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My TTS/RSD story (Long!)

Posted by CReece on 10/29/04 at 13:01 (162422)

Hi everyone! I thought I would post my TTS/RSD story (up to this point in time) in hopes it might have some useful information in it for someone out there who is also suffering.

I got out of bed Jan 1st of this year and my left foot hit the ground and went out from under me with a horrible pain in my heel. This started my journey through TTS/RSD/? misery. I put off going to the doctor for a couple of weeks because I thought it would pass. Boy, was I ever wrong!

I went to the doc and was referred to a podiatrist. He told me I had a postive Tinel's sign and gave me a series of 3 cortisone shots. Ouch! Shocked the dickens out of me. I still have a white lump on my inside ankle from that experience. He also tried orthotics, and physical therapy and an anti inflammatory. That's when things got really ugly. The physical therapist couldn't figure out why I couldn't move or walk on the foot w/out horrific swelling so she suggested I go on a walker. I continued to get worse and lost a lot of mobility on my left side, etc. I finally got so frustrated, I begged her to put me on a cane, which she did. I still saw little improvement. I was seen by a vascular surgeon, a neurologist, and a rheumatalogist. That's the ones I remember. The vascular surgeon thought I had a blood clot, the neurologist thought I had mild tarsal tunnel and the rheumatalogist thought I had RSD. I felt like I was going crazy and became very depressed. I decided to do something drastic.

I packed up and moved 320 miles away from my husband to be closer to my family who had more time to work with me. I also saw a pain clinic doctor who told me to get off the anti-inflammatory immediately and prescribed neurontin. This is where my luck changed (unbelievably) overnight. Within 24 hours of stopping the anti-inflammatory, I had regained most of the mobility in my left foot (which by this point has osteoarthritis as well from lack of use.) I called the doctor and he told me not to take the neurontin if I was improving being off the anti inflammatory. I stopped going to physical therapy, stopped icing the foot and was within 2 weeks able to limp slowly w/out the cane. I got me some New Balance tennis shoes, upped my vitamin B dosage and I am slowly, but surely recovering some each day. I still have a long way to go since my entire body is WAY out of alignment from the past 10 months of this experience.

Here's a few things that have worked for me up to this point - (I would only change 1 thing at a time to see how my foot reacted to make sure I didn't get too far off track.)

1) Stopped icing and stopped stretching the foot. (For some reason, the stretching of my already really tight leg was hurting more than helping me)
2) Massaged feet, knees and legs several times a day concentrating on 'tight' areas anywhere in my body. (Similar to active release theories, but on a much smaller scale). I of course don't touch or let anyone touch the 'tarsal tunnel' area. I was very blessed that my mom and hubby were very committed to the massage. My mom cried when she saw me walking again without a walker or cane.
3) Vitamin B - Super B Complex and Vitamin C and a regular multivitamin
4) Omega 3 Fish Oils
5) New Balance tennis shoes (with rollbars)
6) I made a 'tent' with pillows and blankets for over my feet as night, keeping them warm and cozy w/out anything actually touching them really helps me. My feet are so sensitive to the air conditioner.
7) 5 mg of Elavil when the pain is rough and I just can't sleep. (I cut the 10 mg pill in half) It's so important to get good rest while you're trying to heal. For the first 4 months of this experience, I had only slept about 3 hours a night, so I was even more miserable.
8) Started eating organic veggies, etc., healthly food as much as possible. I look at everytime I eat as an opportunity to support and nourish my body as it tries to heal and right itself.
9) Light exercise- deep breathing, gentle stretching of arms and leg that wasn't affected. Very gentle, but consistent. I leave the exercise VCR tape in all the time and during commercials I exercise while sitting in my recliner. Every bit of movement and flexibility I gain seems to really help my overall condition.
10) I stopped elevating my feet above my hips with pillows and/or quilts. This small change really helped. I use a flat sheet now since I have to have some cushion for the ankle when I lay down, but I no longer use a pillow to prop my foot up. Keeping my back, hip, knee and foot always in line seems to help a lot.

Now I have to decide when/if to go back to doctor and try to right my limp/alignment problems. I hope I can avoid surgery. Right now I feel SO blessed, the only time I have any real issue with my feet is with shopping. (Thank goodness for the Internet). I hope a tidbit or 2 in this long post may help some other person who is suffering from this horrible, horrible condition.

Blessings to each and every one of you - you are not alone! CReece

Re: My TTS/RSD story (Long!)

rekha on 10/29/04 at 13:43 (162425)

wow, have you been through a lot.....so have you officially been diagnosed with RSD? do you have the other symptoms? ice is a no-no for RSD and will make it worse...

I also was suspected of having TTS, but my emg came back negative and the dr's think I have RSD in my ankle instead...I am scheduled for a block this tues/election day. I have swelling, red color, hypersensitivity and extreme pain which is unusual for TTS to happen since injury date was oct 1st

I am also in excruciating pain, limping around..unable to walk much....surviving on narcotics...pinning all of my hopes on the block. I am hoping to beat this monstor RSD.

thanks for sharing your story..and hope you continue on your path to recovery.

Re: My TTS/RSD story (Long!)

Kim on 10/29/04 at 22:14 (162447)

CReese,? how much Vitamin B do you take a day? I just started today to take a Vitamin B12 & was wandering How much to increase to. Please let me know. Thanks

Re: My TTS/RSD story (Long!)

Janice C on 10/30/04 at 21:33 (162577)

CREESE, my sister in law who has had PF a long time sent this after I forwarded your message to her. Hope it helps. Janice C

This lady needs to know about the neat night splints my foot doctor
prescribed for my feet. I had forgotten about them since I have hardly
been able to walk lately and have been putting them on at night now to
keep my heels off the bed because I was in so much pain when I went to
bed that I couldn't go to sleep with out hydrocodone and I have been
sleeping so good now with the night splints.\

They are the most wonderful things created and easy to sleep in. The
ones I use to have were these hard plastic things that were difficult but
now they came out with these wonderful soft ones and my feet are so good
when I step out of bed until I am on them too long during a day.

They are called Healwell CUB. The writing is so small but I think it
says they are made by Florida orthopedics. Miramar FL. 33025
My insurance paid for mine because my foot doctor prescribed them. I
think they would be of big Help to you too. I can't recomend them highly
enough. You are not suppose to walk in them, it wrecks them. He also
gave me some things to wear during the day that are really great since we
have new carpeting and we don't wear shoes in the house. It is too
painful for me to walk on the kitchen floor without shoes so I wear shoes
in there but around the rest of the house I wear these things that he
gave me for day. They have these air things around the ankle and it
pushes air under an air pad that is also under the middle of the foot and
that keeps the heel off the floor when you walk by pushing air from the
ankle down into the air pocket under the foot. I love those too.They say
aircast air heel on them but I could find out from my doctor where to get
them since I go in Tuesday to him.. The phone number on there is
800-526-8785. They slip on the foot top and bottom, the heel is open so
it isn't touching a thing when you walk and are off the floor, they are
wonderful too. Well worth getting. Can you get that info to the lady in
the story right away?

Love,

Miss Molly

Re: My TTS/RSD story (Long!)

john n on 10/31/04 at 05:33 (162600)

That is great to hear. I am glad to see other people taking the more holistic approach to their ailments, you may also wanna add some alpha lapoic acid to your diet, seems to help also. good luck

Re: My TTS/RSD story (Long!)

CReece on 11/01/04 at 11:26 (162694)

Rekha - Hi - the rheumatologist diagnosed me with RSD, but when I stopped the ice and stretching - my redness disappeared, my foot became less sensitive and was better able to adjust to temp changes. I sure hope the block works for you!! Here's a great site about RSD if you haven't came across it yet. Some of the info is old, but it was a great resource for me when I thought I was facing RSD - It got me off the ice, etc. which led to an improvement of my particular symptoms.

http://www.rsdrx.com/
Best ~ CReece

Hi Kim - I take a Super B Complex with lots of different B vitamins, the B12 in it is 15 mcg a day. I really notice a difference in my nerve pain and 'activity' when I miss a dose. I truly hope the B12 helps you !

Janice, thank you so much for the info on the night splints! The sleep part is still very challenging for me, this sounds like it's exactly what I need. Send Ms Molly a big thanks for me too!

John, thanks for taking the time to mention ALA. I'm adding that to my list to research and add to my 'bag of tricks' as I continue to tackle this condition.

Warmly ~ CReece

Re: My TTS/RSD story (Long!)

CReece on 11/01/04 at 11:27 (162695)

Whoops, I posted this incorrectly! Let me try this again!

---
Rekha - Hi - the rheumatologist diagnosed me with RSD, but when I stopped the ice and stretching - my redness disappeared, my foot became less sensitive and was better able to adjust to temp changes. I sure hope the block works for you!! Here's a great site about RSD if you haven't came across it yet. Some of the info is old, but it was a great resource for me when I thought I was facing RSD - It got me off the ice, etc. which led to an improvement of my particular symptoms.

http://www.rsdrx.com/
Best ~ CReece

Hi Kim - I take a Super B Complex with lots of different B vitamins, the B12 in it is 15 mcg a day. I really notice a difference in my nerve pain and 'activity' when I miss a dose. I truly hope the B12 helps you !

Janice, thank you so much for the info on the night splints! The sleep part is still very challenging for me, this sounds like it's exactly what I need. Send Ms Molly a big thanks for me too!

John, thanks for taking the time to mention ALA. I'm adding that to my list to research and add to my 'bag of tricks' as I continue to tackle this condition.

Warmly ~ CReece

Re: My TTS/RSD story (Long!)

Brocha F. on 11/02/04 at 23:15 (162834)

I hate to be ignorant but what is RSD? I knw\ow what TTS is but not RSD.

-Brocha F.

Re: My TTS/RSD story (Long!)

Kim on 11/03/04 at 18:55 (162893)

CReese , Thanks for the info. Kim

Re: My TTS/RSD story (Long!)

Kim s on 3/10/08 at 00:33 (244343)

RSD IS also known as crps and that means complex regional pain syndrome it is a very nasty disease it is chronic pain. It is dibilatating it is just awful. you can look it up on the Internet. there a site for Grace great site. Paula Abdul has this in her legs. the site I gave explain that.This attacks the sympathetic nerves system so it is every thing you don't have to think about