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New Member

Date Joined Jun 2012
Total Posts : 4
   Posted 6/24/2012 4:37 AM (GMT -6)   
I started having heaviness in the legs and the little toe on right foot turned blue and was gangrenous.  I was told by my first doctor, a podiatrist, that I had a vascular problem. I went to my GP and he disagreed.  He noted that I had just broken the bone under that left toe (the blue toe) a few months before (it had healed well by then) and thought I had RSD.  He sent me to several doctors, a rheumatologist, a vascular doctor, etc. The initial vascular screening did not show anything, but I was told by the podiatrist that I had a vascular problem because the toe looked ischemic and my legs felt very heavy (both legs).  I started to have terrible leg pain. It never stopped. It was constant, aching like the flu.  It nearly drove me crazy. I took vicodin with little success.  Finally found a young doctor (too young) who found I had a 98% blockage of the abdomina aorta which was causing the heaviness and leg pain.  He gave me plavix and the ischemic toe (which burned 24/7) finally resolved.  But, my legs hurt constantly. I was scheduled for surgery using a cook zenith stent.  It did was not scheduled until October.  I started seeing doctors early in the year.  Now, I have suffered chronic pain in my legs that is so bad, I am on meds 24/7. I hate being on medication.  My Pain Mgt. Doc wants to do pain stim, but I am so frightened. I have read some awful things. I tried the fentanyl patches, but I do not like them as I get sleepy  especially when it is hot.  I sweat easily and I feel they trigger an early release of the medication. I am scared of them, but they do work, but to what end. I want to work. I am self employed and have some wiggle room, but to be successful, you have to be there when your clients want you to.  I am at a loss. I have been tested and the stents are working just fine. One vascular surgeon told me the condition was diagnosed too late and I have nerve damage from a lack of onxygenated blood and nutrients reaching my lower extremities for too, too long.  All the doctors at the clinic where I was treated say it is coming from my lower back.  My back did not hurt during those early days.  It does now because I am out of shape and my back is not strong like it used to be.  I don't know what to do about the pain stim. I had a client who got an infection from it and almost died. I have read these forums that also don't seem to give me much hope.  I am so tired of being on pain meds, but I want so much to live and love those around me.  I suffer all the time. What can I do?  I need some advice and hope. I feel my mind is so full of interest in life...but my poor body will not cooperate.  What a dilema.  Anyone have any advice?

Forum Moderator

Date Joined Feb 2003
Total Posts : 16758
   Posted 6/24/2012 2:58 PM (GMT -6)   
Hi Marahope and welcome to the chronic pain forum. I can relate to some of this leg pain you talk about, although my situation is not as severe as yours. Your one dr that said it is permanent nerve damage really makes a lot of sense, especially as long as you went without any real help for the condition.

I agree with your thought on having the SCS unit implanted and yes there are a lot of people that have come through here with one that wished they had not done the surgery. I have seen people get some relief for a couple of years then have it stop helping. I just personally feel like those things need more work and more studies done. The units do not stop your pain they create a new sensation that is suppose to override the pain and people still need break through meds. Your PM dr should honor your decision about the SCS unit. I would not let a dr bully me into something I do not want.

The problem you had with Fentanyl happens a lot especially in the summer when its hot and then they release too much medication. You have to avoid getting hot and have your body temp increase or else it releases too much medication.

Has any of your drs ever mention a pain pump? I have one. They are for people that have ran through all the orals meds and there is nothing left that works. I had nothing let to try and the pump was my last resort and I do not regret it. It seems like everything has a price of some sort. Like you say none of us ever wanted to be on meds.

Anyway I wanted to pop on and tell you hello an welcome aboard...Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Veteran Member

Date Joined Apr 2010
Total Posts : 2265
   Posted 6/24/2012 5:22 PM (GMT -6)   
Hi marahope I wanted to welcome you to our chronic pain forum. We have a lot of caring and supportive members here. I'm sure you will get the support you're looking for.

I'm sorry that the doctors didn't get your condition diagnosed quickly enough and you're in so much pain. I hope you can find a way to reduce your pain really soon.

We all can empathize with you, as we all have chronic pain.

Take care.

Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Veteran Member

Date Joined Oct 2008
Total Posts : 2024
   Posted 6/24/2012 6:06 PM (GMT -6)   
Hi Josa, i wanted to welcome you to our chronic pain forum. I am glad you found us but sorry you are having so much pain. You will find the members here very caring, supportive, non judgemental and full of knowledge. I hope you will keep posting with us and let us know how you are doing?
Have you gotten another opinion on your condition? what doctors have you seen so far and what other meds have you tried?

Hope you get some answers soon.


New Member

Date Joined Jun 2012
Total Posts : 4
   Posted 6/30/2012 4:00 AM (GMT -6)   
Thanks all. I don't know what a pain pump is. How does it work? Do they put a lead(s) in your spinal cord? Can someone tell me what it is? That is the only thing I do not know about. I don't know anyone who has had one. I have heard about them for cancer patients only. I am not sure about the mechanism. Have not done any online search on it. Forgot about it actually as I think that is an old remedy, but I remember hearing about them. Thanks,


Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 6/30/2012 10:16 AM (GMT -6)   

Susie is the authority on pain pumps :) - as she has one.... but I have had the pain pump trial. I'll give you a little info and then let others fill in the blanks (or correct me if I say something incorrectly, lol).

The pain pump is a cathetar that is put through the intrathecal space of your spine... to deliver medication through the pump portion that is implanted in your abdominal area. Most of the time - morphine is used in the pump; but dilaudid and fentanyl can be used... as well as other medications (muscle relaxer, etc).

You first have a trial to see if the pump helps w/ your pain... if it does, then you have a permanent implant.

Anyway, you may want to google "intrathecal pain pump" and read some more about it. You can also put "pain pumps" in the search function here on the board.

Take care... --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

New Member

Date Joined Jun 2012
Total Posts : 4
   Posted 6/30/2012 12:17 PM (GMT -6)   
Thanks friend, but the catheter part is what worries me. I did my online research. My biggest question is whether the "catheter" can be safely removed even after a trial. I may be overly concerned, but I would not want any scar tissue forming in and around my spinal column if that catheter dislodged. That is what concerned me about the pain stim. Those leads are placed in the muscular tissue. If they break, you cannot retrieve them. You just have to, as with leads placed in the heart for a defib device etc, leave them there and place additional leads. They stay put because of the formation of scar tissue in the area. There are risks associated with trying to remove leads that have dislodged from the main element. So, if it does not work or becomes dislodged, can the catheter be safely removed? Please weigh in someone. I get more information from listening to real people. My doctor would not allow me to talk to anyone who had a pain stim, so I am relying on your forum to educate me. I know you are wondering why now? I just have not done anything like this before because, I have been ashamed that I could not fix this. In the past whenever I had any surgeries or any other incident where I used pain meds for a prolonged period (more than 3 weeks at the most), I always felt like I bounced back...quick. I was a steamroller. I could go in for a surgery (two rotator cuff surgeries, one calcium deposit removal, a bunionectemy with hammer toe correction, and yes, I had a face lift) and be back in my office in five days tops. Not one time did I ever suffer for long. I never needed pain meds for very long at all. Why can't I fix this? Why did my body not repair itself? I struggle with that a lot and just don't get it. I always believed that Chronic Pain was only for those with cancer or some other debilitating neurological or autoimmune disease...truly. I know it sounds trite and naive but I did. I still do not understand the concept of chronic pain. I just do not "get it". No one has ever explained it to my complete understanding. I want an answer to the why. Then I can maybe work on the how. That is the type of thinker I am. I pray, my mother prays (rosary on a daily basis asking the Blessed Mother to heal me) and still...I suffer. Can someone tell me the why of Chronic Pain with say, nerve damage? I thought the nerves could regenerate in any otherwise healthy person. Thanks so much,
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