Chronic Pain from Rhabdomyolysis.Pain=Hell

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IH8Pain
Regular Member


Date Joined Sep 2011
Total Posts : 27
   Posted 1/13/2012 2:08 AM (GMT -6)   
My first post. hi everyone :-)

Please excuse any spelling or grammatical errors but the bloody PAIN keeps me up every night and I feel like I'm in a different dimension or something. I feel like Im losing my mind, scratch that : lost my mind. I am literally surviving off of rest, no actually REM sleep, just rest. I didn't know it was possible to survive off of just rest and no actual sleep but it turns out i was wrong. I can survive off of just rest but of course at this point I'm starting to hallucinate and have delusional thinking from the sleep deprivation so yeah its surviving but what kind of way is this for a person to live their life. I cant work, cant sleep, cant enjoy anything at all. I'm depressed because of the pain so i was prescribed remeron but it still doesn't help because its the pain that is causing the depression and I told them that but they are acting like Im drug seeking when Im not at all. They really are making it hard for me to get pain meds, did any of you have this huge of a problem getting pain medicine?

In July 2011 I got something called rhabdomyolysis. I dont know much about it except i wouldn't wish it on my worst enemy. The rhabdomyolysis apparently causes muscle death or something, and since my case was severe the toxins that are released into your system(blood steam I guess. my urine was bloody tea colored almost black, scared the heck out of me) from the muscle dying caused my kidneys to fail so i needed dialysis for three weeks. this was the sickest I have ever been and i will never forget the day i almost died from rhabdomyolysis, i mean the pain was so bad they gave me dilauded for three weeks.

Now I am only on Connecticut state insurance so I'm not getting the best care. Every doctor i have been to has told me I had different things to explain the pain/weird sensation in my left foot, hamstring muscle (i think thats what its called,its the muscle behind my left leg above the knee) and a weird sensation around my ear and the right side of my face where the dialysis was hooked up to in my neck. My neck/face started out as pain but now its a weird sensation I cant explain to anyone unless they had it themselves.

I had doctors tell me my foot pain was a sprained foot but three months later i still had pain so it wasnt a spained foot . The pain in my foot started as a pain level 10 then 9, 8, 7 and its now 7 months after the rhabdomyolysis its at about a 5/6. Another doctor told me it was muscle death and then kicked me out of the building with no pain meds even though it felt like my foot was in a vice 24/7 .Then I had doctors telling me it was neuropathic pain and they gave me neurotin which did absolutely nothing for my pain or my sleep. I was told the neurotin would help me sleep as well, idiot doctors man. Im getting so sick of them...like none of them will prescribe pain meds. Then they gave me something called tramadol for awhile but that was so weak, it was equal to taking about three pills of acetaminophen or just drinking water lol. What do you guys think it is do you think its muscle death? and it feels all weird and painful because the muscle cells are trying to grow back or something? or some kind of neuropathy?

Im also looking for chronic pain management support groups in my area. Im from Hamden , Connecticut and cant find any. I live close to Yale New Haven Hospital and I don't even think they have anything like that for free or that will take state insurance. I mean you think they would have free chronic pain support groups just like AA and NA, they should!Are they rare?

So yeah Im in pain and I would rather be dead then lose another day of sleep. I was prescribed ambien for like two weeks then they told me its addictive and bad for you so they stopped it and gave me trazadone, which had no effect. I tried diphenhydramine, doxylamine succinate and melatonin , they do not work either. I was also prescibed Amitriptyline for sleep which is odd because its just another anti-depressant i dont need, it didnt work either. i need something strong because I'm no amateur insomniac at this point. i should be given an award or something for dealing with this pain and sleep deprivation without pain meds. the point is the pain is really horrible and i need help and friends who are also in a lot of pain to talk to.

I had to go in and edit out a few of your words, please know this forum has rules in place concerning language. With it being a public forum we never know the age of the person reading posts here, thanks.

Post Edited By Moderator (straydog) : 1/13/2012 3:13:22 AM (GMT-7)


Ssinss
Regular Member


Date Joined Jan 2012
Total Posts : 66
   Posted 1/13/2012 4:53 AM (GMT -6)   
Non sleeper here either. pain is to much so I sit or try and pretend a hot bath works. Ready for this one... if you have a cat it might hate you and check with your dr, i find a catnip tea to help ever so little but anything right now. Even talked to admitting a little while ago because I am not sure how much more I can take. Chamomile tea, and not just dip a bag but toss in a few and let it sit there for ten or more minutes, not at boiling but very warm. Heck at least with a little honey its yummy. I tried all the sleeping aids, trazedone gives me restless leg, I have a collection of anti depressants. I once had a Dr that, my theory was, she thought the happier i was about chronic pain the better I would be... next Dr..... who I like who has her hands tied because of my PM.
The best of luck and hope for relief,
Sins


Oh and I think a few people will concur that first they try you on every idiotic pill of the day before actual pain relief. Hang in there.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 1/13/2012 8:01 AM (GMT -6)   
IH8Pain - hi, and welcome here, though I'm sorry you've had reason so find us.

Rhabdomyolysis is certainly a horrible thing. I'm glad never to have experienced it myself, but I did help nurse animals with it while at uni. We are not doctors here and can't diagnose you, but it's quite possible that you do have elements of neuropathic pain there - when the muscles swell with the rhabdomyolysis, nerves can become compressed and damaged. Mostly they heal, but it can take time.

A pain management doctor or clinic would definitely be helpful for you, I think - they are best placed to deal with different pain meds to help you.

All the best,

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14971
   Posted 1/13/2012 11:49 AM (GMT -6)   
Hello IH and welcome to Healing Well's chronic pain forum. I had no idea what this condition was until I looked it up and read about it on several web sites. From what I read it can be a painful condition but they said if caught early enough the condition can be eradicated. How in the world did you end up with this condition. There are several ways a person can end up with this condition. I am going to assume that after you did the three weeks of dialysis your kidney function returned to normal.

I can understand the sleeping problem, pretty much anyone that has chronic pain has sleep disturbances. I was given something for sleep too, except I was given 7 days worth by the dr and thats it. He said no more than 7 days because of people becoming addicted to sleeping medication.

From what I have read about this condition, the dr that tried you on Neurotin was on the right path towards treating your pain and was correct in it being a nerve type of pain. Perhaps had you stayed on it and had the dosage increased over time the Neurotin may have been the winning ticket in getting the pain level down. That is how Neurotin works is by increasing the dosage until you reach that magic number, a lot of patients do not know this. They expect it to work immediately. There are other drugs used off label for nerve pain like the Amitriptilene you were tried on. That is another one of those that has to build up in your system over time,. It can help with nerve pain and sleeping. All in in all it sounds like thr drs were on the right path but for whatever reason none of the treatment was followed thru on.

There are several medications available to treat nerve pain and some of those as I said above are used off label. You may not know this, but normal pain medications has little effect on nerve pain that is why drs use the other medications that help nerve pain.

You may do well by getting in with a pain mgt dr since treating pain is their specialty. From what I have read in your post it sounds like this condition has affected your foot. sDid you have some sort of accident or what and injure your foot?

I suggest that get on the internet and read up on this condition. The more you educate yourself about it, the better off you will be and it will help you understand the condition. When I did a google search on it, I found many excellent reputable web sites to read at to learn about this.

Take care and keep us posted on how you are doing.
Moderator Chronic Pain Forum

hatethehurt
New Member


Date Joined Jun 2013
Total Posts : 2
   Posted 6/5/2013 8:25 PM (GMT -6)   
Ih8pain,

I'm not an internet type...this is new for me but your post hit me like a ton of bricks. I think you and I should talk. I too had the misfortune of being struck with Rhabdo. I contracted a severe case as well. I got it during a very physically challenging military training in very hot weather. Guess this kind is called "exceptional rhabdomylosis". Its been roughly a year since the injury and I have not been able to shake the incredible pain in one of my legs. Its painful most of the time....tho there are times (a good day here or there) when its not quite as bad. I have been treating with the same doc since I completed dialysis about 3 mos after the initial injury. I can't tell you how many times I've heard "rhabdo doesn't have any long term effects".....to that I say: MY BUTT!! (as polite as i can put it). I have been on different pain meds over the year and what works best for me has been percocet....but the doc obviously wanted to initially treat it as a short term course of treatment. So I've been on and off the pain meds all year....take em for a few weeks then taper off. Pain off the meds is intolerable.

I'm not sure how this forum thing works but if you can email me directly that would be great....otherwise if you reply to my post my email will notify me and we can get in contact. I'm in a different state than you. I'm sorry for the cloak and dagger routine but I'm not all that comfortable posting so much personal info...

I was hospitalized for 16 days. for the first 5 days the docs tried every trick in the book to try to jumpstart my kidneys.....nothing worked and by day 5 I coded twice. They put the dialysis catheter in my neck (on my death bed and I still remember how gross that was)......dialysis saved my life (and the docs and nurses). They wouldn't discharge me with the catheter in my neck...so they did a "tunnel catheter"....which was much better...I could actually sleep without rollin over on it.

I've done physical therapy, hired a personal trainer, taken pain meds, taken anti depressants, muscle relaxants I've had an mri of my back....multiple rounds of corticosteroid injections into hip, back and SI joint in an attempt to see if any of those spots were causing the pain. Scans look normal and injections had little effect....And whatlittle effect they had lasted such a short time its just sorta worthless. I'm also at a point of total frustration. Through my own research I've found something that might be what my problem is....called CRPS complex regional pain syndrome.

Hope to hear from you

hatethehurt
New Member


Date Joined Jun 2013
Total Posts : 2
   Posted 6/5/2013 8:30 PM (GMT -6)   
sorry that shoulda read "exertional rhabdomylosis"...

i walked into the er thinkin i needed an iv and was just dehydrated. Doc was smart and checked my blook. cpk=187,00. creatine was already at 6. eventually went up to 21 on day 5.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/6/2013 1:43 AM (GMT -6)   
Locking this and starting another topic as it's more than a year old
Moderator - Chronic Pain Forum

Full body CRPS, Dystonia, EDS, Dysautonomia (multiple issues) Osteoporosis, Fibromyalgia

SCS, Intrathecal Baclofen/Morphine pump, multiple oral meds - feel free to ask.
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