Tuesday, December 13, 2016

CRPS & Medication Update - "Poly Pharmacy 2.0"

Hi everyone! This post is going to be geared toward CRPS. I have been wanting to post this for weeks and I have finally have a bit of energy so here it goes....

I posted about Neridronate a few posts back and if you would like to hear more about that, click HERE. There are some great comments including information on how to go about having those infusions. Thank you to Marty who has posted her experience in the comments and gave amazing information!

For those that found me through a Google search, welcome! My name is Mellissa and I was diagnosed with CRPS type 1 after having 3 knee surgeries for a torn meniscus. Since then it has spread several times. My husband and I moved from PA (cold!) to FL (warm!) just over a year ago. I have some wonderful doctors down here which has allowed me to try some new things.

I read two books recently on CRPS. Please note these are just my opinions and you may feel differently. The first was "Putting Out the Fire" and is now $23 on Amazon ($10 for an e-reader). The first half of this book has some great information if you are new to CRPS. It does touch on what supplements to take and what dietary information is available. The second half of the book discusses this particular doctor's method of treatment. She is a chiropractor and her method incorporates different machines and non-invasive methods. I believe (again, just my opinion) a few of her methods are similar to Calmare.  

The second book is called "CRPS Survival Guide" by Chris Allen. This book is $50 on Amazon ($30 on his website as an e-reader download). This book has a lot of information. It is written by someone who had/has CRPS and goes into more detail. It also gives great information about vitamins/supplements, different treatments (including Neridronate, Ketamine and more) and what you should/shouldn't be eating. There is also a chapter titled "Poly Pharmacy 2.0". This group of medications was given to the author by a doctor in Germany and helped him greatly.

Because I have tried almost everything out there in the last 3 years, I researched the group of medications and took the top 4 (they are labeled "critical" in the book) to my doctor for review.

I have been eating radically different (my diet consists of raw spinach, berries, bananas, chicken breast, raw pecans and honey), taking the recommended supplements (a few include vitamin C, vitamin B12, omega 3, vitamin D and a multi vitamin) and doing physical therapy on my own. I have been seeing both pain specialists, two CRPS doctors and my family doctor and was given the chance to take these medications without traveling to Germany.

I am not a doctor and am far from it so please (please) check with your doctor before starting any of these. They may not be for everyone.

Here are the four medications: 


1. Naltrexone 4.5mg - this will most likely have to be compounded for you. This is a very low dose of Naltrexone and was also prescribed to me by Dr. Hanna from the Florida Spine Institute. It is a fairly common prescription for those with CRPS. However, you will have to be off of narcotics & most other pain meds before taking it.

2. Pentoxifylline ER 1200mg - this is a blood pressure medication. Now I don't have blood pressure issues (thankfully!) and so I am taking only 400mg. I would love to work my way up to the recommended dose but anytime I go over 400mg, I start to have side effects.


3. Amitriptyline HCL 75mg - this is an anti-depressant that works on your central nervous system to increase the level of certain chemicals in the brain. I am currently on 1/2 of a pill, so about 37.5mg, and am trying to work my way up to a full pill.

4. Memantine HCL 10mg - this is a medication for those with dementia. I have yet to start this medication.

I am taking two other medications along with these but these are the four specifically mentioned in the book. The book does touch on other medications but these were the "critical" (their word) ones for CRPS.

My pain specialist gave me the green light to get myself off of narcotics and start these. He knows how hard I've been trying and is monitoring me along the way.


Here is my experience:

I had to be off narcotics for two full weeks before starting these. That was rough. I stopped at the end of October which meant I couldn't start these medications until Nov. 14, 2016. My doctor did prescribe Ambien to help at night and agreed that it was fine to take a partial pill during the day if the pain got to the point where I couldn't take it. A month later, I'm still on it. I have decreased my dose and hope to be off of this soon. But, if I need to be somewhere (i.e. the doctors) and am having pain, I do still take a bit of Ambien which does help with the nerve pain.

I had absolutely no side effects to Naltrexone. This is usual because the dose is so low. And I have been on this in the past.

My blood pressure is normally on the low side of normal and so I am currently only taking 400mg of Pentoxifylline when the book suggests 1200mg. My doctor is amazing and told me to start low since I may have side effects. The side effects from this medication have been being extremely light headed whenever I move my head. I haven't blacked out completely but my vision does go black and I hear that rush of blood to my head (it sounds like when you put your ear up to a seashell). I have been on this medication for a month and it still continues. But now I know to be careful whenever I change elevations.

I have also had side effects with Amitriptyline. I started at 1/4 of a pill (about 19mg) and did okay. I have since upped that to a 1/2 pill. I have tried 3/4 pill and struggled. My side effects range from exhaustion (sleeping 16 hours a day) to feeling a tightness in my chest and feeling very winded. It isn't scary thankfully but I would struggle to speak several sentences in a row. Now, I do have anxiety which was diagnosed after Ketamine 11 months ago. So I am sure that is not helping. But again, it doesn't freak me out. It is just there. I have also had nausea, headaches, dry mouth, dry lips and pain in my eye sockets. It is more of an aching pain behind my eyes but it is there. I'm also sensitive to any light so occasionally I have to wear sunglasses or stay in a dark room. These go away if I drop the dose back to 1/2 pill which is what I have been doing. I've experimented a few times and they come back at 3/4 pill. I know my body is very sensitive to medications (and foods) so I'm sure this wouldn't happen to everyone.

The book suggests getting up to the full dose (75mg) before starting Memantine. Memantine comes with its own side effects and supposedly taking the full dose of Amitripyline helps with these side effects. I haven't yet been able to take this last pill.

Are the side effects worth it? Yes. I start to think they aren't when I'm having less pain and kind of "forget" for a few minutes that electric feeling that seers your inner body. But I would choose exhaustion, aching eye sockets, dry mouth and being winded over pain any day.

Can I jump back into my "old life" at this point? Nope. Two days I ago I was only awake for 6 hours the entire day. I am struggling to speak without having to catch my breath. But compared to a month ago, the nerve pain is getting better.

Before these medications, I was taking narcotics and taking them regularly. Even with them, I would feel like wires were being jammed in my nerves. The electric feeling like you are on fire within would be pretty bad at times and sometimes just cause me to wince. I would not have been able to walk a small grocery store even with the narcotics. Because I have CRPS in the front of my hips, sitting was also hard to impossible. Sitting compresses the nerves which makes the pain shoot down the front of your legs, ankles, feet.

I have seen a change since taking the medication so far. It has only been a month but I feel like my body sometimes has more oxygen. I have had 3 amazing periods of time (lasting 1-3 hours) where instead of pain, there was a cool feeling in my nerves. If you have CRPS,  you can probably trace exactly where the pain is. It isn't a vague "oh, it is in my lower leg" feeling. You know exactly where it is and how sharp it can be. The burning may be more vague but that electric shock can be traced exactly.

I cannot even describe how those 3 periods of time were. I felt such a difference in my body. The absence of pain was incredible. I haven't felt like that in a very long time. Of course my mind, during those times, jumps right to "what can I do" and "how soon can I go back to work", thinking that they would last. They didn't but it was enough to give me hope.

I went for blood work today to see how my levels are doing. They checked everything from vitamin D to liver function to cholesterol. I have been working very hard on not overdoing it but I did walk around an actual store last week during one of the good times and it was amazing. Was I hurting afterward? Yup. But it was wonderful. I was probably on my feet for 10 minutes. That was the first time I walked for 10 straight minutes probably in well over a year. Sitting is still very rough, even after a month on these meds.

One thing I hope to be able to do is go to a movie with my husband. We haven't been in 18+ months and it would be such a fun thing to do. The CRPS spread to my hips early November (2014) and it would be really rough for me to sit through a movie now. We watch TV shows at home if I'm up to it but I lay down on our couch and can move if the pain gets bad.

It has been a tough road. I am a firm believer that everything happens for a reason and I absolutely know that God has been using CRPS to teach me lessons and hopefully use me, whether now or in the future. You can easily search "Ketamine" or "Calmare" on this blog and see that I have had real hope before. And so it is a bit scary to try to believe that this will work long term since nothing has.  But try I will and I will hopefully keep you posted.

(Again, these are my opinions and thoughts. I get absolutely nothing from you purchasing either of the books. Feel free to leave your thoughts in the comments. I appreciate hearing from those with CRPS and how they are coping.)




18 comments:

  1. Hi Mellissa! I have been following your blog for quite some time now. I am always AMAZED by you and your positive attitude and perseverance. You TRULY are an AMAZING person. I do not have CRPS. However, I do have chronic pain. It has been 12+ years and I still have no idea why. Countless doctors, test, meds, therapy...etc... I know from my own experience how difficult it is to keep a good attitude. Some days I just can't. I wanted you to know that there have been several of those days that I read your updates and your strength and positivity have lifted me out of my despair.
    I don't think I have ever commented but I wanted to let you know that. I follow your journey and pray for you often. You are an inspiration to SO many. Thank you for your posts/updates. Always wondering how you are doing.
    Prayers & blessings,
    Jen

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    1. Jen - you have touched my heart with your comment. I am SO sorry for your pain. Over 12 years...yikes. You are an inspiration. I only blog when I'm feeling up to it so I'm not sure I deserve any of your praise about a positive attitude. ;) I definitely have pity parties and times when it just is overwhelming.

      I don't know if you watch YouTube but I have been inspired by The Frey Life. She has Cystic Fibrosis and is amazing.

      I hope you have moments of joy & happiness in the midst of the pain.

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  2. God Bless you Mellissa xoxo

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    1. Thanks :) I appreciate your comment! He truly has. I hope he blesses you & your life as well.

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  3. Hi Melissa, wanted to thank you for this blog. I as well suffer from rsd. I noticed you are from long island and was wondering where in long island. I live on long island. I was wondering what drs you hv seen for rsd and also pain management. It's so hard to find drs that know about it and know how to treat. I pray you are doing better. Ty in advance for helping me wuth drs.

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    1. Hi and welcome to the blog. I'm so sorry you also have CRPS. It is a nasty thing. Yes, I am from Long Island. I grew up in Mastic but moved to PA after graduating from college. My husband and I lived in PA for 13 years and then moved to FL almost two years ago. My doctors were in PA and didn't specialist in RSD/CRPS. I was diagnosed 3 years ago so we usually went out of state for doctors. I've seen a doctor in NJ for Calmare treatments (3 weeks treatments in total) and then we found doctors in FL.

      I'm part of a group on Facebook called "Here to Help RSD" and I know they have a list of doctors by state. There are several people who live on LI over there.

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  4. which is probably the most popular pharmaceutical drug in the United States, get the same rush as they would taking heroin, totalerasure.com

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  5. Hi Mellissa. Thanks for sharing. We also purchased the CRPS Survival Guide, and have been skyping with Chris to learn more about both PolyPharmcy and the neridronate treatment program in Italy. My husband has had CRPS for 11 years, and we are seriously considering going to Italy and Germany very soon to get both programs. Can you tell me how you were able to get your doctor to prescribe the PolyPharmacy here in the states? That could save us some serious travel, which as you know, if horrible for pain patients. So glad you are seeing relief from the PolyPharmacy! If you are on FB, please search for me and private message me. Have a blessed day, Jan Typher

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    1. Hi Jan! I have seen the doctor for more than a year. He knows what all I've tried and how hard I've worked in adjusting my eating & therapy. I took him in an excerpt from the book where it states about Chris using those medications. I chose 4 of the meds from the book to highlight. He then agreed to let me try them. He said to start with one and introduce them one at a time in case I had any negative side effects. He also ordered blood tests for before I started, one month in and then 3 months in to make sure my liver & kidneys could take me playing around with meds.

      This particular doctor is a pain management doctor, not a CRPS specialist. He was previously prescribing narcotics and I really did not want to be on them. I stopped narcotics 2 weeks before starting to introduce the medications. It was a hard few weeks.

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  6. Please contact me as I have info on a trial for CRPS it just started and their are locations in your area that have not started yet (2 have). The trial is fully funded and no placebo. I put a previous comment up however I don't think see it published. Email me at searay25@aol.com. And I will email you all of the info. I truly hope this could help you

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  7. Hi Melissa! I'm in FL too (Tampa Bay), and have had CRPS since 2004. I went into remission a couple times, but then it came back in 2012 with a vengeance. I was reading about your medication juggling, and wanted to ask if you had ever heard of the Pain Rehabilitation Program at Mayo Clinic Jacksonville? I did that 3-week outpatient program, and was able to come off the majority of my medications, including opiates! The program didn't take the pain away, but did teach me how to deal with it better, and have a much better quality of life. There are still days I struggle, but 2 years out from the program and I'm having a lot more good days then bad ones...and I have a support group of others that finished the program with me as well.
    I know recommendations probably come flying in at you from all sorts of directions - try this, do that, etc, etc as nauseum. I had the same thing, and was tired of trying everything under the sun. The Mayo Clinic approaches it as desensitizing your Central Nervous System, and focuses on a combination of OT/PT/Group Therapy/Biofeedback, etc. I know I focus a lot less on the pain, and more on the positives of daily living. I encourage you to give them a call, and see when the next spot is (the sometimes have a long waiting list, as only 2 people can start a day).
    Gentle hugs to you today!

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    1. Thanks so much! I'm actually off of the pain killers and on a wonderful plan which is helping more than anything in the last 3 years.

      I'm so glad you were also able to get off the opiates and this is great information for others :)

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  8. Hi Mellissa
    I came across your blog today , when I was searching for information on RSD rashes, I have had RSD since 2012 and my body has been covered slowly over the past 4 months with the exact same rash as you have in your pictures and how you explained them , although mine gets itchy every once in awhile :( my drs. are at a loss as to what it is, did your dr by chance give you any answers as to what the rash is and how to deal with it ??? any information you can give me would be greatly appreciated

    Thank you
    Melody.

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    1. Hi Melody! I'm so sorry you also have CRPS. Yup, rashes are absolutely a thing with CRPS. I am part of two Facebook groups and this is a common "side effect" of RSD. The nervous system doesn't regulate itself well and so anything to do with the nerves (which is almost everything) is related. Mine itches sometimes too. Mine can turn any shade from red to purple to blue. I have "cold RSD" (which isn't a technical term clearly which means my limbs feel cold to the touch and I have a hard time sweating. Other people have "hot RSD".
      I have tried Lidocaine (creams and patches) for the itching which works okay as well as just regular anti-itch creams you can find at the drug store. Oatmeal baths would also work slightly. But I don't have anything past that. Sorry!

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    2. Hi Mellissa
      Thank you so much for answering back. I also have cold RSD :( although at the moment I am menopausal so I have no problem sweating lol , I could be pouring sweat and be ice cold frozen from the rsd at the same time so yippieeee lol , have your drs. given you any clue as to what they think the rash is ??

      Melody.

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    3. Hi again :)

      Mine wasn't a rash per say. I have broken out in hives/rash (with shingles and throughout my life) and that is more of a raised bump. Mine was just discoloration of the skin which made it look blue/purple/red. It tended to get itchy though that may have been the medication I was taking as well.

      Menopause sounds awful (isn't that an understatement!) I'm 37 so I have a few years ;)

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    4. Hi, again:)
      Sorry to be a pain , just you are the first person that I have come across that describes my rash to a tee. Mine as well is dicolortion of the skin ( some funky patterns too ) and seems to get brighter in colour if I am out on a hot day in the sun. By the sounds of your text I will assume that your rash has gone away ??? if so how long did it take for you and did you find anything that made it worse ?? so far mine started as a few Twoonie size spots on my thigh in January and now come May it pretty much covers 75% of my body :(
      You mentioned you were part of a facebook group , if you dont mind me asking which one , as it would be nice to get some more input as to WTH lol is up with this rash thing

      Melody.

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    5. Yes, mine covered my legs, feet, arms and hands - all the places I have CRPS. I could see it in my arms and thighs the most though. I am wondering if it had something to do with not moving enough. I just couldn't when my CRPS was bad. Now that I am feeling better and am able to get out of bed more, I am moving and my circulation seems better.

      And I completely agree - mine seemed to get worse (not itchier but the colors would be brighter or more noticeable) in the sun. I never minded the colors since they were one of the side effects of CRPS that didn't hurt.

      I don't mind you asking at all! Ask away! I'm not a professional in any way but I'm glad to answer any questions about me. It just might be a day or two since I am glad to say I've rejoined the outside world :)

      The Facebook group is called "Here to Help RSD".

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Thanks for commenting!