Confused & Tired of Pain
 

Well, I am not sure where to begin. I am 44 years old and have always been in great health. I have been running for the past 15 years, and started to train to run a half marathon last year. I did some over-training and started having some pain in my knees.

So, I stopped running and went a saw a chiropractor who told me that my knees weren't actually the problems, but it was my ankles. I didn't run for the next 7 weeks and did everything I was told..rest, ice, elevation. The pain did get better, so I started running again. Well, I was not able run more than one mile before the pain in my knees would start again. I never felt any pain in my ankles.

At this point, I decided to go to an Orthopedic doctor. Well, he told me that the pain was coming from my back and wanted me to do some physical therapy. Half way through therapy I started noticing that my feet were tingling and went back to the doctor. He then said that I needed to see the Spine Orthopedic in his office. I had a bone scan, which showed mild arthritis in my back.

I ended up having 2 facet joint injections, which gave me relief in back...because at this point, I was having low left-sided back pain, as well as COLD feet with tingling and burning sensations from my knees down to my ankles. I had a nerve test done which came back showing no nerve damage. I then had 2 lumbar injections, which I am not sure why they did...I didn't get any relief from these.

By this time my pain had doubled and I could hardly walk because my ankles were sore and my legs were starting to swell with most of the swelling being behind my knees. I was prescribed Lyrica, which honestly gave me no relief and made me feel really bad. I couldn't even process a thought. So, he then prescribed Gabapentin, which didn't give me any relief. So, now I am limping and barely able to make it through the day because my pain is so bad. So, I then had left and right ankle MRI's which showed numerous things wrongs.

Orthopedic doctor told me that my ankles were the problem and told me to rest, ice, compression, elevation and gave me a prescription for Ketoprofen and I was PRN. No f/u appt. was scheduled. Within 4 days of icing my ankles in a cold bucket of water, the swelling got worse and so did the pain. From here I have had an arterial doppler, a venous doppler, an MRI of my right knee (because it is has more swelling than the left) and numerous blood tests... all are normal.

Went back to Orthopedic and he referred me to the Ankle Orthopedic Specialist in their office. The ankle orthopedic spent approx. 5 mins with me and told me that he couldn't help me because if he treated my ankles he would make my pain worse because I have CRPS. He referred me to physical therapy and to see a pain management doctor.

I just saw the pain management doctor and he said that he is not totally convinced that I have CRPS, even though I have several of the symptoms...cold feet (not everyday now), burning sensations in legs, pain in ankles and swelling in knees (especially at the joints). I don't have any of the skin changes, but I am now starting to have some needle pin feelings in my legs.

The pain doctor wants me to have a lumbar sympathetic block to confirm my diagnosis. I am scheduled for this on 4/8. I have started physical therapy. I am open to any advice. What should my physical therapist being doing with me to make this as productive as possible? How do I find a doctor that actually specializes in CRPS?

I have concerns that my pain doctor's schedule might be too full, and I won't be able to get the necessary treatment without too much time lapsing between my visits. I am trying to stay positive and keep my faith strong, but some days the pain just beats me.

Am I on the right track? I am so tired of seeing so many doctors and just want to feel good again. How do you go from running 3 to 4 miles a day, to not even being able to walk a block? :(

Hi vsue65, and welcome-so sorry you are here. First of all, we who have rsd NEVER use ice- or have injections in the rsd site. This is a disorder that many many Drs. are not knowledgable. I was misdiagnosed with RA, but negative RA tests. I flew to a well know sports injury ortho group and was diagnosed in 1 minute and sent to hospital to nuclear medicine dept of hospital to confirm. He started me in physical therapy. I came back home and found a neuro-more tests-confirmed found ortho and continued physical therapy.
I'll write more later. your new friend, loretta

Oh Vsue65 !
 

There are SO MANY things in your post that jumped right out at me! It was almost like a 'Deja Vu' thing!
My problems started out exactly like yours!! Mainly knee problems from over-exertion on the tread mill...

And the 'burning' pain that you describe! :hissyfit: and the cold feet.....oh my!!

I'm impressed with what some of your doctors have told you!
When my problems started at the knees, well, that's where the focus was and I ended up wasting THOUSANDS of $ on MRI's, Xrays, Synvisc (Rooster Comb) Injections, Cortisone Injections...ALL targeting the KNEES......

When in fact, after going in a HUGE circle of specialists, blood work, Chiropractors.....oh my I could go on all nite here...but this may be of interest to you!

Check out the PN (Peripheral Neuropathy) Forum !
Here is the direct link to click on...

http://neurotalk.psychcentral.com/fo...aysprune=&f=20

My issue ended up being in the peripheral/sympathetic nerve chain and the best treatment I've found was by targeting the Lumbar Spine, because that is the area of the spine that controls the nerves in the lower extremities! In other words,....after all was said and done, there was NOTHING whatsoever wrong with my knees and feet.
Not to steer you away from the RSD! But it's obvious that you aren't getting any clear direction just yet, and your story sounds so much like mine, I just HAD to jump on this!

There is such a fine line between RSD and PN that all too many Drs. basically treat it as tho they are one in the same.
The symptoms are so similar!

BOTH the RSD and the PN forums are active and full of wonderful people! I felt so compelled to have you take a peek at the PN forum and do some checking there as well.
See what you think, and maybe it'll help you in your questions to your Drs.... Sometimes they learn from US!

So glad you found this wonderful forum!
I sure wish I would have found this place B4 I rushed into a bunch of needless testing and getting the runaround from all the Drs!

:hug:
Rae

Thanks for your reply
 

Thanks so much for your insight. So, do I go ahead with the lumbar sympathetic block? If I do get some relief, is that a positive diagnosis? It sounds like the relief is very temporary and more injections will be necessary. If so, how long do you have to wait between injections? As to the physical therapy, do you have any suggestions on specific things that should be targeted? Is ultrasound effective? My ankle is still pretty swollen and sore. I MRI showed that I have a slight tendon tear. The doctor said that it should have healed by now... but it hasn't. So, I have a lot of pain in my ankle. I know I sound like I am rambling, but again, I feel like I am running around in circles. :confused:

There is really nothing that will give a "positive" diagnosis of rsd. The final diagnosis is based on a thorough exam, past medical history and lots of tests.

A block is generally one of the first things that is done when rsd is suspected. Definitely get it done. The problem with them is that they may or may not work. If the block gives you no relief from the pain, it doesn't mean you don't have rsd, it means the pain is SIP(sympathetically independent) rather than SMP(sympathetically maintained). If there is relief, the pain is still SIP and it's likely a series of blocks will continue to help. Sometimes it doesn't help and eventually quit helping at all. Docs will generally schedule one or two a week depending on how they like to do things.

Any injury in a rsd site will take a very long time to heal. Circulation in the affected area is compromised which in turn hinders the body's ability to heal. It's the most likely reason the tear hasn't healed yet.

None of us respond to treatment, meds or even physical therapy(PT)the same way. Because you have a tear in a tendon, PT for you will be different than someone with straight up rsd. They're not going to risk making the tear worse, possibly completely tearing it to the point surgery is needed. That wouldn't be a good thing. PT will have to decide how to approach things for you just as they don't treat everyone with back pain the same way.

The only advice I can think of at this point is to get the block done, don't push yourself in PT to the point it has you in agony because that will make rsd worse in the long run. The saying no pain, no gain, does NOT apply to us....ever! Ice should never be used because it constricts the blood vessels even more and as I said before, the circulation is already compromised, not to mention it just increases the pain. Keep moving is key. If you don't use it, you could lose it. I almost lost the use of my leg due to not being able to walk on it because of the pain. It was hard, but I'm still walking today after a round of water therapy. Maybe you could look into that. It really is 10 times better than land-based therapy for us. If possible, warm water is the best.

Karen

Hi. I am sorry for your pain. I have a similar story. I was very active and thought I had an injury from the inner ankle pain I had so I went to the orthopedic. He did his dx tests and though there was no inury he put me in an airboot. My pain kept increasing to where I was in bed full days crying through pain. I was sent the neurologist who preformed mris,emgs,doppler I could go on. Then many other opinions,reumatologists etc. I was dx with peripheral neuropathy and also rsd. The rsd dx was not right away due to I did not have all the symptoms or the usual cause for it. I still have rsd though. I did have the sympathetic nerve block which increased my pain. For some though it helps for a time being so you can get back to being more active. It is not a good diagonstic test though some docs still do it for that. Through the many and when I say many doc it is understatement it is very key to work with one who deals with rsd. You stated you had an mri but have you seen a neurologist? I think it is important. Have you had a complete bloodwork to rule out other conditions etc? As for PT what helps one person does not for another. For me I did not have good PT result so has to work on my own to be more active though I am still limited and like range of motion is not good which is very key to recovery.I wish I had more answers for you. If you want an email buddy I am here. Hang in there

Vsue65
I grieve when you grieve,,your story sounds like echo's of us all,,read the thread 'Meltdown'.
Most of us hear were active when this happened,and those who were not , their active lifestyes were dissmayed,,,,I do try to give respect when its deserved,to people [MR and MRS, Miss ,but when it comes to rsd,,I dont use capitals..I know its big, I know its nasty,It might even take my life[If God ALLOWS it only}..he may be useing it as a refineing tool to refashion me or a correction rod,, But I wont call rsd "Sir" or "Mam",,because i dont respect it,,I hate it,,I could be wrong,and I am sorry if I am,,,but I hate and dispise what hurts and destroys ,,Maybe it just the resentment in me,,And I am sorry to the board if I am out of line,,Im just tired of my life being consumed with this disease and seeing dr's....My life has changed dramacticly because of this,,but maybe I, through Gods grace,will not let this disease lead me around by my nose anymore,,I quit drinking 10 yrs ago,,I quit drugs 15yrs ago,,,"Thats It",, Gods word says you are a slave to whatever masters you,,,so I Quit rsd!!!!!!!!!!!!!!!!!!!

AND you, my friend Bobber and everyone here..are entitled to feel angry..cheated and exausted from the daily beat up of our illness... If God spun his rolladex and my name flashed for the next "pickup" I would extend my arms up to meet him... with a smile in my heart as I know God has a lan for us..and as long I am here and to assigned to endure "rsd" (look bobber, small letters...) then I will do it proudly but when my time has come to join my Dad and other loved ones.. I will be ready and painfree... Se ya..rsd!!!

Much love to you all, my family!

Kathy:grouphug::grouphug::grouphug:

Dear KS {see kathy..I used captitals LOL}
I agree ,,,,,,,,,,,, with rsd ,mounted on top of the way of this world,,i dont think I"ll be kicking and screaming to stay when the Lord comes to get me,,I love my wife and my children and friends dearly,,but I love the Lord even more,,,,He will take care of them when Im gone,,they belong to him anyway,he created them{psalm 139],,,,,,so,,,Im good,,,and as for your wanting the Lord to bring your Dad and loved ones with him when he comes to get you....Yes Mam,,,he is going to do this,,,,,1st thessalonians 4:13-14
It has to be true kathy,,for his name sake,and you have it in writing my friend,,,,

Thank you, bobber..You are a true friend..I think it is legal to have a beer in heaven..if so..we will toast our arrival in getting there..leaving rsd behind!! Sound good to you??
Kathy:grouphug: