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  • All over pain. Just keeps getting worse

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    Old 06-18-2009, 01:05 PM   #1
    hessie28
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    All over pain. Just keeps getting worse

    Hi. Most people may remember me but I will give a quick reminder. I had double lumbar fusion L3 & L4, S1 with Laminectomy and Disectomy in Sept 2006. I was doing pretty good for three or four months after the surgery. Then the pain got worse and never got any better. The pain has just been getting worse and worse.

    Fast Forward to 2009. Months ago I started getting pain in my right hip. I've had pain and electric shocks down my right thigh and calf. My foot has beem tingly and painful. I had an MRI which showed a bulging disc above the fusion. Then a narrowing of the facet something or other. (the little hole of the vertabrae is closing) that is how they explained it. I also have severe stenosis and mild arthritis.

    Now three weeks ago both my knees started to hurt. I was at a wedding and guess I did alot of standing. Did not feel it until a few days later. Now I can barely walk. Both knees were swollen and hurt. Now just the right knee hurts and is locking. I know the last time my other knee was like that it was the cartilige and I had surgery. I was hoping it got better. Today it is really swollen and painful.

    I am so sick of going to the Dr. Everytime I go in they look at you like "what now". They are all good. But I think they blame everything on existing problems. They don't look further.

    Currently I am on the Fentanyl Patch and Percocet in between. The pain never goes away. I am never pain free. I take the meds as prescribed. But the pain never goes away.

    I am doing Aqua Therapy. In the pool I feel good. When you get out the pain is back. Today my hip was killing me in the water.

    So, what to you do?

     
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    Old 06-18-2009, 02:38 PM   #2
    brianpain33
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    Re: All over pain. Just keeps getting worse

    Why are you not on any nerve pain medications. The pain in your hip and leg is from nerve pain. I don't remember if you have been on any of these but I will give you the list:

    Anti-seizure meds: Neurontin, Lyrica, Tegretol, Trileptal, Topomax

    Atypical opiod: Ultram(tramadol), Ultracet

    Anti-depressants: Cymbalta, Effexor

    Benzodiazepine: Klonopin(clonazepam)

    brian

     
    Old 06-19-2009, 10:02 AM   #3
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    Re: All over pain. Just keeps getting worse

    My PM does NOT beleive in Benzos at all. We have to sign a statement if we ever show positive that we would wean off them as they don't help pain etc. I have issues with my knees swelling after I am been on my feet a lot as well as other arthritis areas. My Doctor gives me Flector patches that I do 12 hr on 12 off as well as a gel (Volteran) that works WONDERS

     
    Old 06-19-2009, 02:54 PM   #4
    sunshine grl
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    Re: All over pain. Just keeps getting worse

    Why not take something alternative like me? I have been diagnosed with Lupus a few years back and had terrible arthritis pain. I was on steroids for a while, hated the side effects of it and now I am taking already 4 years well balanced nutrition and I am pain free. It took about 4 month that my body recovered.

     
    Old 06-19-2009, 09:06 PM   #5
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    Re: All over pain. Just keeps getting worse

    Quote:
    Originally Posted by brianpain33 View Post
    Why are you not on any nerve pain medications. The pain in your hip and leg is from nerve pain. I don't remember if you have been on any of these but I will give you the list:

    Anti-seizure meds: Neurontin, Lyrica, Tegretol, Trileptal, Topomax

    Atypical opiod: Ultram(tramadol), Ultracet

    Anti-depressants: Cymbalta, Effexor

    Benzodiazepine: Klonopin(clonazepam)

    brian
    Brian, I've already tired Neurontin, Ultram/Tramadol, Lyrica and Topamax. When the Dr. doubled the Topamax it helped a tiny bit. Nothing exciting. It started to interact with the meds I take for my bladder. (Ditropan XL). I found that out after I had a very severe bladder issue. The Topamaz interacts with all bladder meds. Unfortunately I need those meds more then the nerve meds. Sad but true. That is why the Dr. wants me to try the epidural shots again.

     
    Old 06-19-2009, 09:09 PM   #6
    hessie28
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    Re: All over pain. Just keeps getting worse

    Quote:
    Originally Posted by Sonnenschein09 View Post
    Why not take something alternative like me? I have been diagnosed with Lupus a few years back and had terrible arthritis pain. I was on steroids for a while, hated the side effects of it and now I am taking already 4 years well balanced nutrition and I am pain free. It took about 4 month that my body recovered.
    I think that I have so much damage inside that really nothing else would help. Of course my nutrition could be better. The majority of my pain is muscle. The rest is nerve pain. I also have 3 herniated discs in my neck which I did not mention Thanks for the advice. Appreciated..

     
    Old 06-19-2009, 09:48 PM   #7
    hessie28
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    Re: All over pain. Just keeps getting worse

    Quote:
    Originally Posted by katlovesdogs View Post
    My PM does NOT beleive in Benzos at all. We have to sign a statement if we ever show positive that we would wean off them as they don't help pain etc. I have issues with my knees swelling after I am been on my feet a lot as well as other arthritis areas. My Doctor gives me Flector patches that I do 12 hr on 12 off as well as a gel (Volteran) that works WONDERS
    I'm not familiar with Benzos. I probably know them by another name. I think Brian mentioned in his post. What type of drug are they? I assume for pain since you mentioned a signing a statement. I have a few boxes of Lidoderm patches. Not sure if the same as Flector Patches. I'm afraid to use them until I ask the Dr. Not sure if they would interact.

    I really feel like something is going on inside my body that is causing a bunch of odd symptons. Every single joint hurts. I woke up this morning and the bottom of my nailbed on my thumb was throbbing. Seems like anything that bends is very painful. Also have very bad bladder problems. I have a bladder disease but the bladder could be aggravated by the Tarlov Cyst at my tailbone. I did not mention but both my breast are extremely painful. They are cystic so can't feel if any lumps or anything. Plus I have the swollen knees. I rarely retain water. The only reason I have the water pills is I needed them when I was on the Neurontin and Lyrica. I retained alot of water with those meds. I just feel like something is going on causing all the swelling and pain. Problem is that every sympton except the breast are related to other documented conditions. So I feel like the Doctors don't bother looking further. I have an appt. with my primary Dr. who is excellent. She is a few years older then me, compassionate, kind, and knowledgable. Can't get in until next Thurs. If history repeats itself, the odd symptons will be gone by then and they will think I am nuts. Actually, my primary Dr. would not think that. I think I need blood work to see if everything normal.

    Thanks for your response. It is very appreciated.

     
    Old 06-26-2009, 01:47 PM   #8
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    Re: All over pain. Just keeps getting worse

    Dear Hessey,
    Nice to hear from you again. Unfortunately you don't have good news for us...
    Well, I understand what you are talking about when you talking about leaving in severe pain. Somebody here mentioned about balanced diet and pain free life as a result...
    I am on balanced and very healthy diet for all my life; I used to exercise for every part of my body cardio and weights for more than 30 years of my life. And yet I leave in such severe pain and nothing helps my pains which come from Lupus as well, RA and damaged nerves from spinal surgery syndrome and my Arachnoiditis. I wish they would have something for us, sufferers.

    There are pain, and there are PAIN. I don't want to hurt anybody by any means; my heart goes out to anybody who is in pain, believe me.
    I have a friend who complains about pain constantly, meanwhile I asked her what is she taking for it she says 1 pill of Tylenol x 2 times a day. I asked her if this helps her, she answered - unbelievable, pain just disappears. This is why I say pain and PAIN.

    The therapy you are going to is excellent; this helps your muscles to stay strong and brings blood circulation to inflamed area. Keep up with it, girl!

    Best wishes to you.

     
    Old 06-26-2009, 08:23 PM   #9
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    Re: All over pain. Just keeps getting worse

    Thanks Moldova. I am with you. I love when people say they are in pain. I think to myself, you don't know what pain is. I went for another epidural shot Wednesday. Luckily it did not hurt like the last one. I told the Dr. whatever he did it hurts really bad still in my tailbone. This shot was right at the bottom of the scar. Helped the tailbone pain he caused but the rest is still there. He said that shot would only help the leg pain. We shall see.

    I went to my primary Thursday. She said something nice. She said I am always smiling and in good spirts. I said what choice do I have. Either that or crawl up and die. She said she gives me credit because many people do just crawl up and give up on living. I always say that my 15 year old son is the reason. I try to keep things normal for him. Life goes on.

    On another subject, last night I took antibiotics for my bladder infection. I've taken them many times. I got a really bad allergic reaction. I got a hot, red rash, joint pain and swelling all over. Then I was shaking and really cold. I was going to have my husband take me to the emergency room. Then I thought about taking an antihistimine and it helped a tiny bit. So I called the Dr. He said to take another antihistimine. So I woke up okay. Still a little swollen. I've take it with all the meds I take everyday. Pretty scary.

    I always wonder about the pain meds. Are they to get rid of the pain all together or just to get by. Mine only help me get by.

    Hope you are feeling better.

     
    Old 06-27-2009, 04:56 PM   #10
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    Re: All over pain. Just keeps getting worse

    Hey Hessie...
    Sorry things are not going well for you. Yes, I do understand PAIN...yup...really do...most of us here do. Just let those others live a day or so in our lives...then they would know... It is awful that we are judged by others standards..about our illnesses and causes of pain...we are individuals...and others can't possible know what we are putting up with....this is not a one pill fits all type of situation....we have to keep trying different meds...to see if one will work. I do hope that your primary Dr. will be a big help to you...and get you in a more comfortable place... I am thinking of you...take care.

    Leslie (Sage)

     
    Old 06-29-2009, 01:17 PM   #11
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    Re: All over pain. Just keeps getting worse

    Quote:
    Originally Posted by hessie28 View Post
    I'm not familiar with Benzos. I probably know them by another name. I think Brian mentioned in his post. What type of drug are they? I assume for pain since you mentioned a signing a statement. Thanks for your response. It is very appreciated.
    Benzo's are short for benzodiazepine and they are anti-anxiety medications although they can be useful for some types of muscle/nerve pain. There are quite a few of them out there but you might have heard of Xanax, Klonopin, Ativan, Valium, etc. They can be abused just like pain meds can and people can become addicted to them by taking more than prescribed just like pain meds. However, if you take them as prescribed, then you become merely dependent on them. There can be issues with mixing the benzo's and pain meds because both lower breathing and you can even get to the point where you stop breathing and die but this usually happens to people that are abusing those and pain meds together <removed>

    brian

    Last edited by mod-anon; 06-30-2009 at 09:53 PM. Reason: do not speculate about other people's situations

     
    Old 06-29-2009, 01:24 PM   #12
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    Re: All over pain. Just keeps getting worse

    Hessie, Leslie,
    I agree with you both... I got a link to another board and out of curiosity went to see what is this about. After introducing myself and telling my story not only about Arachnoidities, Failed B/Surgeries, MS, RA and Lupus and all the pain I have to leave with 24/7 I recieved a post from one person who claims that she is in so much pain due to her OA and after she started to take vitamins and fish oil capsules she is completely pain free....
    I am on healthy diet, I take vitamins, fish oil capsules, flax seed oil and God only knows what kind healthy foods I am taking every day I don't have any relieve... She replies that maybe I don't take them right that is WHY I still have pain... I lost my case, guys! Wouldn't you?
    That is why I mentioned in a previous post about pain and PAIN.
    Anyway, I don't know about others, but my PK just take an edge, nothing more than that. No, it doesn't take my pain away.
    If without meds my pain all over my body is about 9-10, with meds I am about 6-7 on a good day. And this makes me happy and I feel life goes on and I will be OK. But in order to get such pain reduction I have to do nothing. B/c the minute I start walking or doing things, even little once I am in so much pain that feels meds are not working at all.

    I just discussed this matter with one of my friends; why so many people are on this type meds and they are doing OK for years with same meds, with same doses? Why am I on high doses of LA+BT and still in agony? Why after increasing my LA oxy, I had for about a month better relieve and instead of taking 6-8 BT I was taking 4 only? And what happens after one month? Back to 6-8 BT and no pain relieve. I know I have high body tolerance, but than why narco meds need to be taken by me? Do I make a mistake by taking them if I still in so much pain? I can't go higher and higher in doses and my Dr wouldn't do it to me, so why taking them all together? On the other hand how do I know what would happen if I go off them (of course with my Dr's help)? Would I be in more pain? These questions always on my mind, I would love to have the answers, but seems nobody knows all of them...
    I understand, honey, what you are going through; this is not easy, never was and never will..
    Make sure you name this antibiotic to every Dr you go - they have to stop Rx it to you, this not a joke. Why are you getting so many bladder infections? My daughter used to get them a lot until one of the nurses from that Urology office told her not to use harsh soaps, body washes on her body, but only very mild Dove moisturizing, fragrance free soap and never-ever panties if they are not 100% cotton.
    Would you believe that she did not have any infections since we changed everything? She used to use all those trandy body washes, which smelled good causing irritation in that area and it cost her such suffering without us knowing it.
    Of course drink Cranberry juice (buy the good once with no sugar added. They use natural juice sweetener, but not sugar). I buy for her Cranberry juice concentrate and Pomegranate Juice concentrate with all natural ingr. They are not cheap, little bottle, but don't forget it concentrate. You use 2 tsp on 4 ounces of pure water in the morning and drink it. This would be equal to a glass of juice you buy, but most of them full of sugar, preservatives, etc. Very helpful. And of course nobody can fight the best food for bladder/kidney infections, for cleaning our system as whole - watermelon. This is a very well known delicious natural medicine and if eaten in big doses helps with constipation also.

    All the best to you!

    Last edited by Moldova; 06-29-2009 at 01:32 PM.

     
    Old 06-29-2009, 01:42 PM   #13
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    Re: All over pain. Just keeps getting worse

    Moldova,
    Have you ever considered getting the pain pump or have your doctors ever mentioned it to you? It is used for people that do not get very effective relief from the oral narcotic medications. If I were you I would definitely think about it.

    brian

     
    Old 06-30-2009, 01:13 PM   #14
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    Re: All over pain. Just keeps getting worse

    There are days I think I need the pain pump. That is the majority of the day. The patch and Oxy never get rid of the pain. What is the point? To get rid of the pain or just make it barely tolerable. I sometimes wonder. My Dr. has me trying the injections first again. Not sure what he will mention next.

    You know, my Potassium and B12 are low. That could also add to my pain. I have a defeciency of both and take supplements. Sometimes I forget. Maybe that is causing my pain to be worse in my legs. Anyone's guess.

    I actually drink the light cranberry juice. I just put a little in a glass of water just to add taste. I drink it all day. I figure that is a way to get all my water in and I am not getting the full sugar in the juice.

     
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