Knee Clicking and Hurting a Lot!

msellie · 06-08-2009, 08:00 PM

Quote:

Originally Posted by ali12

Thank you Daniella and Ada for your input!!

My knee is hurting quite a lot again today. I have been sat with it bent on the bed and have noticed that after about 2 minutes or so, it starts hurting a lot and locks up. When I manage to straighten my leg, I get a deep aching pain that can take a few minutes to go and brings tears to my eyes. I have been told that I need to keep bending my knee for PT but it is getting pretty hard as it is way too painful sometimes! I'm going to ask my mum to rub some of the anti-inflamitary cream into my knee in a bit again to see if that eases the pain any and also take a Tramadol to see if that works. Tramadol doesn't help with my RSD pain but my mum said it might be worth taking one to see if it helps any.

Daniella - I totally know what you mean about it being hard to figure out what is RSD and what isn't! Most of the time, everything turns out to be from the RSD but the first time you don't go and get it checked, it will probably turn out to be something else that can be easily fixed - it's so annoying!!! I'm looking forward to when we split up from school to be able to relax a bit! I'm not sure what we have planned yet but me and my mum are going to see my grandad in Spain in August for a few days so that should be nice as I haven't seen them for a few months! Thanks again for your input!

Ada - So sorry to hear about all the injuries you have had to deal with!!

I can't imagine how hard it must have been to deal with all of them for such a long time without getting a diagnosis! It's awful that so many doctors just let us suffer in lots of pain without getting any help! I'm Hypermobile so some of the joint clicking in my knee could be from that however I have never noticed it before. Me and my mum have also been wondering for a long time whether I could have something else going on as well as the RSD and have mentioned it to my PT's and all they say is that it is possible but they really can't tell until we get the RSD and Dystonia under control more which is really stressful!! They have mentioned that I could have some spinal issues as I sit very curved but wont really look into it until the RSD gets a little better. I'm not sure when my next appt is with my PTs but will definitiely speak to them and see if they can have a look at my knee and see if anything else is going on. Thanks for all the info!

Ali, I'm sorry to hear you are having such pain and distress. In addition to RSD I have been diagnosed with chondromalacia patella, essentially a thinning of the cartilage under the kneecap. It can be quite painful and straightening out your leg can cause the pain to increase (this doesn't mean you shouldn't do it though). There are also different stages of CM , i.e. mild to severe, and different things can cause it to flare. I do know that at your age your body is still forming cartilage (adults should be so lucky) so I would imagine that that is in your favor if you do have this. I do have the clicking and crunching sound sometimes when my knee is tracking improperly (it always rights itself. I know that anti-inflamatories and strengthening of muscles especially the quads help tremendously. The CM pain is not ever-present like the RSD. If you have an ortho, PCP, or another PT in the practice, maybe just give a ring and see what they think. Hang in there and try not to stress too much. Easy for me to say I know.

Smoke_666 · 06-08-2009, 08:45 PM

I know all about the clicking, at least in my case. I found that the more I bent in, in pt or whenever, it seemed like it swelled, and it got much worse. I cannot obviously tell you what to do, but...stop bending it for a few days more than necessary. The more you exercise it, the worse it clicks and then the worse it hurts, right? Give it some rest, the swelling goes down, the clicking lessens, and it hurts less. I also found that using like an ace wrap that went all around the knee cap but not over it kept me from bending it too much as well as I guess keeping it from moving to the side, which I think is what made it worse. I used that tape stuff that sticks to itself and made like a x with it all around my knee, not too tight, and used the pain to tell me how close I could actually get to my knee cap with the tape. A happy thing; the clicking doesn't happen anymore, but for once in a great while when I have lifted too much weight, and then it doesn't hurt and click for long. Good luck, I hope this helped you. Later, Smoke

ali12 · 06-10-2009, 09:53 AM

Thank you all for the kind words and advice - I really appreciate it!

My mum emailed my PT's yesterday and told them about the pain in my knee and my PT called her back this morning to ask what sort of pain I was getting and where it was etc.

When my mum explained things to her, she said that she doesn't think it is from the splint as the area where I am getting the pain, isn't where the muscles work overtime when they are in the splint.

We have been adviced to go and see my GP if things don't settle down anytime soon to see what he thinks, especially seeing as though the pain I am getting in my knee isn't like RSD pain. They also suggested getting some really strong anti-inflammitaries to see if they help any.

I have an appt to go and see my PT's on the 23rd I believe (that was the earliest they could get me in as they said it seems as though a lot of children are developing chronic pain conditions at the moment) so they are going to take a look at my knee then to see what they think is wrong.

If the pain continues, I think we will probably go and see my GP as it's making me feel pretty sick and i'm not sleeping well. I think it's worse as I already have RSD in that leg and think I might have something else going on on top of that.

Thanks again for the advice, i'll keep you all posted when I can!!

daniella · 06-10-2009, 10:07 AM

I have a ? for you and am sorry if you have done this and I missed that part and I don't know with insurance/finance issues if this could be a possible but have you ever come to the US to see about treatment? I know some places you can even send your records to the place and they can tell you if they feel you should come to their facility. I did that with Mayo. I am not saying where you are from is not good on RSD treatment but just a thought. I hope you feel better soon and get more answers.

ali12 · 06-10-2009, 10:21 AM

Quote:

Originally Posted by daniella

I have a ? for you and am sorry if you have done this and I missed that part and I don't know with insurance/finance issues if this could be a possible but have you ever come to the US to see about treatment? I know some places you can even send your records to the place and they can tell you if they feel you should come to their facility. I did that with Mayo. I am not saying where you are from is not good on RSD treatment but just a thought. I hope you feel better soon and get more answers.

Hi Daniella,

We did look into going to the US for treatment at one time but don't have the insurance or money to really go. My mum has already said she would get me treatment there if she could but it seems as though the US has similar treatment approaches to the UK.

When we discussed it with my doctor, he said that it would be pretty hard to get treatment also because of us being from another country and might be hard to find someone to sponsor us to go over. He also said that treatment is pretty much the same although the US does the SCS and Pain Pump where the UK doesn't under 16.

It is something worth looking into more though and i'm sure if we could find a treatment that isn't available in the UK that might help me and a way to get over there, we would go straight away!

Thanks for the suggestion and your support!

Dew58 · 06-10-2009, 11:24 AM

I have the symptoms you describe as it is my right knee that was injured and brought RSD into my life.

Reading what you stated about your knee becoming locked is a symptom of a meniscus tear, with a possible floater of cartilage inside the knee joint.
You do not have to have surgery for this tear, unless it becomes too painful..but even then..get a 2nd and 3rd opinion! Your age is in your favor.

Before I had my first surgery, I was a very active woman;fishing,hiking,working out, swimming,etc. After the injury at work, I was told I had a median meniscus tear by 2 doctors, and it needed surgery. I had the surgery, be it 2 months after the injury as WC kept delaying treatment. I also con't to work 9-10 hrs days in constant pain. After the surgery, the 1st ortho told my hubby that I had arthritis and chondromalacia patella, and should watch my weight.
He did not mention that he had been very aggressive with his tools and cut deep into my cartilage(found this out from 2nd ortho for 2nd opinion). The 2nd ortho doc said my weight was not an issue, and my arthritis was nothing to talk about as it was less than a 47 yr old woman would have been thought to have...
I was released back to work too early, with burning pain in tow and being ignored by doc and pt, from WC pressuring 2nd ortho doc.

I was re-injured at work, almost 4 weeks in, and this time it was a lateral meniscus tear that went across and re-injured the previous median tear. This was the final straw...a second surgery.

After 2nd Surgery:
Now, I was being told that I have arthritis,chondromalacia patella in the 3rd stage, and needed to lose some weight! The complaints of the horrible burning pain..again went ignored. This is the same doc that told me that 1st doc cut too deep into my cartilage..and released me MMI worse off then when I walked into his office for a 2nd opinion.
He is also the doc that I had to remind that he stated my pain receptors had reversed..and only then did he write in his MMI report that I need to see a PM doc as there is possible minor RSD/CRPS I or CRPS II.

Each surgeon cut my cartilage.. which in turn brought my knee joint closer to bone on bone. The worst spot is the inside knee(median), where the 1st surgeon did his thing, and the 2nd doc cleaned up.
I have learned doctors cover for each other, and also don't want to bite the hand that feeds them, the ins companies.

So..you and your mom work together and proceed with caution concerning any future surgery.

Dew

daniella · 06-10-2009, 02:21 PM

Yes I did not know how easy it would be to come to the US but thought maybe even a different approach may benefit you. A doctor to look outside the box as I call it. Like I told you the teenage girl I know here got a spinal cord stimulator though now she is 17 I think but anyhow before had one and it did not work out. Also she was in a such a bad state before not in school,wheel chair so on and now she is doing a world difference out of the wheel chair,went back to school etc. I know there are some bad experiences with the scs too as why I did not do it yet. I know though this girl traveled a lot to many places as well but she lives in the US. Many thoughts and you are so strong.

loretta · 06-13-2009, 10:03 PM

Quote:

Originally Posted by ali12

Thank you Daniella and Ada for your input!!

My knee is hurting quite a lot again today. I have been sat with it bent on the bed and have noticed that after about 2 minutes or so, it starts hurting a lot and locks up. When I manage to straighten my leg, I get a deep aching pain that can take a few minutes to go and brings tears to my eyes. I have been told that I need to keep bending my knee for PT but it is getting pretty hard as it is way too painful sometimes! I'm going to ask my mum to rub some of the anti-inflamitary cream into my knee in a bit again to see if that eases the pain any and also take a Tramadol to see if that works. Tramadol doesn't help with my RSD pain but my mum said it might be worth taking one to see if it helps any.

Daniella - I totally know what you mean about it being hard to figure out what is RSD and what isn't! Most of the time, everything turns out to be from the RSD but the first time you don't go and get it checked, it will probably turn out to be something else that can be easily fixed - it's so annoying!!! I'm looking forward to when we split up from school to be able to relax a bit! I'm not sure what we have planned yet but me and my mum are going to see my grandad in Spain in August for a few days so that should be nice as I haven't seen them for a few months! Thanks again for your input!

Ada - So sorry to hear about all the injuries you have had to deal with!!

I can't imagine how hard it must have been to deal with all of them for such a long time without getting a diagnosis! It's awful that so many doctors just let us suffer in lots of pain without getting any help! I'm Hypermobile so some of the joint clicking in my knee could be from that however I have never noticed it before. Me and my mum have also been wondering for a long time whether I could have something else going on as well as the RSD and have mentioned it to my PT's and all they say is that it is possible but they really can't tell until we get the RSD and Dystonia under control more which is really stressful!! They have mentioned that I could have some spinal issues as I sit very curved but wont really look into it until the RSD gets a little better. I'm not sure when my next appt is with my PTs but will dHiefinitiely speak to them and see if they can have a look at my knee and see if anything else is going on. Thanks for all the info!

Hi Ali,
I'm so sorry about your knee pain. I sounds like you definetly need to have a x-ray, MRI to see what's going on inside. I went to an orthopedic knee specialist before rsd for clicking sound and knee pain. That was about 15 years ago, two years before rsd. he said the tests showed osteoarthritis. I had been real active all my life, track, water skiing, snow skiing, running, 40 miles a week. He just had me do adjustment on my aerobics class so as not to impact the knee. It wasn't the kind of pain you are having by any means. But now I have RSD in my knees too. full body. If you were to push your fingers on your knees or back of your knees , is there an indent that stays a while. That shows water retention. And there in water retention when there is inflammation. Inflammation goes along with RSD, and fibromyalgia. Someone posted about anti-inflammatory diet last week and I've been on it since. about a week now and noticed a big decrease in fluid at my elbows and less bone pain. I'm going to stay on it. There are definite foods that build up your immune system and foods that heighten inflammation. I've been doing additional research. One site by a rsd specialist from Florida that is now retired, but has his website up is www.rsdrx.com There is a part about diet called the 4 F's and also the part called puzzles is really good. Puzzles is a list of about 140 questions by his patients and his answers.
Hope they do the right tests to see inside your knee. I want to tell you how much i enjoy your writings and how encouraging you are to all of us. I'm 61 and my daughter is 30 so you feel like a granddaughter to me. Take care and say hi to your mum for me. Your friend, loretta

ali12 · 06-14-2009, 03:35 PM

Quote:

Originally Posted by loretta

Hi Ali,
I'm so sorry about your knee pain. I sounds like you definetly need to have a x-ray, MRI to see what's going on inside. I went to an orthopedic knee specialist before rsd for clicking sound and knee pain. That was about 15 years ago, two years before rsd. he said the tests showed osteoarthritis. I had been real active all my life, track, water skiing, snow skiing, running, 40 miles a week. He just had me do adjustment on my aerobics class so as not to impact the knee. It wasn't the kind of pain you are having by any means. But now I have RSD in my knees too. full body. If you were to push your fingers on your knees or back of your knees , is there an indent that stays a while. That shows water retention. And there in water retention when there is inflammation. Inflammation goes along with RSD, and fibromyalgia. Someone posted about anti-inflammatory diet last week and I've been on it since. about a week now and noticed a big decrease in fluid at my elbows and less bone pain. I'm going to stay on it. There are definite foods that build up your immune system and foods that heighten inflammation. I've been doing additional research. One site by a rsd specialist from Florida that is now retired, but has his website up is www.rsdrx.com There is a part about diet called the 4 F's and also the part called puzzles is really good. Puzzles is a list of about 140 questions by his patients and his answers.
Hope they do the right tests to see inside your knee. I want to tell you how much i enjoy your writings and how encouraging you are to all of us. I'm 61 and my daughter is 30 so you feel like a granddaughter to me. Take care and say hi to your mum for me. Your friend, loretta

Thank you Loretta for your advice and kind words - I really appreciate it!!

I am still dealing with a lot of the knee pain. Me and my mum went out for a bit today and my knee gave way about 6 times so it seems as though it is unstable sometimes and whenever I am walking, I get a sharp pain in it, especially if I bend or twist my knee. I never know when my knee is going to give way, it just happens and I have to grab onto the nearest thing or I fall.

I have been diagnosed with Rheumatoid Athritis so will look into that also as some of the pain I am getting does feel like a bone pain. I don't think that the pain in my knee is RSD, I know what RSD pain is like and it isn't like that at all - it is more of a muscle / bone pain.

My mums trying to make an appointment for me to see my GP but it usually takes a few weeks to get into see him as he is always so busy (we really need to find another but he is supposed to be the best in the area). I have an appt with my PTs on Wedneday next week but know we probably wont get any joy from them as they are always quick to put everything down to being RSD without ruling out anything else.

I had my knee bent slightly yesterday and after about 2 minutes, I got a lot of fluid build up in it and whenever I pressed down on it, it felt like it was really swollen so I definitiely think there is some swelling there, though it tends to come and go.

I just want some relief from the pain as it is really painful at times and brings tears to my eyes. It is making it worse also as my dad is being really awkward and saying that I am faking it or it can't be that bad - even though my leg is really swollen, blue and spasms all the time!!! My mum is constantly trying to tell him about RSD but he never seems to listen. I wish he would come to hospital appointments with me but he wont - he has been about 2 times in the last 2 years I have had RSD!!!!

Thanks again for the info. I will keep you all updated as to what we find out - hopefully I will get some answers soon!!

daniella · 06-14-2009, 04:51 PM

Hi. I am so sorry about your continued pain and your dad. I am glad your mom is there for you. I can relate as my mom is my hope but I have spent the day crying from other family members. It makes me so upset/lonely/frustrated I could go on. I am not sure my point other then I understand. You stated you have arthritis and I think stated other conditions other then rsd though I could be wrong. Anyhow do they know why this is for you? I am not sure if your rsd is from an injury but it seems like you have a lot other going on in your health as do I. I am older but still too young for some of the things and part of what I was trying with no luck is to find they why this is happening. Like at one time and still it was leaning towards auto immune. It may not take the rsd part away but may help other conditions you have and in turn make you feel better. I also wonder if the PT is not the right type of things for you in the current? Not saying not to do PT but just maybe different types of workouts. I have no clue just trying to think out of the box. Well feel better and you are not alone.

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