My toes,fingers and legs are killing me!

Lisa1972 Community Member March 21, 2009
  •  Today has been one of the most painful days I've ever had.It's so hard to explain especially to those who cry when they stub their toe on the coffee table.My toes hurt so bad that it drives me to tears.Same thing with my fingers.Then my family is ready to lock me in the looney bin.My legs are hurting and the slightest touch feels like a bruise.This is my 2nd night unable to sleep,I'm exhausted and that just magnifies the pain.I've taken Lyrica,Oxycontin,Oxycodone,Dulaudid and Fentnyl pops.I rubbed my legs,feet and hands down with Voltaren gel.I know that a trip to the ER is useless since I have all the big guns at home.I'm at my wits end.

7 Comments
  • Anonymous
    Anonymous
    May. 08, 2009

    Lisa I'am so sorry you are going thru all of this pain I can def relate to you!I'am 28 years old and at the age of 26 I had my first surgery on my spinal cord. I had such horrible leg/foot pain when I woke up one day I couldn't even put my foot on the floor or even walk.I was rushed to the hosp to find I had an arachnoid cyst webbed around my cord.But this...

    RHMLucky777

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    Lisa I'am so sorry you are going thru all of this pain I can def relate to you!I'am 28 years old and at the age of 26 I had my first surgery on my spinal cord. I had such horrible leg/foot pain when I woke up one day I couldn't even put my foot on the floor or even walk.I was rushed to the hosp to find I had an arachnoid cyst webbed around my cord.But this was actually found 4 days after I went to the hosp so in the mean time I was on so much pain medication to keep me relaxed and tested for rhuemetoid arthritis plus seen by a neurologist.It was like they didn't believe I was in so much pain b/c the first 2 MRI's they did were of my lower back and there was nothng there.Then the tech went up a little higher on the next one and found it.They had to remove 2 bones to get to the cord.The surgery was a C5-C6 Thoracic Lamenctomy.My surgeon said that if it was a disc thing they never would have operated on that area. I never went back to work b/c I was in so much pain still after the surgery so I was on disability.Then I went for my 6month MRI and it was all accumulating again about 3in higher from the inital cut the first time.At this time I was 27 and going in for my second surgery.They needed to remove 3more bones to get to the cord this time my incision is about 8 1/2in long and I'am very self concious about it.This was all done in an 8month period.I'am now 28 yrs old and am on Lyrica,Avinza(morphine),percocet for the break thru pain and drs recently put me on prednisone for the inflamation in my neck.I'am in pain all the time and feel as though some people don't believe or understand it.I can't drive still at this point or do any of the activities that I used to enjoy and probably never will.I'am sorry to babble on and on just wanted to let you know that I feel your pain and hope that you get the help that you deserve and the support as well.Sincerely Sarah 

    • DaveE9th
      Jun. 17, 2012

      I have fused C5-C6-C7 bones in my neck. I have constant toothache-like pain in bony area of back of neck. Pain radiates into facial area. Chronic stiffness in neck. These were original symtoms, which I still have 100%. Also, now I have peripheral neuroapthy in arms/legs due to failed ACDF surgeries in 2009-2010 (burning, tingling, radiating pain into fingers...

      RHMLucky777

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      I have fused C5-C6-C7 bones in my neck. I have constant toothache-like pain in bony area of back of neck. Pain radiates into facial area. Chronic stiffness in neck. These were original symtoms, which I still have 100%. Also, now I have peripheral neuroapthy in arms/legs due to failed ACDF surgeries in 2009-2010 (burning, tingling, radiating pain into fingers and toes, arms feel swollen like air bags all the time). I have spasms of burning, cold sweats, pain from head-to-tow, and fatigue on almost a daily basis. Neck pain is chronic 24/7 and has ruined my life. Family doesn't understand. I have no social life. Overall condition makes me irritable, frustrated, mood swings, depression, tired. I live alone.

       

      I take 120-160 mg of Oxycontin daily and 150-300 mg of Lyrica. The drugs cause water retention and my feet/ankles swell-up if I take the higher dosage. I gain 8-12 pounds of weight just from water retention. My body feels bloated. When this happens I take the lower dosage and my body returns to normal weight in a few days. I take more meds because the neck pain is horrible and the aggravating burning/tingling in my arms/hands. My body won't let me take higher amounts. So I'm continually adjusting my meds. 

       

      Beware of taking Oxycontin at the same time as Lyrica, because they cause double side-effects. I was issued a full-sized sheet of paper, a WARNING from the pharmacy about taking these two drugs together. These drugs combined cause horrible arthritis-like pain in my fingers; and my entire mouth, tongue and throat dry out (dry mouth) much when I take a nap or sleep at night. It's a terrible feeling when I wake up. I drink plenty of water, but it doesn't stop the dehydration.

       

      What I do now is only take Oxycontin before and during the night; not Lyrica. It helps reduce the dryness and finger pain. I take about 150 mg. of Lyrica during the day. Even with the Lyrica, it only reduces my peripheral neuropathy symtoms by about 50% (but it's definitely better than nothing). A shower and water recreation (sauna, hottub, pool) is very helpful to alleviate suferring for the moment.

       

      The back of my neck feels like it's being ripped out because of the continual chronic tension. It makes it difficult to conversate with people, feeling like my neck is about to explode. An EEG showed that my muscles are not causing the tension; it's from damage to my spinal cord. My hopes of ACDF surgery removing the protruding disks at C5-C6-C7 didn't pan out. It was a problem, but not the problem. I still have a bone spur at C5-C6, stenosis, a slight disk protrusion at C4-C5, et cetera.

       

      Since my 2nd surgery made me 100% worse, I have been discouraged by a surgeon, neurologist and my doctor from seeking further surgery to alleviate my afflicitons, lest I end up paralyzed and worse. There is a diminishing return on surgical procedures I've been told. I will suffer the rest of my life and there's no one that can help me. I am functional, but afflicted; thankful to God for my blessings, yet depressed from the pain, loneliness and coping with my ailments. "One day at a time" as they say.

       

      The bottom line is that I can't take Lyrica and Oxycontin together. I switched to Lyrica because I was having the same problem with Gabapentin. There's just something about the nerve drugs that conflict with the Oxycontin and cause my fingers to hurt badly and also severe dry mouth when I sleep. I've had x-rays of my hands and blood tests, which haven't shown any other cause of the horrible pain in my fingers. My hands burn, and hurt with arthritis-like pain. It's in the fingers and not the fist or hand. I have a dozen afflictions going on in my body (all it once) and it's overwhelming on a regular basis.

       

      So if you're having dry mouth and finger pain, and you're taking Lyrica (or Gabapentin) with Oxycontin together, try not taking the Lyrica or Neurontin (Gabapentin) when you sleep. If you're like me, you can't cut back on pain meds because the pain is so bad without it. My pain is bearable with the meds, but drives me to tears and despair without it.

       

      I hope this information may be helpful to others. If nothing else, please know that you are not alone in your afflictions. I know pain and affliction; not your specific pain and suferring, but my own. Bodily pain that doesn't go away changes one's life forever. It makes us view life entirely different, realizing that most people take good health for granted until they've lost it.

       

      My suferrings have caused me to think about spiritual things a lot more, which is a good thing. The hope of a new body and a better life in eternity certainly appeals to one who is afflicted and suferring daily in this life. Who can argue with that? My faith in the Gospel of Jesus Christ (death, burial and resurrection) sustains me through my afflicitons. I'm not preaching to anybody, but this hope has carried me through all of my pain and miseries. It's a personal choice that we all need to make. God bless.

  • chippi
    Apr. 14, 2009

    Hi Lisa, I'm sorry to hear your in such pain. I can relate to this. From 1995-97 I hurt all over, especially my feet and hands. Other areas hurt also, to the point that clothes hurt on me. The slightest touch anywhere would cause such pain. Numerous docs had no idea what the cause was, numerous tests for numerous conditions showed up nothing. You begin to feel...

    RHMLucky777

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    Hi Lisa, I'm sorry to hear your in such pain. I can relate to this. From 1995-97 I hurt all over, especially my feet and hands. Other areas hurt also, to the point that clothes hurt on me. The slightest touch anywhere would cause such pain. Numerous docs had no idea what the cause was, numerous tests for numerous conditions showed up nothing. You begin to feel that docs think it's all in your head, you know it's not, very frustrating. Anyway, finally after two years of searching for cause, went to rhuemetologist out of area, who knew within 15 min. what the problem was, fibromyalgia. Finally, a diagnosis. I'm not suggesting this is the cause of your pain, only that I know how frustrating it can be. Just don't give up searching. Try new doc, second,third opinion if necessary. now, 12 years later, I've learned how to manage the fibro and rarely get to the point I was at 12 years ago. When the body is hurting, there IS a reason, just hang in there and keep searching. Good luck

    • Lisa1972
      Apr. 14, 2009

      Chippi,I know what you mean about people thinking we are just nuts.It hurts for clothes and blankets to touch me when I'm having one of my "spells",as my Mom says lol.I was dx with fibromyalgia a couple of years ago and it was horrible but this is worse.It started after chemo and I take Tamoxifen so I'm assuming it's cancer related.I just wish somebody could...

      RHMLucky777

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      Chippi,I know what you mean about people thinking we are just nuts.It hurts for clothes and blankets to touch me when I'm having one of my "spells",as my Mom says lol.I was dx with fibromyalgia a couple of years ago and it was horrible but this is worse.It started after chemo and I take Tamoxifen so I'm assuming it's cancer related.I just wish somebody could fix it.

  • Violetlady
    Mar. 22, 2009

    Dear Lisa,  It sounds awfully bad the way you described it.  I have nueropathy in my feet.  This past week pain kiced up in my feet and legs.  Today my feet and legs hurt so bad .  I started to think this afternoon that there might be clots or something in my legs.  Well, all of that to say, I am sorry you are hurting...

    RHMLucky777

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    Dear Lisa,  It sounds awfully bad the way you described it.  I have nueropathy in my feet.  This past week pain kiced up in my feet and legs.  Today my feet and legs hurt so bad .  I started to think this afternoon that there might be clots or something in my legs.  Well, all of that to say, I am sorry you are hurting so bad and that I would pray for you

    Violetlady

    • Lisa1972
      Apr. 14, 2009

      I really do appreciate your prayers.I will keep you in my prayers as well.It's so nice that we have such a wonderful place to support one another.I'm really starting to think that I have Rheumatoid arthritis.I have an appointment with my pain management Dr tommorrow and I am going to ask her to send me for testing.

    • melvin.toon
      Sep. 25, 2014

      try eating lots of brockley pommagranite and use turmeric on salads.eat this regular and see if  it helps .works for me .god bless lisa .  melvin