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patwhite101ppatwhite101 Posts: 1,213
edited 06/11/2012 - 8:36 AM in Depression and Coping
My Dear Friends....
As you know i have been having problems since I fell.
The pain is back in my feet and legs worse than ever!!
I am in constant pain in my lower back. Before I fell I only had back pain if I was on my feet to long or doing something where I had to bend over a lot. In other words my back pain was not constant as it is now.
I tore the rotary cuff in my right shoulder. I now have that pain to deal with.
The reason I fell is because my right knee gave way on me and down I went. I injured my knee a few years ago and have been getting injections in it and am due for another injection in a couple of weeks. The knee is very unstable. I have been told I need knee replacement surgery but have been putting it off until I get my leg & foot pain under control and build up my leg muscles. That knee screams at me with every step I take.
My biggest problem is my pain meds. I take one 15mg Oxycodone pill every 4 hours. It barely touches my pain. To add to my problems it is making my legs swell!! Fluid pills do not help. Compression stocking do not help. I sleep with my legs elevated. The ONLY way I can get the swelling down is to stop taking my pain meds for several days!!
I told my Doctor about this new problem and he REFUSES to change my meds. He said he does not know what to give me.
I am stuck with a pain med that does little to help me amd now have this added problem.
I am at my wits end as to what to do. ~X(
My pain Doctor was going to refer me to a Doctor for a pain pump implant but i told hem i did not want my spine messed with again.
The stimulator that I was so excited about and had such high hope for failed to help my pain. I had a great trial but the permanent implant did nothing for me. From what i have read others have the same problem so I do not feel so stupid.
I see my pain Doctor next month and will ask hem to go ahed and refer me for a pain pump. That seems to be the only thing left for me.

OR I could get new Doctors? :?

Sorry for such a loooooong post but thanks to all my dear friends here on SH. You are the best!!
A hug to everyone.... >:D<
Patsy W


  • Patsy, what are we going to do with you??!! :/ I can't believe that your doc is not willing to change your meds, and says he doesn't know what to give you!! There are planty of different pain meds out there, other than, and stronger than oxycodone. I'm sorry, I can't remember if you see a pain mgt doc? Do you have any up there in the mountains? :))( I would definitely say it's time to get a second opinion. Would you be willing to get them to change the programs on your SCS to see if it will help alleviate some of the other pain, so that you're not dealing with all different types at once? I sure hope you find something, quickly, to help you. How do you feel after your PT session the other day?
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • I'm so sorry you're in so much misery. You know I'm feeling for you!
    Maybe that pump will get to the pain better than a pill does. You should go for it, I always say, you never know unless u try. I'm all for trying anything that may give relief.
    You need to get that benedryl,too. I'm just curious if the swelling is a side effect of your meds. And if benedryl works then, hmmmm there's what you've been saying all along, or if it's not the meds, he needs to figure out why you have such swelling or refer you to someone who can really help you.
    Luv ya and big hugs!!!!
  • I'm sorry to hear you're having such a rough time and that the SCS isn't working out for you. Have you been in touch with their rep to see if anything else can be done with it? What a shame to have it in your body and it does not help your pain.

    I don't understand why your doctor won't change up your meds, esp with your legs swelling like they are. What did he contribute this to? It seems to me he's sticking his head in the ground like an idiot ostrich. Why won't he address this problem? I just don't get it.

    As far as the pain pump, what made you finally decide to give it a try? I hope you were able to do some researching about it and there is so much to take in and to consider. It is referred to being a last resort measure. I am waiting to have my surgery in the near future and I can hardly wait. Keep in mind that it's not a magic bullet or a cure all. I was told I'd need to take a short acting oral medication like Percocet. It's hard to say if I'll be able to completely wean off Oxycontin or still need it at a reduced dose. It does take a long while and several dose increases for you to attain a therapeutic pain pump med level. This process also requires a lot of patience and realistic goals.

    Whatever happens I hope you get relief. You deserve better care from your current doctor and he needs to stop ignoring your problems. If this goes on then I would look for another PM. Take care
  • I don't have much to say that others haven't already. You are always giving support and I just wanted you to know you are in my thoughts and I hope things start getting better.
  • Patsy,
    What type of meds are they going to put in the pain pump? If he is on willing to change the meds for you wouldn't the leg swelling only get worse with a pain pump if they don't find the right oral meds? I have to admit I don't know much about the pain pumps at all. Will the pain pump interfere with the scs implant or will it be located some place different.

    What is the degree of the rotator cuff tear? How did it measure on the MRI and is on the top or bottom? I think the only successful way to treat a rotator cuff tear is through surgery, which I had in 08 along with part of the collar bone removed to open the space. I hope they at least put a injection in the shoulder for you to give you some relief? Hope you start to feel better soon. Those falls can just be brutal on us? I like to say it is getting a longer way down to the ground at my age? Maybe I am getting taller not older...not. Anyway hope you feel better soon.
  • Maybe taking the referral to the Cleveland clinic that was offered months ago would be the best route...?
  • Yes I would look for another Dr. to help you. Keep going in and say it's unbearable to live with. I saw my Dr. many times and finally got bearable relief from meds. I hope you get some pain relief soon. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • It is just crazy the way I am bounced around by my Doctors.!! Two different Neurologist's say the only thing that can be done for me is to treat my pain!! Yet I can't get either of my Doctors to do anything!!
    My pain Doc says he well NOT take over anyones pain management that is on anything stronger than Lortab or something like it!! He also said if he had known I was on such strong pain meds he would never had implanted the stimulator but would have recomended a pain pump instead!! He knew what I was on the first time he saw me!! I do not know why he says that!!
    It's just crazy Kelly..crazy!!
    My pain Doc sent me back to my PC Doc for pain treatment but he says he is not qualified to treat chronic pain such as I have!!
    It's so flusterating Kelly. I am at my wits end as to what
    to do.
    It looks like I need to find new Doctors and start all over again!! What if I have to go for a long period without any kind of pain treatment?? I could not take that Kelly....I could not!!
    I have worked with the rep twice for a couple of hours each time and nothing he does help in any way. I turn it on from time to time to see if anything has changed and see if it suddenly starts helping like it did during my trial. I can always hope can't I??
    I did see a very nice Doctor here in town when my PC Doc was out of town and he said he did not like to write scripts for narcotics but he did not mind writing one for someone like me who clearly needed them and had did everything right. I was not a drug seeker, I go to the same Drug store for my meds, I do not get pain meds from different Doctors and I do not get my pain meds filled early. Only problem is....he is not taking any new patients.
    Why can't my Doctor be like hem??
    Sorry to rant on like this but am at my wits end Kelly.
    Sending you a hug my Canadian friend... >:D<
    Patsy W
  • Hi Pat :) I have no advice or opinion to offer ( sorry ) as of my own lack of knowledge. However I want you to know I am reading all this and praying for a good end result soon!
  • LizLiz Posts: 7,832
    I am sorry to hear about you fall, and the pain you are in.
    Wishing you all the best.


    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • :? I can't imagine how frustrating it is for you to be in such pain and have to try to navigate the medical community right now. Do you have a family member or good friend who can help you find another pain management doctor? I know there's the problem of getting to and from appointments and if you have to go very far that may not be an option for you due to the level of pain you're in.

    >:D< >:D< >:D< Wish I lived nearby so I could help you with your problem. Keeping you in my prayers that God will send a miracle your way.

    Take good care,

  • sorry youre hurting again. someone a while back mentioned getting case manager involved. does anyone here have link to how to get case worker?
  • The Doc doesn't know what to give you? That's a big red flag to find another doc. I don't accept the answer that a doctor doesn't know what to do, I find a doctor that DOES know what to do.

    As far as a case manager, talk to your insurance company. They will assign a case manager to help you out. Why? It saves them money by helping you get good and proper treatment.

    Pat, I hope you are able to realize some improvement!! Please keep writing those "long" posts and keep us updated, there's a bunch of people who care for you here!
  • Patsy, I would definitely find a new pain doc. He obviously doesn't review his patient files, and doesn't do his research on his patients. It sounds like you're just another number that he's pushing through. It's too bad you couldn't get on with the other doctor. Maybe you could ask him to take you on, say you'd get down on your knees and beg, if you could?! lol. I wish I had some solutions for you, but I don't, so I'll just remain here and listen and try to be supportive!! I think contacting a case manager might be a good idea, or as someone else mentioned, going to the clinic that was mentioned?
    Hope you have a great Saturday, it's chilly up here this morning, but crisp, I love it!! Can't wait for the leaves to turn!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Thank you for taking the time to leave a comment dear.
    That really means a lot to me.
    I am in a lot of pain right now . I am trying to go without my pain meds to get the swelling out of my legs but am going to give in and take one. This is just to hard!! I know you understand.
    Sending a hug >:D<
  • I do not know what meds they put in pain pumps and that is a worry of mine also. What if they cause my legs to swell too?
    My Mother had cancer and was on Morphine and her legs would swell up so huge the skin would split and fluids would run out of them and thats how bad mine get!

    I expected my Doctor to order a CT scan or at least an xray of my shoulder but all he did was ask me to raise my arms and then moved my arm around and then said I tore the rotary cuff!! He ordered PT for me. But how can he actually know what is wrong??
    I can raise my arm but can't put my arm behind my back or put my hand on my hip. I can't lift anything or reach for anything with my righ arm.
    I don't know any more after seeing the Doctor than I knew when I went. I just know I hurt it and am in a lot of pain.

    One thing I do know for sure.....I need a new Doctor!!
    Thanks for the comment dear. Hope you have a great weekend.
    Patsy W
  • You're getting lots of good advice. I know it is easy to say "get a new doctor" and much harder to actually do it. I'm sure there is someone out there with the skills to help you. Unfortunately sometimes it takes awhile and a lot of searching to find that person.

    I just wanted to let you know I am thinking about you and am so sorry you are having more than your share of problems.

    Hang in there. Have faith that you will find a solution.

    xx Gwennie
  • I agree with you on my Doctors. I need new ones but what Doctor is going to take on a chronic pain patient?? Here in West Virginia thy run for the hills when they hear the word "pain"!!
    I decided to go for the pain pump because my pain is so poorly managed. It is almost the same as nothing.
    I am afraid if I keep pushing my Doctor for more help he will refuse to keep giving me refills for what I am now taking.
    I take one 15mg Oxycodone pill every 4 hours and it does ease the pain a bit but I really need something stronger. All I want is to get the pain down to a level I can live with.
    My PC Doctor REFUSES to do anything more for me!! My pain Doc REFUSES to take over my pain management!!
    It is just plain crazy the way I am being treated. It's like I am a red hot poker no one wants to touch.
    Today I am trying to go without any pain meds but the pain is just to bad to go much longer and it has not been 24 hours yet!! It's the only way I can get the swelling out of my legs. It is really bad now.
    Sending a hug.... >:D<
    Patsy W
  • I agree with you 100%. The thing that prevents me from going to Cleveland is the expense of staying the length of time needed to be treated. I just can't afford to spend time in a hotel. My sister offered to take me and pay the expenses but I just can't let her do that. Both she and her husband work and she can't really afford to pay my way. No...I can't allow her to do that.
    Thanks dear for the comment...
    Patsy W
  • Thank you everyone for your comments and support.
    Right now I am trying to go without pain meds to get the swelling out of my legs. Right now is not a good time to do this because of the spike in my pain but it's the ONLY way i can get the swelling down. Plus I have the added shoulder pain to deal with.
    I do not know how much longer I can hold out. I am afraid I will go nuts and grab the bottle of pain meds and swollow them all in one gulp. LOL
    But no....I would never do that no matter how bad the pain gets.
    I am very careful with my pain meds. I can take 6 in a 24 hour period and every day I count out 6 and set them on my table in a seperate bottle then I write down the time I can take one and each time i take one i cross that time off. That way I make no mistakes and forget when I took a pill. If I should forget to cross out the time I took one then all I have to do is count the pills left in the bottle.

    Now I am going to try and force my swollen feet into my shoes and take my little dog for her walk. No matter what I am going through I have to take care of my baby. She is always right at my feet. She likes to stay as close to me as she can get.....luv her heart. I would be lost without her.
    She never sleeps with me but she likes to sleep facing my bedroom door. That way she is ready to go if she hears a noise.
    Thanks again everyone. You are just wonderful people.
    Sending a hug to everyone..... >:D<
    Patsy W
  • Pat - As has been suggested, get another Dr. Living with pain and gritting your teeth through it, does not reduce pain, It makes pain ruts in the nervous system. These pain paths get so that anything that happens, gets a free ride on the "RUT". It you believe the gate theory of pain control, your body needs to have the pain controlled to a point where you are not preoccupied by it.

    For many years. I just gritted my teeth and plowed along. Many thought I was an angry person, when I began to explain that I was in pain, and how much pain, it became obvious that I needed pain control.

    If the meds that you have are not working, ot give you severe side effects, you may need to replace the dr and the meds.

    I do hope this subsides for you!
  • I just went to have mt SCS adjusted and the rep goofed up all my programs. Now, my device is not only not helping my pain but I am finding the sensation to be kind of irritating. Thankfully, the programs I do like are on file and I will have those replaced next week. I keep going back to the relief you felt on your trial and keep thinking that it is too early for you to give up on the SCS. Have you talked to the company rep to see if they have a record of the program they used during the trial? Have you had this program installed on your permanent implant? I know your last meeting with the manufacturer's rep was miserable, but I sincerely believe in my heart of hearts that this is a programming issue and the right programmer could get you back to that happy place where you were during the trial. Or are you just sick of hearing this and want me to shut up? Susan.
  • Pat I was talking to a lady today who told me that her med ( not sure what it was )caused edema/swelling big time in her feet and ankles.

    She drank hot lemon tea and swears by it. She just took any kind if hot tea and added real lemon juice to it.
    I love lemons so I am going to try it ( I too am having a rough time with edema right now due to the Fent patch ).

    If you like lemons maybe give it a try :)

  • Thank you for your comment. I agree 100%. I need new Doctors and new meds!! What kind of a Doctor ignores an obvious problem like this??
    All he did was shrug his shoulders and say....well just don't take your pain meds!! He said he did not know what to give me!! To tell a person suffering with savage chronic pain not to take their pain meds is the same as saying to pick up a gun and blow their brains out!!
    Sending a hug coz I am a hugger...... >:D<
    Patsy W
  • Thank you Susan.....and no I never want you to just shut up. That put a smile on my face so thank you for that.
    I still have the same program that helped me during my trial. I ask the rep to leave that same program in but he did change others.

    I still try it from time to time but because I can't get my right arm behind my back I have only tried it once since I fell. The right shoulder is the one I hurt when I fell.

    I do hope you get your programs back and soon. I understand how the tingling can get on your nerves when it is not helping.
    Sending a hug... >:D<
    Patsy W
  • they can put Diaudid I know for sure in a pain pump, and yes a person can both have a SCS and a pain pump.

  • First things first, I'd get your PCP to refer you to an ortho to see about your rotator cuff...that could be serious.

    Next, since you are having issues finding a good PM doc, have you tried a sympathetic anesthesiologist? I "know" a few folks through other boards that have had success with getting one to take their pain mgmt on.

    But since I am a newbie and don't know your history, maybe you have tried that route?

    Also, if you are friendly with your pharmacist, I would ask them about the swelling. If they agree that it might be medication related, maybe they would have a decent doctor suggestion for you. They KNOW what doc's prescribe what, although I certainly wouldn't ask in a way that would make them suspect you of seeking behavior. Just ask if they are aware of any PM docs that other patients have had success with...and one that wont shrug off serious side effects!
  • I was posting a reply to everyone and do not know where it went. Off to that lost and found replies place in the sky I guess??
    I went without pain meds yesterday and swelling in my legs is almost gone. Yippeeeeeeeeeeee
    Boy that is a rough way to do it too!! I kept my legs elevated most of the day and all night!!
    About 2AM this morning I caved in and took a pain pill so I could go back to sleep.
    I had been sleeping and a nightmare woke me up!! I was kicking and moaning....I thought someone had a vice grip on both my ankles and was holding me down!! It was the pain in my feet and legs making me have the awful dream. LOL
    Thanks to everyone for your comments. You are the greatest!!
    Sending a hug to everyone... >:D<
    Patsy W
  • Try soaking in a warm bath with epsom salt. The salt will draw out the fluid and the swelling will go down. I hate to see you suffering. Not taking your pain meds is a rough way to go. I hope you feel better soon! I also think it is a good idea to try the pain patch and if the doctor won't give it to you then I say go ahead and get the pump! I am praying for you.

  • I awoke this morning and my legs are back to their normal size and not only that ...my pain is back to "normal"!!! Yippeeeeeeeeeeeee It's a wonderful day!!!
    Not onlt that...it's raining and I just had to go out and sing and dance in the rain.....if you can call my hobbling dancing. And well my singing is kinda bad too BUT I scared all the stray cats away!!
    Everyone around here is sure I am nuts but when you pull through a pain spike it calls for celebrating!!
    Yippeeeee...woweeeeee....whoopie.... <:P =D> :D
    I am back to my painfull "normal" self again!!
    Thanks to everyone for helping me through this he#%!!
    A big hug >:D< to everyone
    Patsy W
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