I'm new here and need advice

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Kelly in Newfoundland
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/20/2009 3:30 AM (GMT -7)   
Hello all,
   I developed acute compartment syndrome in my right leg in 1995 from a crush injury. I had severe pain for a couple of years after. While it subsided, it never really went away. It would get bad in the fall and into the winter. 75 mg of lyrica twice a day did keep it in check.
about a year ago the pain began increasing to a severe level, with regular episodes of outright mind numbing stabbing attacks that are like a wild lightning storm.
   I titrated up to 450 mg of lyrica. Aside from the fact that it only reduces the pain by about 20%, I am unable to function because of the loopiness.
    I had a sympathetic nerve block on July 29th and I got two days of relief before the pain came back. A recent EMG showed that there is no response below the knee in any of the nerves. The damage was quite severe and there was little recovery.
Yesterday my GP recommended adding 10-20 mg of elavil at night. If that provides sufficient relief, I can then try lowering the lyrica to a manageable level, somewhere around 200 mg per day. I wasn't that loopy at that level.
  I am back in the pain clinic on Sept 8th. If the above does not work, I know the next step is narcotics. Up until recently, I would never have agreed to go there. However, at this point, I will try anything. If the elavil does not work, I don't really have any other options, do I?
I guess that is my question. Does anyone have any advice?
   Though we have great doctors here, I wonder if we are a little removed from the mainstream here on the island!
 
regards and thanks!
Kelly

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 8/20/2009 5:42 AM (GMT -7)   

Hi Kelly,

Welcome to HW, we are a FAMILY of caring and empathetic people!  All of us are here with CP from different causes!  The emotional ups and downs, symptoms and frustrations are shared in our posts!

I am so sorry that you have joined us.  You mention that your husband is an M.D., what is his specialty?  Are you currently working with a PMD?  Most of us have been where you are when our only answer is to use Narcotics to control our pain!  I did a google search for your condition and Hyperbaric Treatment was mentioned, have you tried that?  I live in Phoenix and we have several of these facilities in town.  I worked for an M.D. Homeopath for all of my career until I could no longer work due to pain.  I have extensive nerve damage in both legs, had a reaction to Lyrica 2 yrs ago, so I can no longer take it.  I do alot of alternative methods in an effort to control the pain from this and a triple cervical fusion 9 yrs ago.  Nothing totally takes the pain away but with Medication, homeopathic remedies, laser treatments and acupuncture it is more tolerable!

The first step is to find a Pain Management Dr. that understands your condition and will work with you to find a medication regimen for relief!

Again Welcome to our family!

XXOO
Patti 


Kelly in Newfoundland
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/20/2009 5:53 AM (GMT -7)   
Hi Patti,
Sorry for the confusion, but my husband is not an MD. Actually, he is a sailor!
I am seeing a PMD. He is the one that did the nerve block on the 29th. I see him again on the 8th of September. I starting adding the elavil last night. I know it's too early to tell, but I am feeling good this morning. We are in the middle of a thunder and lightning storm. That is normally when my pain goes through the roof. If it is working, I would really like to lower the lyrica.
On the 10th of September I as seeing a highly recommended massage therapist that specializes in deep fascia therapy. I am hopeful about that.
What kind of reaction did you have to the lyrica? I have been on it for 3 yrs with no problems except the extreme loopiness at high doses.
There is also an accupuncturist here who is considered one of the top three in Canada. I may also try and get to see him.

I will mention the hyperbaric treatment to my PMD on the 8th. Thanks so much for taking an interest. I suspect the weather in Arizona would be much better for me than this rainy island!

Kelly

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 8/20/2009 6:10 AM (GMT -7)   

Duh Kelly,

Its the drugs lol, I read another post and confused it with yours about the MD...so sorry!

The reaction I had to Lyrica was a slow progression, when I first started at the 50 mg. dosage twice a day, I did notice relief.  Shortly after I started to notice leg swelling!  I saw the PA in my PMD's Office and he increased the dosage slowly to the dose of 300 mg. at Bedtime.  For the 1st time in 9 yrs. I was sleeping comfortably.  He did that in month 4 of being on Lyrica.  The leg swelling became severe, I started getting Palpatations, I would forget mid sentence what I was talking about.....my memory was the only thing that I could count on and when that started happening I was frightened as was my husband.  I gained 20 lbs. from Oct to April (no diet changes).  I was in the middle of PT and my muscles were so weak I told her I could not go on.....I was displaying symptoms of a Stroke.  I saw my PMD and a cardiologist that day and they both agreed along with the Pharmacist it was a Lyrica reaction.  They weaned me off and the 2 frustrating symptoms that remained was the weight gain and I was diagnosed with Lymphaedema.  I never had leg swelling before, so this was a permanent side effect that along with the nerve damage gets very uncomfortable!  So I am unable to use Neurontin or Lyrica to control the nerve pain.  The alternative treatments I do, do help!

Arizona used to be the place for Allergies, arthritis and many other health challenges but people relocated here and brought with them plants, trees from other regions etc.  Arizona is actually the worst place to live for these conditions now...especially allergies.  Pools have added humidity to the hot hot summers, so no longer are we blessed with a DRY Heat of 20 years ago.

Good luck and I hope you have a low pain day!

XXOO
Patti


Smoochie
Regular Member


Date Joined Jun 2009
Total Posts : 71
   Posted 8/20/2009 7:24 AM (GMT -7)   
Kelly
All I can offer is that we all did not want to be on narcotics but if it comes to that and that is where your relief can be found then that is what you will do right? I , like most everyone else on here have tried all the things they offer and narcotics was our last resort. I am hopeful that the other things you have mentioned will give you the relief you need, but if not and you need to go the narcotic route we will be here to talk with you and give our advice anytime, I wish you the best and I hope your pain is at its lowest today. : )

P.S Good Name
Kel
 


infinite
Regular Member


Date Joined Jul 2009
Total Posts : 84
   Posted 8/20/2009 9:49 AM (GMT -7)   
Hi Kelly,
I too would like to welcome you the the community! I have been on Lyrica for about 3 months now, and it is what I believe allowed me to get completely off of narcotics. I am taking 7h mg's 3X daily, and while I admit that I am not pain free, I say I am 50% better than I was before. I honestly believe that narcotics have no effect on nerve related pain, all they do is make you not care abou tht epain you are in. so, you live in a fog. I did some research recently and would suggest you discuss with your Dr's how Cymbalta and/or Neurontin might help in your case. I have to make a call to my Dr. (crazy work schedule anyway...) and ask the same.

Anyway, I hope you are doing ok, and I realize it will be late for you, but you are welcome to discuss this more in the chat room tonight :)

N8

Centurion45
Regular Member


Date Joined Jul 2009
Total Posts : 23
   Posted 8/20/2009 10:20 AM (GMT -7)   
Hello Kelly, I am from New Brunswick, just across the pond.

None of us want to be on Narcotics! I would much rather not have any pain and be able to do all that I use to be able to do. I cannot. For me, it has been 25 years of learning to live with this every day. I started using Tylenol and for years it worked, then T1's and after awhile T3's. As time went on and I got closer to an actual diagnosis, I was experiencing increasing pain. Severe Stenosis and some other problems was the icing on the cake.

I went through a pain clinic and had recomendations go back to my GP about how to handle it and for the last couple of years, I have been using low doses of narc to control the pain. I do not experience any loopyness and am at a level were I still have pain every day. It is up to me to monitor my pain level and use the Extend Release Meds and IR meds responsibly. They don't take all of it away and that is a choice that I have made for me.

I also have used Elavil from time to time. I find it drops the pain as well. For me, though I find it gives me a hangover the next day, regardless of the dose that I take. I keep it in reserve, for when I need REM sleep as it forces me into a deep sleep and for that I am thankful.

I do hope that you find some solutions for yourself!
25+ Years, Sciatica, Lumbar back pain, Severe Stenosis L3-L4, DDD, Chronic pain - because the acute pain was never treated, Duh!


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/20/2009 10:06 PM (GMT -7)   
Hi, Kelly,
I also want to welcome you to the forum. I think you've been given some good suggestions, especially about trying cymbalta, which is an anti-depressant designed to also help with pain. But for me as for many others, my meds. regimen has ended up including narcotics. My cousin is a pharmacist, and she has told me narcotics actually are easier on the body for long term use for pain. They don't affect our organs as much. I take percocet and really don't find that's what makes me groggy; but I also take neurontin (a lot like lyrica, but an older version) and while it helps the neuropathic symptoms and other nerve pain, I believe that's what makes me groggy. But I know when I'm even late for a dose that I need it.

BTW Patti, if you read this, I am not wondering if it's been the neurontin that's both caused my weight gain (about 20 lbs., although I was eating a lousy diet for awhile after my surgery - pure emotional eating!). I also have some ankle swelling, and all the tests have come back negative for PAD, etc. and I bet it's the same thing you're dealing with. Have you ever heard of lymphatic drainage? It's a form of massage that requires specialized training, but if you have the money you might look around for a massage therapist trained in it. It is used for post-surgical breast cancer patients by the Cleveland Clinic. If I had the money I'd go regularly to the therapist who tried it on me. It's a very different type of massage; very, very light touch, designed to release the lymph at the cellular level. Just a thought.

Againi, welcome Kelly!

PaLady

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 8/20/2009 10:43 PM (GMT -7)   
Hi Kelly!

Welcome to the CP family. It's sad any of us have to come here but I am so thankful for the friendship and understand. Without this wonderful group I would be doing a lot worse and that frightens me.

I thought I would address your comment on taking narcotic drugs. I have been on them for several years and they work as well as can be expected and I am able to function as if I wasn't taking them...for the most part. I too would have never thought I'd be at this point in my life. I was one who never even took an aspirin or tylenol for the first 35+ years of my life. Then everything sort of did a slow implosion...lol This poor body is a wreck but my heart would like to feel young. Having a good understanding of what is wrong, a wonderful medical team to work with and friends who are supportive makes your life very livable.

Back to the medications. I too couldn't take lyrica because of the loopy feeling. I'm very sensitive to those types of medications. So it's pain meds that keep me going. I was afraid of addiction and/or dependency until I educated myself and realized that what I needed to do was be watchful and respectful of the medications but there was no need for fear. A while back I was reading a study on the Arthritis Foundation web site about narcotic medication used for chronic pain and the number of people who became addicted. Over time they found that less than .5% (that's half of one percent) became addicted to the pain medications. It was as if the pain "used up" the addictiveness of the narcotics and as long as they are taken as prescribed there is rarely a problem. Now your body will become dependent on the pain meds which is totally different than addiction. I found a web site that has good descriptions of how pain medications work and the problems people may have using them. This is the link to the site and below are a couple of quotes from it. I found this a very good read for me too even though I've been on these med's for a long time and have read a lot about them. Rereading is a good idea for all of us.

I hope this helps. Please don't feel bad at all about needing pain control with whatever medication it takes. That's what they are for. Some people either don't need them or choose not to use them and that is fine too. But if you need stronger pain medication and are aware of what it can and can not do, then you are just as fine taking it as others might be taking their heart medication.

Keep in touch...
Chutz

http://www.healthcentral.com/chronic-pain/coping-279488-5.html

"Physical dependence is the body's adaptation to a particular drug. In other words, the individual's body gets used to receiving regular doses of a certain medication. When the medication is abruptly stopped or the dosage is reduced too quickly, the person will experience withdrawal symptoms."

"In a review of 24,000 patients who were medically prescribed opioids, only seven could be found who got into trouble with them".
Play fair. Don't hit people. Say you're sorry when you hurt somebody.
~Robert Fulghum

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 8/20/2009 11:09 PM (GMT -7)   
Kelly

I will second what Chutz said and everyone else, I kind of look at narcotic pain meds as any other type of medication. You take Metoprolol to treat high high Blood Pressure, or Zocor to treat high cholesterol, or Insulin to treat diabetes, all these medications people take to treat some medical condition, and each one of these medications your body becomes dependent on, and if you suddenly quit taking them you will get sick. So Please tell me what is the difference about taking a narcotic pain medication, I take Oxycontin to control my back pain, if I suddenly stop or if I miss a dose my pain comes back with a vengence! I am dependent on this medication to keep the pain away, just like I am dependent on Metoprolol to keep my blood pressure down. It is all the same! It is just that the narcotic pain meds have gotten a bad rap because of a few people abusing them. But there are allot of other medications that are abused to, and that doesn't mean they are not good to treat the conditions they were made for!

Anyway I do want to Welcome you to the Healing Well Chronic pain forum. I am sad that you are in pain , and need to come here! But I am glad you have found us, and hope that you will join our family here! I honestly believe that there is none better than the folks you will find right here at this forum! I hope you will stay and post often and share what ever you want to share with our group! We are always here to listen and support you!

Again I say Welcome!

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 8/21/2009 6:13 AM (GMT -7)   

PALady,

I do have lymphatic drainage done by my massage therapist.....it does help!

XXOO


Kelly in Newfoundland
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/21/2009 3:55 PM (GMT -7)   
Hi All,
Thanks so much for your interest and taking the time to respond. I have been on 10 mg of elavil, along with my twice daily 225 mg dose of lyrica. I know it's early, but the added elavil seems to be helping. I hope to be able to lower the lyrica to about 250 mg per day. The loopiness really impairs my function at about 300 mg/day.
I had a long talk with my pharmacist and GP about narcotics and I have a better understanding of how they work and where people get into trouble. An oncologist/pathologist friend of mine said that someone in my situation who had to go the narcotic route would  be dependant on the narcotics in the same way a diabetic would be dependant on insulin.
If and when it comes to going down that road, I am not as opposed to it as I was before. Meanwhile, we are trying this option. I should have a better idea in a few weeks if it is working. If it doesn't, than the only thing left is narcotics. I have never had a substance abuse problem. I am now armed with knowledge about how narcotics work and a healthy respect for using them properly!
 
To Patti in NB, I hope you folks don't get too battered by Bill! He's expected to hit NL Sunday night. I guess the next 48 hours will tell.
 
Cheers to all,
Kelly
 
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