!!!!!Chronic pain while cruising!!!!!

[emmacruises00]

I was recently diagnosed with CRPS (Complex Regional Pain Syndrome) also known as RSD (Reflex Sympathetic Dystrophy) and RND (Reflex Neurovascular Dystrophy) in my shoulders, neck and arms, and now it has spread to my legs. It is a chronic nerve-related condition that only affects 1% of the population. It is excruciating, exhausting, and incurable. Anyways, I am an avid cruiser, and plan to cruise again in the future. Early in my injury (CRPS is usually caused by an injury, and I had bursitis and tendonitis), I sailed on the Liberty of the Seas, and Carnival Breeze. It was okay, but certainly not the best vacation ever .

So, if anyone else has any kind of chronic pain, do you have any tips on how to get the most out of your vacation while in excruciating pain?

Thanks so much!

Emma

[xxoocruiser]

I was recently diagnosed with CRPS (Complex Regional Pain Syndrome) also known as RSD (Reflex Sympathetic Dystrophy) and RND (Reflex Neurovascular Dystrophy) in my shoulders, neck and arms, and now it has spread to my legs. It is a chronic nerve-related condition that only affects 1% of the population. It is excruciating, exhausting, and incurable. Anyways, I am an avid cruiser, and plan to cruise again in the future. Early in my injury (CRPS is usually caused by an injury, and I had bursitis and tendonitis), I sailed on the Liberty of the Seas, and Carnival Breeze. It was okay, but certainly not the best vacation ever .

So, if anyone else has any kind of chronic pain, do you have any tips on how to get the most out of your vacation while in excruciating pain?

Thanks so much!

Emma

 

Because of the color of type chosen your post is very difficult to read. Suggest re-posting and leaving the type color back.

[frecgenswl82]

[quote name=emmacruises00

So, if anyone else has any kind of chronic pain, do you have any tips on how to get the most out of your vacation while in excruciating pain?

Thanks so much!

Emma[/quote]

Pace yourself, rest when you can. If you need a scooter use it. Make sure if you have pain meds from your Doctor, try them before you cruise. I have had some new medicine and it took me a few days to discover the side effects and how they affect me. Susan

[IRL_Joanie]

I was recently diagnosed with CRPS (Complex Regional Pain Syndrome) also known as RSD (Reflex Sympathetic Dystrophy) and RND (Reflex Neurovascular Dystrophy) in my shoulders, neck and arms, and now it has spread to my legs. It is a chronic nerve-related condition that only affects 1% of the population. It is excruciating, exhausting, and incurable. Anyways, I am an avid cruiser, and plan to cruise again in the future. Early in my injury (CRPS is usually caused by an injury, and I had bursitis and tendonitis), I sailed on the Liberty of the Seas, and Carnival Breeze. It was okay, but certainly not the best vacation ever .

So, if anyone else has any kind of chronic pain, do you have any tips on how to get the most out of your vacation while in excruciating pain?

Thanks so much!

Emma

Lots of Pain meds and a rented Scooter get me through the pain and allows me to enjoy all of my cruising:)

 

Even with my severe osteoporosis (I break bones just sitting) and degenerative disc disease (to the point that I have a Spinal Nerve implant in my spine), With the scooter I am good to go and only have to take the pain meds when I absolutely have to, not on a regularly scheduled basis. For me the pain comes when I either stand for to long, try to walk to much or try to take a step or 2 in order to get into a bus.

 

As I said, Pain Meds and Rental Scooter work for me:)

 

Joanie

[Valentine's Mom]

For me it is knowing just how much my body can take and not to let over zelous people talk you into just trying something. Use your meds, scooter, and common sense. Also the staff is usually more than willing to helpwith anything like helping to carry food extra pillows and just about anything else.

[selma]

Have you considered doing a chronic pain management program? They are not about curative (as the biggest part of those suffering with chronic pain can not be healed), but are about learning how to go beyond surviving with pain and/or being pain/letting pain dictate you and get to a point where you have the tools to go to a place where you can live again, which happens to also involve chronic pain.

 

Good programs within the rehabworld consist of 2 big pillars; physical and emotional/psychological. Both are essential to learn how you can optimize them, as it are pilars that influence eathother. Physical you can think about stuff like learning how to become your own therapist and get the best out of your physical capabilities and keep doing that. Common therapies are physio, occupational, hydro etc. etc.

 

The other pilar always consists of phsychologist one on one. Many programs add on, wisely. Think about stuff like group moments (sharing can be very important), therapy apart and together with the significant other in your life (who tend to get dealt a rough card also, also have to go through their own process), but also all kinds of things that focus on rebuilding life and who you are. For instance sportstherapy, job rehabilition, relaxation therapy, you name it.

 

And then there is a more general.... learning part. "Simply" learning how fysically and biologically pain and chronic pain function within the body. How signals over time get crossed, where that comes from, how to interprete certain signals etc. etc. But also; how do pain medications work? For instance many folks have no clue that only using meds when they already feel such pain they constitute it as a need for painmeds, they've already gotten themselves in a bad situation, where now because of biological, physiological etc. aspects the same dosage will have less impact as it would've had they taken it before hitting this moment. Or how keeping up a level of said meds in their blood will have the best result instead of incidental usage. Obviously no reason to just pop pills "just in case" but very much needed knowledge imho. Same as how overusing can come with other risks, like not or too late notice symptoms that scream "you are doing too much, stop, stop right now". And many more things that stupidly enough is basic information but too often does not gets handed out to patients into enough depth, unless in these types of programs.

 

These programs are very confrontational and in that regard can be very though. It leaves no stone unturned. Fysical training is something most will not find that difficult, it's all the other stuff that comes along with it. Grieving about what you lost. Letting go of some dreams you had, changing expectations, learning about pitfalls you have that result in making things worse for yourself, literally opening yourself up emotionally, reset where need be, rebuilt from there on. Not easy when going for it full force, but so valuable.

 

Again; not curative, but proper programs (which are becoming more and more the norm worldwide) have amazing results when focussing on something much more important (imho); how one experiences their quality of life. Huge improvement for very large numbers of participants and quite a large to huge group that can even reduce their pain medication significantly.

 

You might wonder why I'm posting this when you are asking about cruising. Well, tools you get handed out and learn to use during thee pain managements programs are life skill tools. Not only can you use them for "normal daily life" and see positive results there, but they are a huge tool to get the most out of situations that you find more difficult to balance it all. Which happens to include cruising for you. It's a long term investment, but with a pay off you can use for the rest of your life very much worth it.

 

 

I can sum up all kinds of things, but it all comes down to that one thing; good pain management programs. It all ends up having their roots there. Only thanks to those tools can I honestly make the right decision for me, instead of for instance going on a short term "I want, i want, i want", only to be faced with a too high a price. Thanks to those tools I know where my personal limits are with regards to medication usage ment for vacation and basically always grabbing for them to somehow somewhere overdo it. Nice and peachy if I know which decisions I'm making and I'm willing to pay the consequences of it, utterly stupid if I grab for any pills based on shortterm "I want, I want" and end up with a undesirable consequences because of it. Where the same tools also make it easybreasy to get assistance or use an aid, because I can very easily oversee the price of going that route or another. Where the same tools make it very visable where for short(er) term want I can cross my limits and to where the price that come along with that is acceptable to me. Which avoids any "acting up" against "rules" but also helps me avoid crossing my limits by 10 miles because I don't directly feel the difference between acceptable crossing or crossing it waaaaaaaay to much, but do end up paying the price for it very much so.

 

Basically it's a crashcourse on all involved subjects to be able to become your own manager of quality of life, health(care) and chronic pain.

[TN56]

I would recommend the power- wheelchair or scooter (I have done both) and takes meds as needed. My experience on RCL is that the crew is very helpful!

 

If you want to do an excursion - call the excursion & ask if they can accommodate handicapped individuals. I have been amazed at the positive responses. I got to go helmet diving in Bermuda. :-D

[katrina915]

I have chronic neck and back pain from car accident. I need to make sure that I don't overdo it but still have fun. I manage with extra OTC pain meds, thermacare pads, heating pad and good supportive shoes. I also bring my own pillow wherever I travel. I get up and stand up/walk during long sitting sessions such as lunch. Also try to do stuff that I enjoy doing and try to ignore the symptoms as much as possible. Good luck!

[mamaofami]

Emma and Joanie, I suffer from chronic nerve pain in my leg from sciatica.It's hard for me to walk long distances and travel with a travelscoot. I've been wondering what pain meds you find to be effective?

[frecgenswl82]

Emma and Joanie, I suffer from chronic nerve pain in my leg from sciatica.It's hard for me to walk long distances and travel with a travelscoot. I've been wondering what pain meds you find to be effective?

 

I am not either of the poster you quoted. I also have sciatica pain. I was recently put on muscle relaxers for the pain. The one I was put on is tiZanidine, for me it has less of a dry mouth affect like I got with Flexiral (sp). It took me a couple of days to get used to the side effects. I was also given some other type of pain relievers. Susan

[IRL_Joanie]

Emma and Joanie, I suffer from chronic nerve pain in my leg from sciatica.It's hard for me to walk long distances and travel with a travelscoot. I've been wondering what pain meds you find to be effective?

 

What actual medications work best for me, I have to say Tylenol 3 (Tylenol with codeine). I have Oxycontin, Oxycodone and Hydromorphone, but am scared to death to take them. They do not seem to last for a long enough period and if I take them on a near continuous basis they are highly addictive....So I do not take them!!! I found that while I seem to have to take the Tylenol 3 every 4 hours (when needed, it is not a definite every 4 hours) instead of the directed every 6 hours, it really works best for me.

 

I also use Carisoprodol (Soma) at night for muscle relaxing enough to get to sleep.

 

Joanie

[selma]

I have Oxycontin, Oxycodone and Hydromorphone, but am scared to death to take them. They do not seem to last for a long enough period and if I take them on a near continuous basis they are highly addictive....So I do not take them!!!

 

Two things;

 

- too short lasting can indicate two things; too low a dosage or too long in between dosages

 

- fear for addiction is a common thing for those who are prescribed or even just mentioned by their physician. Yet, that doesn't always fit reality. Addiction is a very high risk for those who take it with..... well..... unlegit reasons. Like wanting to numb emotional pain. Very high risk of addiction indeed because of how it influences the brains and neurons. There is a almost instant psychological addiction, which is very hard to beat.

 

However usage when in severe pain; different ballgame alltogether. Numbers are incredibly low for what we as a society and as medical community call addiction. Risk of psychological addiction is (much) lower than 5%. There is some higher risk of fysical addiction, which can result in symptoms occuring when stopping meds. That is why it is adviced not to stop cold turkey but in steps (also better to rull out bounce-back pain as much as possible). After a max. of 14 days; physical withdrawel symptoms are all gone. Yet no signs whatsoever in most of psychological addiction. And where a psychological addiction would have you battling that craving signal from the brain and leave you basically to some extend volnurable to relapsing, that is not the case with a fysical addiction. This all has to do with how it influences the brain differently when used correctly. But that would go way to deep into details and def. is something to have explained by a medical professional.

So please, don't make decisions based solely on fear but rather do yourself the favour of gathering all info so you can make decisions based on facts in order to find whatever treatment it is that works best for you.

 

Don't get me wrong, been there done that. Had a stigma image of addiction risk, yadiya so to say. ;) It resulted in me keeping my mouth shut way too long about my levels of pain, knewing that I would end up being offered to add opioids into my paincocktail. Silly and stupid, I know now. Finally I opened my mouth, but way too late and after way too much unneeded pain. Didn't believe my GP when he explained me the differences and how low my risk of addiction would be, but lo and behold the painspecialist told me the same. Showed me enough data to support it. Basically just what I needed to be able to get passed my own fears and go by facts. Decided to give it a try and found for me fentanyl patches are the best option for that part of my cocktail. Sure enough; no addiction ever since (have been using it for years now). Not psychological, nor fysical when stopping (have been in some crisis situations where an acute stopping needed to happen). Only time I get symptoms that basically are withdrawel symptoms is when I had to move from applying my patch from every 3 days to every 2 day. Common thing to happen for a group. Yet, it does not mean it will result in needing a higher dosage later on. Same for me.

 

You know, any medication can be abused and become part of someones addiction pattern. Nowadays an amazing number and sorts of medication already gets abused for addiction. Very few of them have the bad and wrong reputation that opioids do with regards to becoming addicted when using for proper medical reasons and within guidance. It's kinda like how some still have the wrong picture of the usage of some anti-depressants for chronic pain, anti-epileptica for chronic pain etc. They are legit painmanagement medications and being prescribed them as a chronic pain patient rather makes them being prescribed for the pain than anyone thinking the individual were depressed or an epileptic. Just because something has one usage, does not mean using it equals fitting that "reason of usage".

 

I would be the last to advocate using opioids for any and all pain. It's not the first choice medication for a very very good reason. But, sometimes an opioid can be needed as a main treatment or part of a cocktail. The individual always has the end deciding factor and it shouldn't be different. I also get the fears and other emotions that can come along with some of the more heavy medications. I'm simply posting this long posting to explain the risk of addiction with an opioid when using it properly for the proper diagnosis and proper guidance, the risk of addiction actually is very low. Because I know how wrongly these meds tends to be preceived and know how it can be a shame to make a decision based on fear but without all the facts. If one fares well on other options; great!!! But please, never let yourself suffer unacceptably because of fear of addiction. Take your fear seriously but also get all of the facts and take your pain and quality of life just as seriously. It would be a shame if anyone were to add onto the huge huge group I'm part of (once scared without facts and making decisions based on that and later on regretting it, knowing more and knowing much of the pain suffered where basically not needed).

 

It is not the right medication group for all, or at all times. But for some, sometimes it can be. Basically I don't wish my sillyness on anyone and wish any and all the best suited treatment for them based on facts and fittingness, without the burden of fear. Whatever that treatment is or might be.

[mamaofami]

Selma, my internist, pain doctor, and podiatrist all told me the same thing about the opiods.

[IRL_Joanie]

[/color]

 

Two things;

 

- too short lasting can indicate two things; too low a dosage or too long in between dosages

 

- fear for addiction is a common thing for those who are prescribed or even just mentioned by their physician. Yet, that doesn't always fit reality. Addiction is a very high risk for those who take it with..... well..... unlegit reasons. Like wanting to numb emotional pain. Very high risk of addiction indeed because of how it influences the brains and neurons. There is a almost instant psychological addiction, which is very hard to beat.

 

However usage when in severe pain; different ballgame alltogether. Numbers are incredibly low for what we as a society and as medical community call addiction. Risk of psychological addiction is (much) lower than 5%. There is some higher risk of fysical addiction, which can result in symptoms occuring when stopping meds. That is why it is adviced not to stop cold turkey but in steps (also better to rull out bounce-back pain as much as possible). After a max. of 14 days; physical withdrawel symptoms are all gone. Yet no signs whatsoever in most of psychological addiction. And where a psychological addiction would have you battling that craving signal from the brain and leave you basically to some extend volnurable to relapsing, that is not the case with a fysical addiction. This all has to do with how it influences the brain differently when used correctly. But that would go way to deep into details and def. is something to have explained by a medical professional.

 

So please, don't make decisions based solely on fear but rather do yourself the favour of gathering all info so you can make decisions based on facts in order to find whatever treatment it is that works best for you.

 

Don't get me wrong, been there done that. Had a stigma image of addiction risk, yadiya so to say. ;) It resulted in me keeping my mouth shut way too long about my levels of pain, knewing that I would end up being offered to add opioids into my paincocktail. Silly and stupid, I know now. Finally I opened my mouth, but way too late and after way too much unneeded pain. Didn't believe my GP when he explained me the differences and how low my risk of addiction would be, but lo and behold the painspecialist told me the same. Showed me enough data to support it. Basically just what I needed to be able to get passed my own fears and go by facts. Decided to give it a try and found for me fentanyl patches are the best option for that part of my cocktail. Sure enough; no addiction ever since (have been using it for years now). Not psychological, nor fysical when stopping (have been in some crisis situations where an acute stopping needed to happen). Only time I get symptoms that basically are withdrawel symptoms is when I had to move from applying my patch from every 3 days to every 2 day. Common thing to happen for a group. Yet, it does not mean it will result in needing a higher dosage later on. Same for me.

 

You know, any medication can be abused and become part of someones addiction pattern. Nowadays an amazing number and sorts of medication already gets abused for addiction. Very few of them have the bad and wrong reputation that opioids do with regards to becoming addicted when using for proper medical reasons and within guidance. It's kinda like how some still have the wrong picture of the usage of some anti-depressants for chronic pain, anti-epileptica for chronic pain etc. They are legit painmanagement medications and being prescribed them as a chronic pain patient rather makes them being prescribed for the pain than anyone thinking the individual were depressed or an epileptic. Just because something has one usage, does not mean using it equals fitting that "reason of usage".

 

I would be the last to advocate using opioids for any and all pain. It's not the first choice medication for a very very good reason. But, sometimes an opioid can be needed as a main treatment or part of a cocktail. The individual always has the end deciding factor and it shouldn't be different. I also get the fears and other emotions that can come along with some of the more heavy medications. I'm simply posting this long posting to explain the risk of addiction with an opioid when using it properly for the proper diagnosis and proper guidance, the risk of addiction actually is very low. Because I know how wrongly these meds tends to be preceived and know how it can be a shame to make a decision based on fear but without all the facts. If one fares well on other options; great!!! But please, never let yourself suffer unacceptably because of fear of addiction. Take your fear seriously but also get all of the facts and take your pain and quality of life just as seriously. It would be a shame if anyone were to add onto the huge huge group I'm part of (once scared without facts and making decisions based on that and later on regretting it, knowing more and knowing much of the pain suffered where basically not needed).

 

It is not the right medication group for all, or at all times. But for some, sometimes it can be. Basically I don't wish my sillyness on anyone and wish any and all the best suited treatment for them based on facts and fittingness, without the burden of fear. Whatever that treatment is or might be.

 

I do understand and believe exactly what you have said about REAL chronic Pain sufferers not becoming addicted to the stronger meds.

 

My Oxycontin is super strong dosage and is supposed to be 1 every 12 hours. However within 4 -5 hours after taking one, I am again feeling the intensity of the pain. And being the dosage is so high, I cannot safely take any other narcotic to ease that pain:(

 

Many people are unaware that Oxycontin is a synthetic Heroin and ..... It still scares me to think of it.....

 

Same goes with the Oxycodone and Hydromorphone.

 

So with the Tylenol 3 I can take it every 4 to 6 hours and not worry if I have to go to a 3 hour regimen instead, unlike the other 2 meds.

 

My greatest fear is that I could end up like Heath Ledger (Batman) who was on the exact same meds I am on, same dosage also and he had been on them legally for about 2 years when wham......It killed him:(

 

I do have an Eon Mini (Eon Mini™ spinal cord stimulation) implanted in my Thoracic spine and it works. Or I should say it did until this past November when either the battery got flipped (highly unlikely) or one of the leads became bent or disconnected. I am trying to get it fixed now, but am running into difficulties because the original doctor who did the implant no longer accepts my insurance and the other doctors in our area refuse to "Fix" another doctors work.........I am working with St Judes Medical to get this fixed ASAP.

 

Funy thing is that when I saw my Ortho Spine Pain Doc 2 weeks ago and I showed hiom all the meds that I have left, he told me that I have to have a much stroger pain level than I thought I did because anyone else with 5 compression fractures and 4 broken ribs would be screaming to be unconcious. Instead I am dealing with the pain as best I can and trying to stay within my limits.............

 

Joanie

[selma]

When oxycontin wears of within that limit, it is either a wrong dosage or wrong type of opioids. For instance with breakthrough pain I sometimes add on oxynorm (use fentanyl patches as my standard opioid which is obviously not first choice for breakthrough). "Standard" would be max. every 4 hours. Sometimes I break through that after 2 hours though. We can sometimes not break that by tripling the dose and 6 intakes a day, but CAN break it when just doubling initial dosage, but instead of every 4 hours a double intake, we go with every 2 hours the norm intake (and thus in a day double). Obviously all under guidance, but we've soon learned this works pretty much better for me and resulting in a lower daily dosage compared to upping but not changing the intake moments.

 

Same thing with longer term usage, apparently they've found some types of opioids loose their strength with a group of people, where switching them to another type of opioids at the same calculated end dosages does not and keeps their pain controlled properly. According to my specialist he's seen it pretty regularly with the oxy's. Have to say, have noticed the same for those 2 instances we had to add breakhrough meds for longer than a week or 3. Where a (temporary where possible) switch then to my fentanyl would do the trick for years. Outside of 2 explainable breakthrough period of months, I've been on the same dosage of my fental for about....... 6 to 7 years.

 

 

As far as Heath Ledger, hmmm. Much more going on there than just dropping dead on safe medical usage, safe dosage, proper guidance etc.

 

Obviously there can be all kinds of personal influences like for instance underlying other medical issues that can influence what one can safely use. But on general it is amazing how high of dosages and cocktails can be used safely, sanely under proper medical guidance for years on end without huge risks.

 

I get the scary thing behind knowing where some meds come from. But on the other hand, basically all our older meds are based on natural substances that can be abused. Pharmacy came along when turning nature into an industry. To me it's all about balance, facts, common sense. In the same line we now see pharmacy and medical world going back more to the "good old days" of centuries ago for certain treatments. Esp. on for instance chronic wound care knowledge as far back as the 15th century and before are becoming more implemented and used, incl. some of the actual products used back then.

 

Don't get me wrong. I mean I'm not blind to for instance the huge problem of abuse of prescribed medication, basically dealed through certain "pain clinics" within certain locations within for instance the US. I can tell you, it would scare me to death if it was part of my country/surroundings where I would also have to get my medical help from and sort out which is which. I mean, so many pushing and/or abusing through "legit" "medical" facilities, it would easily leave anyone wondering how to safeguard yourself from those places and get proper safe medical care where you can "just" trust your doc. Let alone to always be able to make the distinction between what is safe and what not, who now is on your side or might be running their own agenda. Such visual about how many abuse problems there are, it could easily make me have serious questions about the medication itself when confronted with it that much. And I've got years of usage with good experiences under my belt. I can see how that "alone" can influence sentiment so much. Just like we have our own troubles and struggles, that (un)conciously influences how I see some subject surrounding healthcare here.

 

And again; I would be the last to ever push any of these types of meds on anybody. Not my place, period. I just posted it because I know how rampant the fear is and how poorly known (even sometimes in some medical professionals) it is that addiction isn't a rampant risk as it seems to be. Would be a shame if anyone would pass up an option that would otherwise fit them out of pure fear.

 

 

Anyhow, have you and doc been able to get a clear pic of what type(s) of pain you are dealing with that you would want to shave of a bit to make more manageble? For types like neuropathic pain for instance, there are other types of meds that tend to work much better than opioids for this type of pain. Same with for instance pain related troubles sleeping etc. etc. But boy could I see how difficult that would be to sort out in a fashion I would feel totally comfortable with knowing how pain management has partially become infiltrated with scum in your country. I "only" have to find a aneasthesiologist that specialized in pain management treatment and is knowledgable about my syndrome or is willing to learn given how rare it is to find any medical professional who knows anything about it. With that it can already be quite a long journey to find the right med or cocktail and sometimes be very confrontational when options are offered that can result in emotional conflict. Wish we could just do a "copy + paste" so you guys also only have to make that click instead of always somewhere knowing it is no longer a specialty that is always looking out on your behalf.

 

Don't know if it's an option with regards to your insurance, but was it looked into to put in a nerve block? Those can be put in also for a limited time frame, so you could manage until they sort out the other insurance troubles. It tends to be very succesfull for blocking such specific located pain.

 

Also if you haven't done it long time ago; mindfullness. As all no cure, but does add a positive weight to managing pain. Also there are some great tools being used in pain management rehab programs that can be very helpfull in reducing pain and/or getting more quality of life out of things. For instance the activity scale is a tool many find adaptable (and yes, it works with cruising also. A must after all :D )

 

Hopefully I'm just saying it way too many times, but rather one too many than one too little; again no judgement whatsoever from me about what one wants to use or not and why. As long as it fits ones needs and wishes, is legal, safe and sane; I'm all for travelling your own road and not one-fits-all.

[sarahscottiedog]

I do understand and believe exactly what you have said about REAL chronic Pain sufferers not becoming addicted to the stronger meds.

 

My Oxycontin is super strong dosage and is supposed to be 1 every 12 hours. However within 4 -5 hours after taking one, I am again feeling the intensity of the pain. And being the dosage is so high, I cannot safely take any other narcotic to ease that pain:(

 

 

Many people are unaware that Oxycontin is a synthetic Heroin and ..... It still scares me to think of it.....

 

Same goes with the Oxycodone and Hydromorphone.

 

So with the Tylenol 3 I can take it every 4 to 6 hours and not worry if I have to go to a 3 hour regimen instead, unlike the other 2 meds.

 

My greatest fear is that I could end up like Heath Ledger (Batman) who was on the exact same meds I am on, same dosage also and he had been on them legally for about 2 years when wham......It killed him:(

 

I do have an Eon Mini (Eon Mini™ spinal cord stimulation) implanted in my Thoracic spine and it works. Or I should say it did until this past November when either the battery got flipped (highly unlikely) or one of the leads became bent or disconnected. I am trying to get it fixed now, but am running into difficulties because the original doctor who did the implant no longer accepts my insurance and the other doctors in our area refuse to "Fix" another doctors work.........I am working with St Judes Medical to get this fixed ASAP.

 

Funy thing is that when I saw my Ortho Spine Pain Doc 2 weeks ago and I showed hiom all the meds that I have left, he told me that I have to have a much stroger pain level than I thought I did because anyone else with 5 compression fractures and 4 broken ribs would be screaming to be unconcious. Instead I am dealing with the pain as best I can and trying to stay within my limits.............

 

Joanie

 

Hi Joanie I looked up yhr Eon Mini as I have never heard of it here in the uk, take a look at this link, hope it is of some help

http://www.girardgibbs.com/blog/eon-and-eon-mini-spinal-cord-stimulators-recalled-by-st-jude-medical/

[HopefulCruiser123]

Emma and Joanie, I suffer from chronic nerve pain in my leg from sciatica.It's hard for me to walk long distances and travel with a travelscoot. I've been wondering what pain meds you find to be effective?

 

I think that is how it is spelled. It's the generic for neurontin, which I believe is an anti seizure medicine. After a couple of years of trying to deal with really exhausting hip and leg pain from a bulging disc at my lumbosacral spine, my general practitioner prescribed neurontin because it has a real nice side affect of dulling back pain and pain associated with spinal conditions, and it helps with sleep. I had tried physical therapy and then when that didn't work I stopped doing everything (no walking, no running, no exercising). Now I take one at night before I go to bed and the pain no longer keeps me awake at night (and it was really excruciating). I started working out again and I even am able to do 5k and 10K power walking (though I doubt I will ever be a runner again).

 

It might be worth it to ask your doctor about it.

[IRL_Joanie]

Hi Joanie I looked up yhr Eon Mini as I have never heard of it here in the uk, take a look at this link, hope it is of some help

http://www.girardgibbs.com/blog/eon-and-eon-mini-spinal-cord-stimulators-recalled-by-st-jude-medical/

I knew they'd been recalled for patients who wee suffering burns when charging but since that was not my problem I did not have to worry........

 

BUT.............NOW reading about the welds failing as the article mentions................I AM SO DARNED THANKFUL TO YOU FOR POSTING THIS LINK!!!!!!! Yes, I know I yelled, but I NEED to get across just how thankful I am to you for this!!!!

 

I called the St Jude's Medicals main Office 3 times since the beginning of the month, the last time was Monday of this week. I was literally in tears as I talked to the woman in Customer Service and told her that the Dr who implanted the unit no longer accepts my insurance and no other Dr will touch another Dr's work, stated to me last week by another Specialist in the field.....So what am I to do? Am I supposed to pay more than $60,000 to have the darned thing removed? Am I supposed to fix what is actually a problem with the unit not of my making?? She said she would send an inter office memo to the Legal Department head (she gave me the lady's name) and gety back to me.

 

NOW, with this article I WILL BE CALLING them tomorrow and demanding they do something and do it fast!!! I am not a demanding person, but I think in this case, now being aware of the recall for the welds, I am in the right!!

 

Thanks so much!!!!

 

Joanie

[HopefulCruiser123]

I knew they'd been recalled for patients who wee suffering burns when charging but since that was not my problem I did not have to worry........

 

BUT.............NOW reading about the welds failing as the article mentions................I AM SO DARNED THANKFUL TO YOU FOR POSTING THIS LINK!!!!!!! Yes, I know I yelled, but I NEED to get across just how thankful I am to you for this!!!!

 

 

Joanie

 

I love this site!

[IRL_Joanie]

I think that is how it is spelled. It's the generic for neurontin, which I believe is an anti seizure medicine. After a couple of years of trying to deal with really exhausting hip and leg pain from a bulging disc at my lumbosacral spine, my general practitioner prescribed neurontin because it has a real nice side affect of dulling back pain and pain associated with spinal conditions, and it helps with sleep. I had tried physical therapy and then when that didn't work I stopped doing everything (no walking, no running, no exercising). Now I take one at night before I go to bed and the pain no longer keeps me awake at night (and it was really excruciating). I started working out again and I even am able to do 5k and 10K power walking (though I doubt I will ever be a runner again).

 

It might be worth it to ask your doctor about it.

 

I know that most people will never have any adverse reactions to the medication Neurontin, BUT I have to warn anyone thinking of taking it to MAKE SURE that you NEVER take more than 1600mgs of it daily!!!

 

Back in 1999 -2000 I was on it at slowly increased, and approved, dosages by both the Doctor and Pfizer (the maker) and after one increase in dosage over a 3 day period, lost my vision.

 

According to the Pfizer pharmacist, I am in the 1 percetile group that reacted negatively to it.

 

Jusdt want to ward anyone thinking of taking it to be aware that if you have any concerns..........

 

Joanie

[HopefulCruiser123]

I know that most people will never have any adverse reactions to the medication Neurontin, BUT I have to warn anyone thinking of taking it to MAKE SURE that you NEVER take more than 1600mgs of it daily!!!

 

 

Joanie

 

WOW! That's a lot! Maybe I should clarify that the ONE pill I take each night is 300mg. As with any medication, consult with your physician.

[DisneyGem]

I was recently diagnosed with CRPS (Complex Regional Pain Syndrome) also known as RSD (Reflex Sympathetic Dystrophy) and RND (Reflex Neurovascular Dystrophy) in my shoulders, neck and arms, and now it has spread to my legs. It is a chronic nerve-related condition that only affects 1% of the population. It is excruciating, exhausting, and incurable. Anyways, I am an avid cruiser, and plan to cruise again in the future. Early in my injury (CRPS is usually caused by an injury, and I had bursitis and tendonitis), I sailed on the Liberty of the Seas, and Carnival Breeze. It was okay, but certainly not the best vacation ever .

So, if anyone else has any kind of chronic pain, do you have any tips on how to get the most out of your vacation while in excruciating pain?

Thanks so much!

Emma

 

Hi Emma,

I find my lowest pain flares or needs for pain control on a cruise. The warmth is key, hot tubs, relaxing, not doing daily routines, etc.

I do use the rollator, not a walker, that I can lean onto walking the ship or excursions. Relieving pressure and being able to sit during waits kept me from flares.

 

I do carry a script of steroids if I swell. Not just hands, but you know the ballon swell feeling. Other then that the endorphins flow and it is the best week ever.

 

My biggest complaint is finding a lounger or chair near the pool or hot tub, climbing the deck stairs or walking around more then I need to stresses the nerves. If I can find a spot to sit on the pool area with a hat and sunscreen I am happy. A dip in the hot tub, then a nap.