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CRPS Advancement and pain treatment.
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CRPS Advancement and pain treatment.

I am a type 2 diabetic that managed blood sugar levels fine until a diagnosis of CRPS (formally known as RSD). The pain from the CRPS seems to rake havoc on managing the diabetes and thus the two conditions feed off each other.

I have had 7 lumbar blocks and no relief. I have been on many neuro medication known - all causing drastic side effects. The worst was anemia. I've always had a severe sensitivty to medications, even over the counter medications. Prior to CRPS, I rarely ever even took an asprin.

About a month ago my pain took on a new level. Severe muscle and joint aches full body. The right foot was the original onset of CRPS, it's now traveled bilateral and up right leg. My right foot has gotten so bad that walking is often very painful, the left also has become problematic. The burning shooting pains in hands at this point have been manageable with biofeedback. This method has little or no effect on lower limbs.

I am currently not seeing any PM. The last prescribed methadone for my  pain. I refused the opiate as in the early stages of my condition I was on Morphine and became so depressed and had zero coping skills. It got so bad that my husband marched in with me to an appointment and demanded his wife back!  I had asked the PM for something lighter like darvoset or vicoden, my reason? I can deal with the pain during the day. At night the pain makes sleeping impossible. The mentioned narcotics take enough edge off and lower pain to a tolerable 2-4 level so I can sleep. These also do not leave me in a bad haze the next day. I currently have a some vicodens left from a severe UTI. A recent trip to diabetic specialists I acknowledged taking 1-2 a day and had concerns. He laughed and said many take 6-8 a day so no worries. I fear addiction and govern myself carefully.

I still work and would like to keep working for as long as I can. I stepped down from a office job and took a more physical job to keep moving.  The pain though is causing many issues, often times my husband notes that I am wincing in my sleep. I awake often, almost every hour with bad pains (shooters). I have little movement in right toes, full range of motion in foot has been lost. The foot discolored and toes show blueing.

I am seeing a neurologist soon as I've had it up to my ear lobs with PM's (no offense but 4 now want me drugged up). Is there anything I can arm myself with as to managing pain and a treatment course? I'm really at my wits end trying to positive. Oh and also it is suspect neuropathy may have also settled in due to prolonged high blood sugars since onset of CRPS.

Thanks for your time,

KB
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Hello KB,

Welcome to the Pain Management forum. I am so glad that you have found us. I admire your courage and ability to live without opiates and suffer through your pain.

I don't think you have cause for alarm when you see the neurologist. Normally will they  not try to push opiates on you. They generally offer other treatment options. But if the subject does come up just be assertive and express your commitment to avoid opiate usage.

Are you taking any medications such as Neurontin? These type of drugs can help in nerve pain and are not narcotics. Also for some ppl certain antidepressants known as tricyclic antidepressants can also help in pain control. These are also non-narcotic.  There are some major prescription NSAID that can also be helpful. You may have tried all these medications and I apologize if I am stating the obvious.

Has your A1c been elevated? Diabetic neuropathy may also be playing a part in your painful extremities, as I am sure you know.  

I have two concerns that come from my experience with chronic pain. One is that you gave up an office position that may have been more manageable given your chronic pain condition. Physical activity is good for all of us but you can add it to your daily routine without making it a work requirement. I hope if down the road you find you need a less physically demanding position that you will have the opportunity to return to the office.

Second concern is that you are admittedly not getting enough sleep. I am guessing that when you do sleep it is not even restful. I can relate to that. I quit sharing a bed with my husband during the week because in my sleep I moan in pain and even cry. As a busy professional that works long hours he needs his sleep. Muscle relaxers help me sleep although apparently I still have pain. Chronic pain is worse when we are deprived of a good nights rest. I think you may need something that will help you sleep. We feel better for the entire day if we are able to get good rest at night. If herbal teas, heating pads and all the normal things we do to help us sleep has not been effective than it may be time to ask for help from your PCP.

Please keep in touch and let us know how you are doing. We will look forward to hearing from you again. Best of luck to you.

Peace,
Tuck  
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Greetings Tuck,

Forums like this are a lifesaver in that the ability to talk to people who have or can relate to condition makes me feel a bit more sane :)

Meds: I have been on several of the "neuro" family of drugs. Lyrica, Neurotin, Keppra and a couple of others. All had really bad side effects. A former PM wanted to do a blood study on me, she heads the research at UW WI for pain research and was always baffled by the rare side effects I would get. Lyrica caused my head to sweat, I mean dripping wet, I started getting sores on my head. Keppra caused my blood platelletes to drop so bad that i was sent to an oncologist.  The side effects seemed worse then the condition itself.  ALL were also pointed as a reason my Kidneys having issues as well. I'm now on a medication to protect that area as my Endo feels the diabetes not to blame for that damage.

I was given Amitriptyline  to help with sleep. As soon as I researched an anti depressant I refused it. Early on I had some issues with another anti depressant - I actually felt nothing emotionally. I am a creative person by nature. I just felt like a 'zone" all the time - even when dosages changed.

AC1 has been elevated (on average) for over a year now. During 2 bad flare ups this year, I've rushed to ER because daily blood sugar read over 500. Gee- why was I seeing funny flashes of light? Normally I manage to maintain between 150 -200. I've been given instructions to up dosage of humolog when pain is elevated. My PCP and Endo feel neuropathy could also be present. It is also suspect that Rhumatiod Arthritis present.  Ya know I was healthy until I got married! *giggle*

As far as work, I feel my constant moving around is a good thing. I still work out 3x a week despite pain. I've always been told movement the best medicine. Although
admittingly it has gotten harder over the past 6 months. I work 4 days a week. 10+ hr shifts. I drive a specialized taxi for the county. Most days I want to take a hack saw to my lower limbs. Kidding.  Up until 6 months ago I also chaired the local city festivals and also the city marketing committee. I also ran a small business from home. I've since pulled back as my lower limbs not liking all the running around. Even sitting for more then hour is too much as of late.

Opaites: No offense to anyone reading. I read and speak with too many just "whacked out" on pain meds. When first diagnosed I joined a few support groups online and molded some relationships. Too many sounding depressed and all doom and gloom. Too many talking about everything they could no longer do because of pain and feeling too tired. I vowed not to become that, but I almost did. We all have different ways of coping with the pain and our tolerance levels are all different. We all make out own choices of how we decide to deal with the pain. For myself - being unproductive was to depressing, the drugs just all make me too tired and queezy.

The sleep thing is a constant battle. Last night, for instance my feet were bad but I chose not to take a vicoden. Bad choice - I was still tossing at 4am and had to be up by 8. It's now almost 4pm and I'm still going. Very common to only get 2-4 hrs a night. Then after a week or so I'll catch up:) Not healthy. I reckon I'll crash hard early tonight..lets hope eh!

Thanks for your time and responses. Very few in my life understand what it is I go through. It is what it is...my mindset!

KB
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