Oh humans. We vile creatures, who feel better when others are doing comparatively worse. Rest assured, reading about these three painful conditions will not make you feel permanently better. But it might give you a bit of temporary perspective.

 


Cluster Headaches

This is one of the worst pain conditions you can have. The difference between migraines and cluster headaches is like the difference between a canoe and a cruise ship. You do not want a cruise ship to run over you, but you will probably survive a canoe encounter.

Cluster headaches affect about 1 out of 1000 people. The pain is sudden, sharp, and extremely intense. It centers around your eye, which is not an area where you expect debilitating pain. These headaches can happen daily for weeks and then go into remission for months, or follow a variety of other cycles. Like another painful condition, trigeminal neuralgia, the cause of cluster headaches is related to pressure of blood vessels on sensitive nerves.

Amongst the available treatments are inhalation of pure oxygen, narcotics, and botox. But if you have cluster headaches, you are interested in not just treatment, but also prevention. And no one knows for sure what causes them. The nickname of this type of headache is “suicide headache”. That has a very very bad connotation. But keep in mind that medical science is progressing extremely fast, and a variety of types doctors may be able to help if you have these headaches. Shop around, if possible.

 

Complex Regional Pain Syndrome

This condition is, in my opinion, the worst. What happens is that, essentially, your nervous system goes haywire after an injury. When 99.9% of people sprain their ankle, it swells up and then heals over the coming days and weeks. But sometimes, the nervous system continues to “wind up” after its initial reaction and never stops sending pain signals. This can be accompanied by swelling, discoloration, changes in sensation, and terrible terrible pain. The pain is typically continuous and can have a burning nature. Some people are so sensitive that a slight breeze causes tremendous pain on their skin, and they can’t wear clothing on that area.

CRPS is a strange condition because it can range from fairly mild to absolutely debilitating. I learned about it after watching House MD, in an episode where Dr. House got shot and forced himself into a coma using a hallucinogenic drug called ketamine. He miraculously wakes up pain-free for the first time in years. Being a curious sort, I looked up whether this was possible. Holy schnikies, it is! One of the only treatments for CRPS is to use ketamine, either by IV, through your nose, or during a coma (eeek!) to sort of “reset” your nervous system. The coma is not legal in the US though, so you have to pay around $30,000 to have it done in Germany or Mexico. But even this terrible condition has some promise in research…vitamin C has been found to perhaps have a role in preventing CRPS from developing after an injury.

 


Locked-in Syndrome

Okay, so this isn’t technically a pain condition. But let me explain myself. Imagine that you wake up one day and you can’t move. You can’t move anything, at all. No speaking, no wiggling a finger or toe, no facial expressions. And this condition never (well, almost never) goes away. This is locked-in syndrome, a rare form of quadriplegia that is chronicled in the movie “The Diving Bell and the Butterfly”, and which hopefully you never develop. It can happen after a stroke, brain injury, medication overdose, or a variety of other things. But it is very rare, so try not to worry too much.

So why did I include this on the list? You lose your ability to move, but retain your ability to feel pain! And because this can happen from an accident, you better believe that there are patients who have locked-in syndrome but can’t fully express the pain they feel because of difficulty in communicating (which is done by eye blinking if you happen to retain that ability). Also, laying on your back all day is bound to lead to muscle and joint aches. So I say…if you ever know of someone with this condition, be as nice as humanly possible to them and visit them as often as you can. I did read a heartening story of a patient with locked-in syndrome who found a girlfriend, which some people found ludicrous but I found completely and totally awesome.

 

62 Comments

  1. I had this rare condition for awhile.  Caused, I think by a cast on my broken arm that was too tight.  One of the more common reasons I believe.

    Fortunately, I did not have the excruciating pain which as I understand it, is even more rare.  Only a very mild sunburn feeling.  The “cure” was to exercise the affected part, in my case my arm and hand.  My hand was frozen in a claw like position.  After weeks or maybe it was months of physical therapy, I got the use of my arm back and can close a fist.  However, I cannot straighten my fingers.

    In my case, there was a 7 week delayed diagnosis and during this time the stiffness seemed to get worse and worse.  I suspect I would have full use of my hand if it had be diagnosed right away.  I can’t even imagine how a person can go through the necessary physical therapy when they have the typical pain associated with CRPS.

    It is a frightening condition for sure.  It can happen with as little as a needle stick or splinter in the finger.  It can jump around the body.  It can return once you have it.  Most doctors never even run into the condition so if one gets it, they are fortunate if it is diagnosed promptly.  Even the neurologist I saw could not figure out what I had.  Now that is scary.  I did find it on the internet while I was waiting for the various doctors I saw to figure it out but was thrown off by the fact that I was not experiencing the pain.

    Reply
    • Yeah, there don’t seem to be that many conditions as fear-inducing as CRPS. I’m glad you got better!

      Reply
      • I got.crps from carpal tunnel surgery. It has.changed my.whole life I now have it in both hands. And.also stomach. I am grateful for each.day. I will not.let this.get the.best of me.I also see one.of.the best pm dr at.storybook hosp
        Have a low pain day.:-)

        Reply
  2. Look into Meniere’s disease sometime. Not technically pain, but absolutely miserable. Thankfully mine is controllable for now, but I’d had MDs tell me it’s the one condition they absolutely could never live with.

    Reply
    • I’ve heard that a couple times about Meniere’s disease. Maybe I should write an article about it.

      Reply
  3. Supplementing 1g ascorbic acid daily (or at least 500mg) for 45-50 days reduced incidence of Complex Regional Pain Syndrome by a factor of 4-5 (average 0.22) consistently across 4 studies of wrist and ankle injuries.
    http://www.ncbi.nlm.nih.gov/pubmed/22985495

    Reply
    • Yup, vitamin C performs awesomely in controlled trials for RSD, and it was the main supplement I personally took after surgeries. I brought it up to a surgeon a few years ago and he wasn’t aware. To avoid the suffering of RSD, every surgeon should get a simple one line email about this!

      Reply
      • I could not agree more. I feel fortunate that I learned about this by accident just after my girlfriend broke her ankle and got pins and rods inserted.

        Reply
  4. Jackpot! I suffer from both Cluster Headaches and CRPS :( The Cluster headaches happen roughly every 6 weeks and last for between a day and a week. I have just had a bout this week. And The CRPS has made my life hell for the past year. I got it from an accident in Oct 2012 where I was burnt to 20% of my body. A nerve in my left hand was irritated and it has already spread to all of my limbs, hips and up my back. The thing is that when you have pain conditions like this you still find reasons as to why your not as bad off as others. Iwont die from either of these conditions etc. On the other hand, a few months ago I was being tested for MS and I was hopeful. At least MS has more options. Also, I dont have Ketamine comas but I do have Ketamine Infusions and they are awesome when your in pain and cant sleep from it. :)

    Reply
    • Just the fact that you ended your comment with a smiley face makes me happy. You must be quite a resilient person, since two sucky conditions is more than twice as sucky as having one.

      Reply
    • me too. I call the headaches killer headaches. and Chronic pain after 3 mva . shit of a life. cluster headaches got one now.

      Reply
    • I have cluster headaches, CRPS, fibromyalgia, as well as hemiplegic migraines (just like having a stroke), migralepsy (just like being tazered), and a number of other conditions, and often get them simultaneously.
      I am lucky to be writing this now, last week I was going to end it all! But I have twin 14 month old babies and in the end I couldn’t leave them to grow up without their father like I had to do.

      Reply
      • David,
        I am very happy to hear that you couldn’t go through with killing yourself. When that kind of depression sets in, it is often difficult to overcome a lot of these issues. Yes, depression is a biggie when you have Chronic Pain. I know it all too well. I have had pain issues for many years. I suffer from depression and anxiety due to my chronic pain. I take medication for my depression & anxiety, plus many pain meds too. Depression in itself can cause pain. Any way, I haven’t been diagnosed with CRPS, but I was diagnosed with fibromyalgia while in my 30’s. I have suffered with bouts of depression for as long as I can remember. It isn’t fun. I began suffering from neck and back pain in 1989 after a car accident. After I healed from my major injuries I started going to the chiropractor, but those treatments were only providing temporary relief. As time went on my pain has continued to get extremely worse. Four (4) years ago, I was told that by a pain doctor, that he didn’t believe I had fibromyalgia, hence, what is causing my severe pain that is almost constant. Found out degenerative disk disease runs in my family and have had to undergo injections, physical therapy and finally surgery on my lumbar spine. I have had 3 lumbar spine surgeries (spinal fusion from L3 to S1) After my first back surgery I started experiencing worse pain after my surgeries. I had a neck fusion this year (C5-C6). Unfortunately, my multiple surgeries have left me in more pain almost always. There is very little time that goes by that I go without pain somewhere. You all may be of great assistance into my severe pain issue. I just saw my doctor yesterday about a headache I had had since Sunday, along with shoulder, neck, rib and lower back pain. I have fallen three(3) times in the past 2 months which have increased my pain all over. I am going to talk to my doctor about this condition. She may send me back to a pain management doctor, but that is okay. Oh, I see a psychiatrist for my depression & anxiety meds and a social worker to just talk about my depression issues. She has often wondered how I can keep such a positive attitude. It is difficult at times, but I trust in God, my meds and my wonderful husband that also suffers from severe pain. He is amazing. God Bless you all. I am going to talk to my doctor about CRPS.

        Reply
      • Hang in there! I too felt desperate recently but the sun will come up again tomorrow with new hope for help. Keep asking for help!

        Reply
    • I thought I was the only one , I have been suffering from CRPS in my left foot/ankle for 18 months and after 38 years I finally have a diagnosis for my cluster headaches which is the worse pain imaginable , I started a treatment with prednisone and verapamil 19 days and I’ve only had 1 intense headache …fingers crossed

      Reply
      • I have no words, just great empathy as I watched my own father endure RSD for over twenty years. I didn’t think it was possible but I know someone now who lives with it very well. She’s amazing! She is on high doses of pain medication but seems to manage it in spite of their many side effects. She walks with braces, but has become so strong due to excercise and training almost every day. Her life is full of meaning and joy, in spite of her pain and I’m sure she’s has moments like you. Who wouldn’t. Please press on. Do what you can and hold onto your faith! Sending all my love, strength and prayer to you!

        Reply
  5. CRPS is not a RARE disease just misunderstood and not taught in medical school my 14 yr old daughter has been suffering with it for two years and as a mother it is very hard to sit by and watch them suffer knowing there isn’t much u can do when u have pm dr act like your child is faking and think all they need is more exercise !!! Amazing they will prescribe 1000 of pills to adults but kids are told to suck it up and increase exercise …

    Reply
    • Oh man some doctor’s are soooooooooo irritating. Know-it-alls, terrible bed-side manner, makes me really appreciate when I run across a caring doctor. Of course they have a lot of stress from work, but some pain doctors are real jerks.

      Reply
    • I can relate to your story Stephanie. My niece has CRPS/RSD. She is in so much pain. Had numerous nerve blocks done but they only last for awhile. Wishing the best for your daughter and hoping the Dr’s check into this disease and start treating her like she is just a lazy child. Bless you both.

      Reply
    • If you go to the National Organization of Rare Diseases (NORD), you will find RSD is considered a rare disease. (rarediseases.org

      Reply
  6. I live with CRPSII. Got it from an ankle and foot surgery. Have been living with this for 11 years. It is living in hell on earth. Worst pain I have ever felt in all my life. It is 24/7. Never goes away. Medications only dull the pain. I sleep an average of 2 hours a day. Many days I do not sleep at all. Pain is worse at night so I very seldom sleep at night. Stress, weather and usage of limb makes the pain worse.. Has spread to my right foot now.

    Reply
    • I wish you luck, and strength, and maybe clinical trials will start popping up to provide you some help.

      Reply
  7. Thanks for writing more about RSD/ CPRS. I have a very rare and aggressive form, Venipuncture RSD from a needle.

    CPRS has been around over a 100 years, since the Civil War when soldiers reported the first time what became known today as CPRS. What’s in a Name? is a great article to explain how research on the condition went off on one track and may explain why so little advances have been made in 60 years.

    I am trying to organize an Open Source Cure Contest for CPRS – to be held in November 2014 – the CPRS Awareness Month.

    The problem has been a lot of disinformation circulating. CPRS is actually caused most often by surgery or injury at hospital now a days although many veterans have returned.

    In 2006, it was discovered that nerve injury was at the root of most CPRS cases.

    It is a dream to see the research from the beginning reviewed because right now, any time a drug company wants, it issues a press release. Any time a physician wants, they spout incorrect information about CPRS so the truth is muddied.

    One of the worst parts of the condition is the horrible way the medical field responds, if the doctor even knows, their knowledge is probably based on very old science.

    I had a neurologist tell me in San Francisco that I should see a psychologist. (Like I hadn’t!) More disturbingly is how the doctors here refused to treat me because no one believed a needle could do this, and then, because i was injured during a blood draw at a hospital that had not treated me with Ketamine since I was diagnosed right away, and I am now permanently disabled.

    No apology. No help now that I am disabled for the last five years.

    I really hope we can have a CPRS Open Source Cure Challenge in November 2014 and you can help us promote and maybe organize :)! at Hopkins. My father trained there, and I grew up there in the Medical Student housing when I was younger.

    Thanks again for bringing awareness!

    Reply
    • Hey, I live in San Francisco, do you? By the way, I like your writing style. If you’d like to do a little interview about your pain history, and have it posted on PainDatabase, just go up to the menu under “Start Here” and contact me.

      Reply
      • I am 17 in August it will be 9 years I have had rsd. I got it when I was a 8 from a soccer injury. It took me a year to get diagnosed. Before I was diagnosed the doctors told my parents I was faking,making up pain for attention. My parents believed these doctors. After I was diagnosed with CRPS, also known as RSD they gave me my crouches back and told me they were sorry. From there on I wasn’t sure if I should believe them or not or if this was some cruel test, like when they got a behavioral therapist to force me to put my bad rsd foot on the ground. But I believed them. Anyways I have had med after med seen doctor after doctor had my rsd spread fullbody. I had procudere after procedure surgery after surgery test after test ketamine infusions after ketamine infusions. I didn’t walk for 6 years after surgery on my good foot the rsd spread to that foot ended up in the wheelchair for six years developed dystonia, pots, gastroparesis,learned I have Ehlers danlos syndrome and many more diseases spent several years in the hospital if you add it all together. Was able to walk for three months after 14 months inpatient after another surgery rsd came back fullbody again and nothing has helped except for ketamine I have been in pain every second for the past 8 and 1/2 years. Tried to get the coma doc turned me down because of my gastroparesis he was afraid I would asperate will in a coma because of the gastroparesis . I feel like I am on fire on every inch of my body my arm is paralyzed on my chest and hand is curled up because of the dystonia as well as my leg is .

        Reply
        • If I had a nickle for every time doctors thought a patient was faking pain, I’d be a gazillionaire. My second orthopedic surgeon sent me to a psychiatrist rather than investigate my joints issues more thoroughly. I wish you luck (rather than how people say “the best of luck”, since RSD patients already don’t have great luck), and admire your ability to cope at such a young age.

          Reply
          • Thank you I appreciate it. If only the coma trials were still going on first Germany stopped them then in Mexico they stopped their coma trials as well. This was the only thing that was successful on severe cases like mine . I am sure there is people who have found other modalities that were or are successful,hopefully. However, I have not been lucky…

          • I admire your strength. I was diagnosed 2 yrs ago, at the age of 24. I’m miserable 24/7, but I couldn’t imagine getting this when I was young. Please keep that strength going! Bc they are FINALLY doing the research that should have been done a LONG time ago! There are new treatments & drugs coming out. All you need to do is hold onto hope <3
            Mine started after breaking my right foot.. It's now in both feet and legs, as well as both arms and hands. I've also had multiple dental issues, I don't sleep, my memory is done, and the muscles in my legs are gone. ( I was a soccer player too!).
            I've tried all the treatments out there. Ketamine infusions are the only thing that helps take the edge off.
            BUT! I'm driving up to NJ tomorrow (I live in MD) and I'm getting a treatment that is on the newer side. No surgery. No meds involved. It's called "Calmare Therapy". You should definitely look into it! It's a 10 day thing. You should google "Dr. Cooney- Calmare" and you'll get all the info! :-) I'll be posting updates through out my treatment on my blog http://www.hopeforyourcause.net, if you guys want to check up on how it's going. They say that ill know after treatment #3, if the treatment is effective for me. But I've spoken to many others with CRPS and Calmare has given them their life back! Some After 12+ yrs of having it!
            Just remember, hold onto hope. If you ever want to talk, please feel free to email me anytime! hope4yourcause@gmail.com :-)
            Sincerely, Heather Lynn

    • I also have just newly been diagnosed with venipuncture RSD by one doctor but have not received any treatment or help from any other doctors because it is hard to believe that a needle caused this to happen. I would really like to talk with others who have contracted RSD through this route.

      Reply
  8. Crps has no cure. It can go into remission but it is always there. I have had it for 3 years. It is progressive and degenerative and awful. Not every type of attempt to control the pain works for every patient. Ketamine works well for me but is a life long commitment.

    Reply
    • Oh man, I feel for you. Three years with CRPS is like three lifetimes worth of pain. I’ll write an overview of CRPS treatment options soon, all/most of which you are probably well aware of.

      Reply
  9. I’ve had crps since 2005 i was misdiagnosed till 2009 way too late to even help..I’ve been through at least 60 procedures pills, drug therapy, and surgical procedures. ..I’m still here hanging on in there hoping with every heartbeat a cure is found..I’m now also a lab rat I will try everything and anything to elivieiate the daily pain and suffering …..hang on in there sufferers against all odds surely something will make the sun shine soon on all of us xxx

    Reply
    • Hang in there! Science can be pretty amazing — if only there were more dollars devoted to pain research.

      Reply
  10. My sister and great aunt both have trigeminal neuralgia and let me tell you it’s no picnic either the doctors did call that one a suicide disease also my aunt lost so much weight from not being able to eat for months from the nerve pain in her face it’s horrible.

    Reply
  11. I myself suffer from both Cluster Headaches and Complex Regional Pain Syndrome (also known as Reflex Sympathetic Dystrophy)…..I also have Osteogenesis Imperfecta (OI).

    Cluster headaches are aptly named Suicide Headaches. And CRPS is sheer hell to live with every day.

    Reply
    • I also suffer from these 2. I am only 38 been suffering since high school. However these past 2 yrs have been increasingly worse and becoming more difficult

      Reply
    • Oh, you have OI? Geez, that sucks, especially if you have something like type 3. I had two girlfriends with OI, one had it so bad she would break almost everyday. Her infusions really didn’t work to make her bones any stronger. In the end she found out from her geneticist that she basically had her own type all together. It sucked seeing her in pain all the time. My other girlfriend said the infusions actually work for her and she hadn’t broken a bone in a few years. Which was good. But she was still always in pain all the time in her bones. I too have pain issues, I broke my rib out of nowhere a few years back and I have joint,nerve, and bone pain everyday that’s really tough to handle, especially because none of my doctors want to believe me. Stay strong :)

      Reply
  12. I have 2 of these 3 so I gues its as bad as it could be..

    Reply
    • Taking the oveweivr, this post hits the spot

      Reply
  13. Was dxed with RSD/CRPS after a blunt trama injury in 1997. Aggressive physical therapy after bier blocks and stellate ganglions(repeated weekly for 10 weeks) helped control it. What so many patients do,is stop using their limbs/extremities because the pain is so intolerable when they do try to use it. BIG mistake! We must work through the pain and make ourselves use our RSd limbs! After a while, the pain DOES start to subside. Too many are afraid to push past the terrible pain of using the extremity,and end up with the pain worsening and often spreading in to other complications, like frozen shoulder,and spine problems,with upper, joint and knee and hip problems with lower. While it is not a cure, it IS very helpful to restore some ability to use the limb. 13years later I suffered another injury,(a crush injury) this time to my lower extremity on the opposite side. Again, force myself to use the limb constantly! Like most who have this, lack of sleep,touch,noise, stress, stimuli et al exasberate it. The RSD has gone systemic,and I have severe movement disorder along with it. Was also dxed with systemic scleroderma and sarcoidosis in december. Lucky me! ;). What can ya do except play the hand you are dealt. Trying to put together a concert/documentary to bring awareness,and raise money toward research. I will make this hapen,along with friends who work in the music/film industry. My kids are all in the bay area(one right in SF) and my cousin is a Dr at USF. Would love to meet up with you when I am down there! Hang in there with your pain and remember you may have a pain disease, but it doesnt have to define you. Choose to defy it!:)

    Reply
    • Oh boy, talk about hanging in there! Like Rod Stewart said, some have all the luck and some have all the pain. A concert/documentary sounds really cool. If that gets going, let me know and I’ll write up a little post about it. Also, I occasionally do interviews with pain patients (just a short email back and forth), so if you’re interested than shoot me a message from the menu above (Contact is under the “Start here” category).

      Reply
      • not if….When :)..sure will! you hang in there as well! they thought I had E.D, ,but ended up being scleroderma…..

        Reply
    • very nice and thanks for doing all this for us I have a dream of having a fundraiser a huge ball where we can get dressed up since so many of us cannot do it all the time

      Reply
  14. Thanks for this I have had RSD going on 13years from a IV which is a one in a million chance this will happen at 5 years it attacked my organs as well as causing the left side of my face to atrophy slowly to a rare condition called Parry Romberg Syndrome which it has been 8 years and still no doctor here in Oklahoma to help me,it is now causing cluster type headaches as well as Trigermal Neuralgia.I had to have ovaries removed after RSD attacked them causing them to swell so large was told ovarian cancer but when did surgery no tumors just large.I then had to have left side of thyroid removed because it was size of an egg after removal I was not put on thyroid medicine for over 2 more years by then I was using a wheelchair from pain being so bad.In 2010 finally given thyroid medicine and helped greatly for 3 months then as sick as before I finally found out my cortisol was very low like 2 or 1.6 as you know or not RSD has so much to do with the endocrine system so crazy what all it effects took until 2012 and having blood drawn monthly constant testing to finally have to have rest of thyroid out in December of 2011 because even though on medicine my right side of thyroid was so large obstructing my breathing in February of 2012 after still not getting better I had now also been diagnosed with Fibromyalgia and Ankylosing Spondylitis I goggled fibro and hypothyroidism and learned about a test called reverse T3 and could not believe information I found so went back for post op check and asked for this test in which was told that they really do not run this test I am still not sure why because I have this and probably about 70% of fibro patients and CFS patients have this with adrenal fatigue which I have after getting on correct medicine has so helped I have even lost the 78 pounds I had gained during this time that I kept saying my thyroid was causing this but not believed by my primary care at all I had a friend tell me that while I was going through this I looked like a 90 year old woman about to die I was only 40 when it all started.I just found out this past weekend after going through some old medical records that in 2011 when I had a MRI to check for a pituitary tumor which was negative it showed chiari malformation and was never told this I will be calling my pain doctor he did not order this test so he did not know as well very frustrating though it explains some symptoms that I have been having and just thought part of one of the others I have and lastly I now have dupuytren”s contracture which is in my right hand as well where my RSD started my pinky and ring finger are becoming deformed and will not straighten this is new so have not seen hand specialist yet so this is my long complicated story which has even more things I left out as far as just being treated horrible and complications with surgeries thanks for doing this if anyone is interested in seeing what PRS looks like I have pictures the reason I say is that we found a link to this disease and the sympathetic nerve as well

    Reply
  15. I have never quit using my arm I had to young sons and husband to take care of so when I hear it is because you quit using I get upset I paint I still do probably more than should as I grocery shop by myself I clean what I can I do a lot and have had all the blocks the thing with RSD it is different for all and getting it the way I did is worst way they even did study so please it is fine to say what worked and I do think some quit moving but I did PT I did it all and still have not had it go in remission

    Reply
    • Grocery shopping with full on RSD – yikes! Everybody with RSD should get special treatment — People with invisible diseases get the shaft. I bet everyone says this, but hang in there.

      Reply
  16. Hey! Interesting list, I knew of two of these. Another one you should have included in your list, is Hyperacusis with pain. It can range from moderately annoying, to completely debilitating. It is a profound sensitivity to sound, and in the case i’m referring to, excruciating pain. Google Lesky Hyperacusis or Chronic Ear Pain.. it is one of the most nightmareish conditions you can imagine…

    Reply
    • Just googled it. Oh boy. Again, it can’t be fun to have one or more sucky, non well-known conditions, since doctors poo poo you and the general public has no idea.

      Reply
  17. I’m another CRPSer (gee, it’s like we’re a networked community or something) who used to be an RN until my immune system pooped — no pathology, just no immune system to speak of — and, after lifesaving acupuncture, became a programming documentation writer until the repetitive stress and keyhole surgeries led to CRPS … which took years to get diagnosed. DOI: December 2001. More lifesaving acupuncture in 2008-2009 (I really was almost dead; sheer stubbornness, and a kind of willful curiosity, were all that kept my heart going) and I got a dietary revision that put most of my pain in remission.

    No grains. No fresh dairy. No perceptible pesticides. No VOCs.

    Suddenly things work.

    Interesting note: when you look at the studies that follow people from injury to see who develops crps, the conversion rate is almost 10%.

    It’s not rare. It’s horrifically underdiagnosed.

    Reply
    • Hey, I think I may have seen your blog before! You’ve got a pretty cool history with the acupuncture and dietary changes — I occasionally do interviews with pain patients (just a little email exchange and then edit it down and publish it), and if you’re up for one just drop me a line up in the menu under “Start Here / Contact Us”.

      Reply
  18. I wanted to comment that I have published three books about RSD. Two of them are memoirs and the third is a compilation of fifty interviews with RSD/CRPS patients. That book is called “Sharing the Pain: the RSD Interviews” and the stories are very compelling. I think everyone here could relate to each indiviual’s story and many people have said they plan to share the book with their doctor.
    http://www.amazon.com/Sharing-Pain-Interviews-Mary-Gonzales/dp/0988800373/ref=la_B005PJLDXO_1_1?s=books&ie=UTF8&qid=1394011319&sr=1-1

    Reply
  19. Yes I have RSD/CRPS since 2009. It began in my left wrist with torn ligaments that were not surgically repaired. I asked for an MRI but Dr refused to order it. My hand became purple ice wrist stiff, cold severe pain. Pinky and ring finger have tremors and the nails turned brown color.With in 9 mos RSD spread to right hand. 2SCS, full body RSD. Lots of meds and Pain. Need the ketamine infusions but ins. Refusing!
    RSD is a monster that steals your life!

    Reply
  20. I am a 54 yr old male. When I was 20 I was diagnosed with cluster headaches. I’ve been fortunate to experience long periods or remission. Although when suffering from these headaches the pain is excruciating and it does feel as if the pressure in my left eye socket will cause my eye to explode. In addition to this at 29 I experienced a severe ankle injury. This injury was a result of many surgeries of vary relief. In 2005 I had a surgery where an external fixator was placed in order open up my ankle joint. It wasn’t a typical surgery for an ankle but it provided substantial relief. Then in May 2010 I hurt my ankle at a job site. After this injury I was diagnosed with RSD. I have never experienced pain at this level. At the start when I would rest in bed and the A/C would come on, the air from the vent across my ankle/foot would create a pain level that I am unable to explain. I spent over a year in physical therapy in order to walk again. Since the onset I have been unable to work and now receive disability benefits. If anyone who reads this is going through something similar I want to extend my heart felt sympathy. With that said I know how difficult it is to stay positive but you need to find a way to do so and take it one day at a time. Each day set goals that are obtainable no matter how small they may seem but you need to get yourself out of your bed. Realize each small thing in life so you’re not consumed by the pain, swelling, etc. It isn’t easy but it is the only way. I’m no expert I’m just one person of the unfortunate that are crippled by RSD and/ or Cluster Headaches but I am not going to allow it to rule my life.

    Reply
  21. I have suffered from CRPS like symptoms (not officially diagnosed) since my spine surgery in 2008. As much as it hurts and is miserable…and it is…it’s not quite as painful as my bilateral Atypical Trigeminal Neuralgia (ATN) and bilateral Teigeminal Neuralgia (TN) I’ve had for almost 28 year or the bilateral Occipital Neuralgia (ON) I have had since additional head trauma from my titanium frame being screwed into my skull for my bilateral Gamma Knife Radiosurgery (GKR) in 2010. I can only speak for myself,with nearly three decades of personal experience, but ATN/TN and ON are even worse.

    Reply
  22. It’s actually $250, 000 for the ketamine coma. I have full body CRPS/RSD and have had it for 8yrs now. It’s awful and debilitating.

    Reply
  23. I’m 14 and have had CRPS for 6 years. Two days ago I was told it has damaged me so badly psychologically and that I have severe depression. I never realised, because I hide it from most people but I am so glad that ( in your opinion) it’s in the top three of most painful conditions because I would feel pathetic if it was like number 456. I have pain all through my body, I can’t feel either of my legs and cannot hold pens to write at school because my arms and hands hurt so much, my jaw gets so bad sometimes that I can’t eat and my eye sockets and face sometimes feel like they are on fire, but tears sting so I never cry. I have pain down my back, my hips, and my ribs hurt when I breathe they crush my lungs and I hate it. But the worst pain is my soul, and my personality is just being drained from me each year that the CRPS clings on. If people saw me in the street I don’t think they would guess. I walk normally, I speak normally, and I act normal but that’s thanks to weeks and weeks in rehab when I was 9, 10 and 11 where they taught me to walk and run and essentially, they taught me how to fake that I am ok. And I’ll never stop faking happiness, because if people knew the truth and treated me differently that would be a whole different pain altogether.

    Reply
    • Phoebe-Hannah, you came to the right place. Pain isn’t fair. It isn’t right. And it’s worse to behold in the young.

      Gertrude Stein wrote, “a rose is a rose is a rose” – and that may be true for flowers, but it sure isn’t for pain. Every pain is different, every minute of every day in every different body. So while I will not claim to understand your pain, I do understand pain, and I think most people who find this site probably do. If you ever want someone to talk to or vent, please do email me at keelikaye@gmail.com. I’ve got nine years on you, girl, but I’m still pretty young and I remember vividly struggling with pain as a child and teenager.

      All the best in the world and the gentlest of hugs to you.

      Reply
    • Phoebe – Hannah,
      How are you doing?? It’s been almost a year since you wrote this and I’m just wondering if you’re ok.
      <3

      Reply
  24. Yep, I have had CRPS since 2011. My entire life changed. Fell off a ladder at work. My right foot broke, torn tendon, and other damage. Never ever heard of it until I got it. Diagnosis never came until 3 years later when I was already in late stages.All kinds of weird symptoms like bluish red discoloration of entire leg, skin gets thin & shiny. Hair stopped growing on 1 leg but the worst is the pain. I have the cold version of CRPS. My foot is constantly freezing and I need a heating pad or outside heat source. I would trade a million crazy symptoms not to have the intense 24/7 pain. It changes you. I am not the same person. I will continue the fight and just do the best I can. I have a wonderful supportive husband and 2 awesome boys. Support systems are crucial with this kind of pain both physically and emotionally. Stay strong CRPS Warriors.

    Reply
  25. Sucks to have cluster headache. I have it…

    Reply
  26. I have both CPRS and cluster headaches.

    I get symptoms of the headaches every 4-6 weeks.

    The CPRS is permanent. Debilitating. Dispiriting.

    I had an accident doing mountain running when was 19 (now 44). I broke my left knee cap, damaged my medial minuscule cartilage, caused vertical fractured in my femur, tibia and fibula and also damaged my misdial ligament. Being 19 I got up, walked 3.5 miles. Refused treatment and went a completed my Physical Education teaching degreee.

    I have had five arthroscopies on my left knee. Plus I have had to have carpal tunnel surgery on both hands.

    I had increasing pain in my lower left leg, pain and swelling beyond description. Dead feeling left foot. Burning hot.

    My GP diagnosed CPRS.

    The same pains then transferred to my right leg! Never any injury to my right leg.

    Feels like I am permanently standing in a vat of lava!

    My GP referred me to the hospital. Met an ignorant resident registrar who was doing research in CPRS. He said I did not have CPRS because my skin colour had not changed colour at the affected sites. He told me that I didn’t have CPRS, it was just an effect of my shoes!!!!

    What an ignorant tosser!!!!!!! (Sorry for my language)

    My GP agreed and ignored his comments. She is confident with her diagnosis. She put me on gabapentin and amytriptiline.

    The amytriptiline works well, helps to calm my legs down at night so I can sleep (my wife also!!!).

    The gabapentin did nothing.

    Am now using Solpadol (Codeine phosphate 30mg/Paracetamol 500mg) instead. Better, but still in terrible pain. Debilitating.

    Just my share of the daily life that is me!!!!!!!

    Rob

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

*


6 × five =

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>