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
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