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Posted 2/28/2009 2:52 PM (GMT -7)
Hey all-

 

I am glad to have found this forum, I have been lurking and reading for awhile and finally decided to register and join.  I need support from people that know what it is like to go through these issues.  My question is this.  I have chondromalacia patellafemoral syndrome in both my knees with my right one being the WORST!  I was going to a ortho that diagnosed me, sent me for PT which did help some but not for long.  I generally got a non-caring feeling from him.  When I was 17 I was in a bad car wreck and almost amputated my Right knee, had surgery, then plastic surgery to fix, bone was barely nicked.  I have had problems since.  My knees buckle from under me at times, they creak, grind, make horrible noises, thhey swell very badly.  The left knee swells at kneecap but the right knee swells right below kneecap and a little to the left like a pocket, same place everytime.  I put EMU cream on it, use RICE method (rest, ice, compress, elevate) which is all short term fixes.  I am have an appt in a couple of weeks with a new ortho that specializes in knees.  My knees ache so badly today, the weather is bad and that seems to correlate at times.  The EMU helps sometimes, but I wanted to ask if anyone has had any experience with topical creams that have pain meds in them.  I had a friend who's husband used them for knee pain awhile back and she had to go to compound pharmacy to get it made, but she stated her husband's relief was so great.  I am wanting to ask my new doctor about this but would like to do some research first.  Does anyone know what this is called, has anyone used with success?  I am hoping the new ortho will order MRI's on my knees to see what is going on there, the pain is so great but I am not one for narcotics if I can try something else.  Any help would be so appreciated.  Thanks for reading this long post and again I am glad to have found this forum, I see there is some wonderfully caring, smart people here! smilewinkgrin

 

EMTJenn

Posted 2/28/2009 3:37 PM (GMT -7)
Hi, Jenn,
Wanted to welcome you to the chronic pain forum, but am so sorry you have such pain at such a young age. I hope this next orthopod. has some good ideas for you.

My cousin is a pharmacist, and also has serious arthritis in her knees. She gets some types of injections that help - something that's in a series of 3. But she said they can only do these for so long. She's in her 50's though. BUT she also uses a cream called ALCIS which she swears by. You don't need a prescription; she buys it over the web, I think. But it is very expensive. She periodically gives me a tube and I use it very sparingly on my back. She buys it in bulk so it's a little cheaper, but says she couldnt' function without it.

Hope this helps a bit.

Glad you decided to start posting!

PaLady
Jenn- I just read your history and am so sorry for all your losses, but you know in your head you cannot save everyone. Yet you need some help making peace with this in your heart. I encourage you strongly to find a good therapist to help with grief and depression. That's a lot of serious loss in a short period of time for anyone to handle. Hugs to you.

Post Edited (PAlady) : 2/28/2009 3:40:07 PM (GMT-7)

Posted 2/28/2009 3:56 PM (GMT -7)
Jenn,

I wanted to say hello and I am sorry for the pain you are in and have lived through, both physically and emotionally. I wish I could help with some info about your knees but most of my problems are with my back! I did want to mention that I too read a lot on this forum before ever posting anything. I always felt a lot of relief that "hey, these people KNOW what this is like". They may not have the exact same problems as I do but they know what constant pain does to a persons life.

I hope you find the specific information you are looking for on your knees but I know for sure you will find some help and empathy regarding the general condition you find yourself in. I would not have believed how much just hearing people say "I understand" and "I'm sorry" would really help. Best wishes...


Skrape
Posted 2/28/2009 4:19 PM (GMT -7)
The ALCIS that PALady can help, I use it and you can find it at Wal-Greens, so check there first
It is expensive as it comes from Australia. Hope you can find it...
Lots of good luck with the new ortho doc and definitely get a new MRI...
Nice to meet you so wish it was under better circumstance, as I tell my friends, oh yeah
try a moist heat pad for the fibro it can work wonders, get one with an auto shut off...
Walgreen's has these as well..
{{{{{{{{{{{{{{{{HUGZ}}}}}}}}}}}}}}}}}}}}}}}}
Posted 2/28/2009 7:21 PM (GMT -7)
Thanks for all the responses. It warms my heart to feel so welcome, I will look for this cream and appreciate the suggestions!!!

Hugs,

JennEMT

Posted 2/28/2009 11:21 PM (GMT -7)
Welcome to the forum. I am very happy you are here.

Sorry you are having such a problem with your knees. I hope you get some topical rub with medication like you are looking for. I respect your desire to avoid narcotics if you can. Good luck hon.

Just a little note on the side. Your signature line is breaking one of our rules by being a bit too lengthy. Please take a little time to cut it to ten lines or less.
*** 18. No lengthy signatures. Limit signatures to 10 lines or less. Moderators will edit and/or remove signatures that are too long

Thanks and keep posting.

Lindaloo
Posted 3/1/2009 4:55 AM (GMT -7)
Hi Jenn,

 

Welcome to Healing Well. You have come to a very good place and I hope you will hang out with us.I am so sorry to hear of the problems with your knees. I have had knee problems since the early 80's and have had a total of 5 arthroscopic surgeries on my knees. The last round of surgery was in 2004 and both knees were done 3 weeks apart never again, that was too close together and I was not able to get around much. If I sat down someone had to be with me to get me back up on my feet because my knees could not take the pressure of pushing myself upwards, might want to keep that in mind. Even if I went to the bathroom my husband had to come lift me up or if I sat on a chair or couch.lol. Of course I am much older than you. I have had four scopes on the left knee and one on the right. Torn meniscus on the right knee and this last left knee was for a partial tear of the ACL. On my first postop visit on the left knee, I caught the toe of my shoe in the cracks on the handicapp ramp and started to fall and while trying to break the fall I severely twisted my left knee and screwed it up royally as my ortho said. I tore tendons and ligaments and worse a Don Joy brace for one year. It ended up being an 18 month recovery for me because I was doing Remicade infusions for crohns disease and know one including my gi knew it would interfere with the healing process. My prior scopes were a breeze in healing because I was not on Remicade back then and I did not reinjure the knees right after surgery,lol.

 

I am very glad to hear your new ortho specializes in knees, that a very good sign, its always best to get one that deals with a specific thing as far as I am concerned. I feel certain you will be getting new MRI's and most likely get those knees scoped depending on the outcome of the MRI. My second knee scope my dr cleaned alot of the chondromalacia up and was able to really help my knee a bunch. I had a torn meniscus then too, plus alot of scar tissue from the first scope. I don't know if you had arthroscopic surgery before, if not let me tell you its so much easier than the large incision surgery. I use to use a ton of the Emu stuff on my knees and hips. Oh that stuff stunk,lol.

 

Again just wanted to pop in and say welcome aboard.

 

Susie

 

 

Posted 3/1/2009 5:05 AM (GMT -7)
It's very late, EMTJenn ~

I am sorry you have such problems as you do. Maybe work on them one at a
time. That's what I'm doing with the help of a friend here on the board.

I was devastated by ADD when I was 45. Diagnosis and treatment saved my life.l
It is a problem that is far reaching and little understood. Any questions: See me.
I'm the poster child for adult ADD. Once that is cleared up, maybe your other
problems will seem a little lighter?

Later, EMTjenn,
Pamela
Posted 3/1/2009 7:08 AM (GMT -7)
Greetings.....

The ingredient used in the ALCIS cream is trolamine salicylate.......same as in aspercreme. No difference. You just pay a lot more.

copy and paste from med pharmacy......

Trolamine salicylate topical cream products like Aspercreme, BenGay and Sportscreme contain trolamine salicylate, a chemical similar to aspirin. The FDA lists these drugs as safe, but not necessarily effective for pain relief. Trolamine salicylates are available over-the-counter. The makers claim salicylates seep into the skin to help relieve arthritis pain.

Does charge more for same thing with a different name sound familiar? Putting on too much or too often in the cream is one way to OD.

Link from a 2005 year discussion on this cream.

https://www.healingwell.com/community/default.aspx?f=24&m=386288
Posted 3/1/2009 2:51 PM (GMT -7)
Andrea,
The main reason I mentioned it was that my cousin is a pharmacist, has worked as one for 30 years, and it's the only thing that keeps her going. I have to buy the Aspercream, because there's no way I could afford the ALCIS, but I do notice a difference between the two when i use them. I think it may have more to do with the totality of the ingredients than just the main one. My cousin was surprised herself. She buys it in bulk with a nurse she knows; they split the cost so they can get them a lot cheaper. But I think like with everything, it's highly individual. If something like that helped keep me working, it would be worht the money. But my biggest problem is nerve pain in all its varieties. LOL Neither of these creams do anything for that, sadly.

PaLady
Posted 3/2/2009 8:41 PM (GMT -7)
Hi EMTJenn,

I've been away from HW for a few days, so I just want to take the time now to welcome you to the CP board of HW. Sounds like you are already getting good advice from everyone! This is such a wonderful place to come for support & understanding, everyone here is like a family! Keep posting with us!

Skeye

ps - Way to go being an EMT! You guys do so much for the community (and are often under-recognized)! I have a lot of respect for EMT's & paramedics (although fortunately, I've never had any personal experience with you guys from a patient perspective, and I hope to keep it that way)! I was actually close to becoming an EMT myself (I've always wanted to & I had a great opportunity open up at school), but then my injury happened, and well, it hasn't worked out since. Maybe one of these days!
Posted 3/3/2009 4:33 AM (GMT -7)
Has your doctor ever tried you on NSAID's (non steroidal anti-inflammatory) medications. My friend also has Chondromalacia and had a dramatic reduction in pain using a prescript ion COX-2 called Celebrex. I am certainly not a doctor, but you might want to talk with yours about non-narcotic options. Medications to reduce the inflammation and swelling may help with the pain and origin of the problem more than trying masking the pain with narcotics. Good luck.
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