smile

       

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    • Posted

      Pacing is important but I sometimes overdo. When you have CRPS or Fibro you need to keep movement and weight bearing. If you don't, you regress. If I rest too much the CRPS foot and leg start to atrophy and quickly! Same with the Fibromyalgia. If I don't move and get mild ecercise I lose ground quickly as far as stamina and muscle strength.

      I really hope the Ketamine helps you. Have you tried Low Dose Naltrexone? Is Neridronate available where you live?

      I had pain in my teeth with the Fibromyalgia in 2003/04. They actually felt swollen! How is that possible?!

      Keep us updated on how the Ketamine treatment goes.

      Wishing you well.

      Tracy

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    • Posted

      Thanks Tracy. I certainly don’t rest a lot af all !  I fair of atrophy in my legs.  Not yet anyway. 

      Thanks getting up now 6 am and heading for one day infision. Tried LDN and the nausea was so bad even at .5mg. Stayed on for 2,5 weeks couldn’t bear it. So stopped. 

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