am I alone with this??
 

so I had an MRI and while in it it felt like all the RSD affected areas where being ripped away from me all at once.. has any one else had this happen ..



also the skiing on my feet is peeling in large chunks.. extremely painful and the layers are like 1/4 inch thick.. and it is a constant thing lately is this a common rrsd thing too??

Me foot peeled the same way :/ It has stopped peeling now

I had the extreme skin peeling in the beginning, but it stopped.
As for the MRI, I never got one. Do you mean "ripped away" in a good way
like taken away, or as a painful ripping feeling?

I have issues with mris now I have to be totally sedated as the vibrations from the mri puts me in flares and my body just burns. Being sedated really helps for me

The feeling is a ripping feeling like the flesh, muscle,and bones are being ripped apart...I have asked my dr,s and PM just said "INTERESTING" my neurologist is clueless,,, so who else do I ask.. my spine specialist is just that ..spine My PCP isn't handling this case as she doesn't take COMP.. its scary.. and probably the worst pain I have ever felt..plus the after effects just won't leave me alone now...

I've had an mri since my rsd started but never had any problems from it

I just had an MRI this past Wed although it didnt feel like my skin was being ripped off (i know that feeling all too well so sorry ur dealing w/that) I did deal w/it setting everything off. I could hardly move afterwards they brought a wheelchair out for me but I was so set on just gettin out the door I said no thanks & my mom could just see the pain in my face she got me in the car & headed home which felt like hours. I was so glad to get to my meds after I got home I didnt think to bring any w/me so now I know for the next one I guess just not sure how long til I have the next one done. As for the peeling skin I cant say I have had that happen sounds painful Im so sorry..Here if u need to talk tho anytime I'll be thinkin of you all wishing good things for everyone

I had an MRI yesterday with no problems, although I did have a few weird muscle ticks at times, particularly on the heavier sounding scans. I always get weird sensations in them from the vibrations, but luckily not much pain, and I see colours flashing if I close my eyes.... The only time I've mentioned it to a doc, they said pretty much the same thing! "Interesting..." :rolleyes::D

Sorry you have such pain in them, must be horrible. hope you feel better soon :)

Bram :hug:

For the first time last week I had an unbearable experience... It's the darn vibration that some of us as so sensitive to. I never had trouble in the past, but now with inflammatory processes going on all through me have gotten worse, I am reacting to everything... I'm deeply fatigued now with this.

Best to you all. Keep up with the rest and being good to yourselves.. :hug::grouphug:

Isn't it just fricking incredible all of the unique symptoms we have with this beast???

I have had MRIs with no additional symptoms but boy, with CRPS.......as the old saying goes......your results may vary.

Tough to stay on top of things. I'm always so ultra-nervous when I feel something new on top of the laundry list of symptoms that I'm used to by now.

And I need a knee replacement to boot. Not going to happen until I can't walk.

I have been using meditation in the mornings to help me with pain control. Sounds new age, but folks....it really does help. As much as the meds seem to do anyways. I'd throw the kitchen sink at this if I could just do without my kitchen sink!:crazy:

Hang in there Painman. Tomorrow is another day.

Hana,

I don't recall what meds you are taking. Do you have anything for breakthru pain??

I had an appointment with my PM today. Have been going to him for the past four or five years. Have tried all the procedures, etc., including trial. While I dislike taking all the meds I take; they are helping me get thru each day. I take Oxycontin which provides me with around the clock pain med; but there are times throughout the day where the pain gets pretty bad. I usually do not wait for the pain to get out of control before I take my breakthru med (Percocet); which really helps.

Just wish you could take something in the meantime to better control the terrible pain you are dealing with. Has your PM doctor suggested any additonal meds to help deal with breakthru medication?



Gerry

Hi Gerry,

Yes, you have it right to stay on top of the pain before it is too much. I am at about my limit now for what my body can take.

I am onPercocet up to 15 mg/ day for breakthrough pain , Metaxalone for breakthrough spasms,fentanyl 37mcg in patches, alternating every day,,, Neurontin 2700 mg, valium 10, split AM/PM..flector and liocaine patches.. I have literally tried about everything at one time or another and like you, have difficulties getting these things through the midsection. Oxycontin and methadone worked better than either Fentanyl or Percocet, but I got gastroparesis/IBS constipation that wouldn't abate until I'd literally gone through withdrawal. (Not even miralax, lactulose and mag citrate together worked)

The doctors now are just letting me say what I need and will prescribe appropriately. I am on less than I was at one time ... of course with the sacrifice to pain, but I choose to be coherent and functional, and while I still have ability to enjoy life I am staying low on the meds,

Prayers for a good day. :Heart::hug::grouphug:

Hana

It sounds just terrible..I hate that this is happening to everyone..God bless you all.I know mris wear me right out.had to use wheelchair just to get out too..Wonder why???I did not have any skin issues ..It sounds very painful..it must hurt terribly..I will pray for you all.:grouphug:

My wife's feet and fingertips had issues with skin pealing. She also had severe issues with MRIs. Her last 2 MRIs where performed on an "Open MRI" These do not have tubes but are open where she sat upright in a chair sort of thing. Google it "Open MRI", there are a few in my area and may be in yours too.

Hana,

I have been dealing with the constipation issues. That's the awful downside to these meds. Even wound up in ER over a year ago because getting impacted. I pretty well remain coherent in spite of them. Now take up to two Miralax a day, plus.

I assume it was the Oxycontin/Methadone that causing you the constipation. I have never used Methadone; but continue with Oxycontin and dealing with the nasty constipation. Can't imagine going thru Oxycontin withdrawal. Just was a few hours late from my every 6hrs of Oxy and started withdrawal. Was very painful.

Is your constipation much better?? Is the Fentanyl patch the replacement for the Oxy? I would think Percocet would still have a constipating effect.

Unfortunately, a year and half ago because rectal cancer; rectum removed; but enough muscle kept so I do not have bag. Still dealing with daily "potty" problems.

Was suppose to have Coloscopy in December. Did Mag Citrate at noon and a full bottle of Movi-Prep at 6:00 p.m. Next morning at 7:00 a.m. had to drink another bottle of Movi-Prep plus 16 oz. water. Was to have nothing after 9:00 a.m. Colonoscopy was set for Noon that day. After drinking the last glass of the Movi that morning; all came spewing out across the table. Went to hospital hoping enough was emptied. Got changed into hospital gown, etc., but was not cleaned out enough and sent home to reschedule.

GI doctor now wants me to take a couple of Mag Citrates, plus extra Movi-Preps and liquid diet a few days prior to prepare; especially because of dealing with narcotic meds . So far; haven't rescheduled. Just can't get myself in a "good place" to deal with this and all the other pain issues.

Pray for us to get thru each day, taking it "one day at a time".


Gerry

Hana
I don't know the details of your medication other than what is in your post above. I wanted to just throw in a thought or two on the fentanyl and bowle management for what its worth.

You are on a fairly low dose of fentanyl. It is a medication that has no upper dose limit. I'm obviously not advocating endless dose increases but if you don't feel that it is doing much in terms of pain relief then you should be speaking to your doctor about increasing the dose to an effective therapeutic level. For CRPS pain, it would be quite normal to be on a dose of double your current dose, or more. At least try the drug at a more potentially therapeutic level before you write it off as insufficiently effective.

It would be very odd to be changing the fentanyl patch every day - I am assuming that what you say "alternating every day"? Have I misunderstood you? The patches are designed to release the drug at a constant rate over 36 hours. They can be prescribed on a 48 hour change cycle but if it is being changed ever 24 then something isn't right and, again, the dose needs to be reviewed.

You may find that a change of patch type would be more effective for you. Fentanyl patches use 2 different drug delivery approaches - reservoir or lattice. The reservoir patch has a pool of liquid drug and the lattice patch looks just like a piece of sticky scotch tape or Sellotape with no liquid. The two types are not interchangeable so whichever type you are prescribed, is the type you need to keep being prescribed. However, you could have a "one off" physician managed swap to the other type to see if it works better for you. If I have misunderstood what you mean about alternating, then sorry.

Fentanyl is potentiated by concurrently taking paracetamol (acetaminophen in the USA). In other words its painkilling effect is made greater and it is more effective if it is taken with acetaminophen. Unfortunately, a lot of doctors, especially those who aren't pain management specialists, aren't sufficiently aware of this so patients don't always get the best advice. Of course, not everyone can take acetaminophen but in order to maximise the effect of your fentanyl a good doctor would prescribe the maximum daily acetaminophen dose of 4 grams per day. Of itself, acetaminophen is unlikely to give you any noticeable pain relief from the extreme pain of CRPS but that's not the point of taking it in these circumstances.

Opioid induced constipation is a side effect that your body will not get used to in time. Everyone has to decide what is right for them but my personal view is that if the opioids are helping, then even severe constipation is a price worth paying. I will not get CRPS remission so I know that I will have to take opioids for the rest of my life to manage my pain. That's just how it is and it means I need to take powerful laxatives - the gentle types are a waste of time so there is no point. I assume Bisacodyl is available in the US? It is a more powerful laxative and its effect can be increased by increasing the dose and/or using Bisacodyl suppositories. None of it is pleasant but its a matter of finding and ensuring you regularly and continuously use a sufficient quantity of strong enough laxatives. Trying to just use them intermittently or use low doses might seem better for your body but it actually creates more problems.

There is another option if you can't get an acceptable routine with diet, hydration, laxatives and softners and that is an irrigation system like Coloplast's Peristeen system. It is very effective for chronic constipation. Its clean and simple once you get the hang of using a bowel irrigation system. It is NOT the same as colonic irrigation - that is completely different from these medical bowel management systems. They have to be prescribed by a physician after a proper medical assessment. Again, CRPS is for the long haul so the bowel management routines are for the long haul too, a mindset that its something that will go away will only lead to frustration and misery.

Just my thoughts for what they are worth.

Thank you for all the input. From Hana's post, It has appeared to me the Fentanyl might be less constipating. Your post seemed to have cleared it being less constipating because of her taking a very low dose.

The constipation issue is something not often dealt with on NT. I finally realized trying to take laxatives more one day, less the next, only led to the constipation being worse. Your post was most reassuring.


Gerry

I am taking ocycodone(percicept) morphine, fleiril, trazadone, vimovo, cymbalta.. nothing works well enough though where I can just take it and be on my way..

Gerry
I was more coming from the perspective that the "relatively" low dose of fentanyl could be a cause of Hana's less effective pain relief so she might want to look at a higher dose and potentiating with acetaminophen before she decides it doesn't work sufficiently well for her.

I wasn't trying to say that her dose was "small" and therefore less constipating. The reality is that any dose of any opioid will often be very constipating. The effect is compounded and made worse by the fact many of the other drugs in a CRPS patient's cocktail will also have constipation as a side effect. Its a matter of managing the constipation effectively with a suitably powerful regime in the long term rather than stopping and starting and living with the false hope that it will go away or improve.

Painman
The key to living with the pain of CRPS is to rapidly abandon the hope or idea that you will be able to find some drug or mixture of drugs that will allow you to be pain free and"on your way". It doesn't work like that. The very best you should expect is that your pain levels will be reduced to some extent. You then have to decide if the reduced pain levels you achieve are sufficient to warrant the side effect profile you get from that particular mix of medication.

Accepting the pretty unpleasant reality that you are only going to be able to try to manage your pain levels rather than 'getting rid of your pain' is fundamental to living with chronic pain. It doesn't mean you are giving up or not trying - it is possibly the single most important (and difficult) step in the process of learning to live with CRPS.

see Ihave accepted this beast as part of life, what I haven't accepted is the treatments they are offering. do not confuse the differences.. I have studied this beast as well as the next so much so I am more knowledgeable than My dr,s.. (about RSD any how) so I know remissions are far and few. But I do know that keeping me on the same cocktail for 5 years isn't progress, its plateauing . so where as the treatment remains the same aside from the injections blocks etc. My RSD has spread from the right leg to areas from the waste down, both arms and part of my skull. plus my back is getting worse as well as my neck due to the way I walk and move. when I say up and go I mean bring my pain levels out of the sky from 1100 to 9. It would also be nice that all of My drs research this beast as much as I do so when I go to them with issues such as Skin pealing in thick layers, and MRI causing bone ripping pain they would say more than just "INTERESTING" this is a neurological infliction I would presume a neurologist could answer these questions, but thus far none have. JOHNS HOPKINS Dr,shad nothing to add either, and all the specialty places such as the crps research center in Florida and the CRPS institute in Manhattan. They do not take insurance there for they will only see patients with money who can afford a 700 consult just to come up with the same DX I already went to them with..I mean come on...I have to come to sites such as this to see if my symptoms are seen amongst other sufferers and ask how they deal with it.. why bother having Dr's at all at this point.. the past two weeks I have been suffering the worst pain I've gone through since the beginning of this mess I have no way to budge the pain.. and that is unacceptable.. I am disappointed I m angry, and tired of being in pain and watching this beast control my body and life.. I am not one to lay down and accept defeat so I will not be OK with saying there is no cure.. there is one its just no one is looking into it because there is no money in healing people like us just money in giving out worthless pain meds.. and for people who are loaded ?? they are the ones who get stem cell treatments..(yes these are stem cells from your own body no-one ws hurt to get them) but Pain drs would love to shove a spinal cord stimulator up my bum.. or a pain pump.. how about using some time to properly map the pain signals.. and monitor your natural chemicals to see what changes during a flare.. I will never give up on a cure, I will continuously look for remission, I will fight for a better life until my last breath .. who ever told you that accepting defeat is the better way should be looked at .. it sounds like government propaganda.. there is no person animal or plant that deserve less than a full life.. FULL meaning whole body,mind,and quality of life....I assure you that is what we all agree on here other wise we would not pull together on sites like this....god bless all ,, here is hoping for a pain free day, and the hope of cure

Right painman. I took that much and couldn't be on my way,anyway... :sorry: for being:Off-Topic: in your thread..

Hi all... sorry I haven't been able to sit long enough to respond, and like many of you, I have 2 fingers working,that fumble a lot...
Gerry, My goodness, you've just been through hell!! I don't blame you for not wanting to go back for another procedure. It would be hard for me or any of us to be in a good place, either. We all have a limit for how much we can take and we all need time to breathe, as RRae said to me very recently. Maybe it's okay to know your limits and not have it until you're ready? I I know your husband provides comfort, but does your doctor know how you are managing? Friends? I'm concerned for you and your health. Support is so key to healing, and whether you have the procedure are not, we want you to heal and be out of pain.:hug:

I hope to answer some... questions... first, I've taken or tried most narcotics, antiseizure meds.. antidepressants, antispasmodics... and on and on. I could send a list.
I do use fentanyl instead of Oxy for many reasons, especially that it lasts longer,is less psychoactive and doesn't cause as much constipation. Acetomenophen toxicity has already happened! 4g= PTSD! And Neurochic, gastroparesis is not the same as constipation. I had illeus for 8 days last year not do to lack of proper maintenance.. Nope, my gut doesn't respond well to colon blows, even though I occasionally need them. ...at least most you mention. For us with GI issues, it may be more complicated. :Dunno: I am seeing that I probably do have the autoimmune stuff going on now as well... another puzzle.


Anywhoo, prayers for healing your way,:grouphug:

Hana

PAINMAN:"how about using some time to properly map the pain signals.. and monitor your natural chemicals to see what changes during a flare.. I will never give up on a cure, I will continuously look for remission, I will fight for a better life until my last breath .. who ever told you that accepting defeat is the better way should be looked at .. it sounds like government propaganda.. there is no person animal or plant that deserve less than a full life.. FULL meaning whole body,mind,and quality of life....I assure you that is what we all agree on here other wise we would not pull together on sites like this....god bless all ,, here is hoping for a pain free day, and the hope of cure
__________________"

I agree with you painman.:Good-Post: We are fighters here.. looking for relief, finding that doctors don't have all the answers we may seek. The best we can do is to honor our bodies and acknowledge the beast:eek::eek:... ever seeking cure, and life beyond our painful experience. When I realized that taking care of this body is a privilege and not a burden, my depression began to subside...not that I like it!! NO. I love me, NOT the beasts. I was given this body for a reason, had my experiences for a reason, and so I am trying not judge that or to fight me. It only feeds CRPS.. Weneed gentle defusing and calmness. My SNS needs the PNS to kick in a bit more.. I do adaptive yoga, meditation, massage when I can afford it, accupuncture and have cranio-sacral help from a DO covreed by insursance, All medical stuff- the bright lights, attitude by doctors, insurance woes and treatments take energy and can be depleting.:Head-Spin: It activates my CRPS if I'm not careful- if I don't take time to notice how I am doing.
A few days ago RRae had to remind me to BREATHE!! :rolleyes: Bless you RRae for that!!:Heart: I am taking a week off from my appointments and wont see the surgeon again for 3. Only we know what we are able to tolerate for treatment and it's a very personal decision. Hats off:Tip-Hat:to ALL for the really tough choices we have to make. IMHO there is not a "wrong one" if it is for the betterment of your life.

Holy moly, my body needs a rest now! :OuttaHere:

Prayers for all of us to be painfree in this lifetime. Many many. :grouphug::circlelove:
Hana

Hana: take time to get wind back in you.... I agree that things happen for a reason and sometimes we do not understand it.. Amen to that.. and to address each other is what this site is about.. its not highway robbery( :) ). I absolutely agree.. don't do procedures in the Dr,s or Insurance companies time frame.. only when you are ready.. physically and mentally.. my PM is trying to push that damne SCS on me.. .. ... Ger good luck in your decisions.. and be well

Hana

I made the comments about constipation because you'd mentioned it in your post where you said "...I got gastroparesis/IBS constipation that wouldn't abate until I'd literally gone through withdrawal".

I am very aware that gastroparesis and constipation are entirely different but from what you wrote I'd assumed that you did have constipation which abated once you'd gone through withdrawal. If I have incorrectly understood then apologies. Hopefully my post will still be helpful to others even if it doesn't apply to your situation.

I had an MRI a few years ago on my stomach to locate cysts and endometriosis and had no problems. I just had another MRI a few weeks ago on my hips and spine and that same night I had unbearable pain in my hips. It felt like stabbing pain deep in my bones. It was horrible. I don't know why this happened but will ask my pm dr when I see him next week. Not sure if anyone will know but it can't hurt to ask. I think it's related to rsd. I don't know why, but I just do. I have osteopenia and osteoarthritis in my hips that are causing me alot of stiffness and external pain , but the pain I had in my hips after the MRI was different. It was that deep aching pain. It only lasted one night but I'll never forget it. It was really scary.