Hello everyone,

I was just officially diagnosed with CRPS two days ago. It started about 9 weeks ago, when I was doing a HIIT video and stepped wrong. The pain came on slowly over the weekend and two days later, underneath my ankle was killing me. I went to the orthopedic walk in, and he diagnosed me with Peronneal tendinitis. He put me in a boot and said come back in 2 weeks. Came back and put me on crutches for two weeks... he then referred me to a colleague of his. He said "give it two more week, you should be fine." He referred me to an ankle specialist who referred me to a Physical Medicine Dr who officially diagnosed me. Wow, what a roller coaster. I guess the average is 5-10 Doctors for a diagnosis... I hit 4.

I am on my way to increasing the gabapentin to 1800 mg/day. Right now I'm at 600 mg. I am doing hot/cold foot baths, Physical Therapy, and foot massages. I will have a ganglian nerve block in the next few weeks. I have a few questions and I will continue to research, but wanted people's opinions.
1.) Is it normal for tendinitis to cause CRPS? Or is that odd?
2.) Does Gabapentin really cause weight gain, or does it depend on the person?
3.) I was told that narcotics wouldn't help this kind of pain, is that true? (Even though my Dr. prescribed some so help before the Neurontin kicks in).
4.) My foot is always cold, about 2-5 degrees colder than the other. He said that usually means that it's progressed further than the burning phase. Has anyone else heard that?
5.) What natural vitamins can I take that would help promote healing?

I'm so confused. The ankle specialist says that she won't do surgery on my peronneal tendons until this is under control. I'm so glad I have found this forum. I'm hoping it'll help me cope with this frustrating disease.

Thanks in advance. I look forward to hearing responses.
Jessica

hi Swanny,

I am so sorry you had to come and find us. It is very heartbreaking getting to that point. You will find good support here when you need to vent, ask questions or just get a virtual hug.

I would encourage you to look at the Budapest Criteria and see if you feel your diagnosis is a fit. CRPS is a spectrum and tricky to diagnose unless it is florid. Many of us have been through the "yes it is, no it isn't, yes it is" mill. Very tedious and frustrating. It is wonderful you have an early diagnosis and treatment plan. But I would encourage to keep looking for answers and not to give up on a solution or potential for healing. If there is an injury or pain contributor in your ankle that definitely needs to be addressed and not lumped in with CRPS and left as is. Addressing a pain contributor could affect your outcome.

Have you had any imaging? MRI? Ultrasound? The ankle is very complicated. It is easy to see a little swelling, feel the leg and make a diagnosis expecting the most frequently seen problem when something else is actually going on. Stay on top of your doctors. Make sure you have no stress fracture or ligament tear. A simple ankle sprain can cause CRPS, it can also cause swelling and cold temperature without CRPS.

I am not saying that you don't have CRPS. I don't think burning pain is standard for tendinitis and Lord knows any insult can set CRPS off. I just hate for anyone to go through this if there was anything that could be treated that might give a better chance at recovery and remission.

Take good care of yourself, be kind to your foot. Ignore the doomsday info out there. The majority of people, 80% according to some of the CRPS bigwigs, will improve over time. Get in the pool, ride a bike, keep up range of motion, avoid flare but keep yourself moving.

Gabapentin commonly causes weight gain and some pedal edema...but not for everyone. Vitamin C is your friend. Avoiding inflammatory and processed foods is helpful. Caffeine constricts circulation so no good there.
I have seen info about people starting out with swelling and heat and later moving into the limb being cold. However, in most of that literature the cold phase came later than 9 weeks.
Narcotics can activate glia, which are implicated in neuropathic pain. Better as a short term starter or when other options have failed to control pain.
Why would they be doing surgery? Did you rupture something? Is the tendon totally degenerated?Surgery on the anterior ankle can cause tendon bow stringing which may create another set of problems.

Hang in there and keep up the fight! Sending Healing Love, Littlepaw

Jessica,

First of all, Welcome, you have come to the right place! The people here are very knowledgeable and caring!!! I'm pretty new myself, and have learned most of what I know about it from here. I do know that you will get the temp difference with the burning, which to me is the most crazy. My arm will feel like it is on fire but feels like ice to someone else.

CRPS is a very emotionally straining issue to deal with, find a good support system, that is important! Again, this forum is a great place for that also

Sending healing love and
Dawn

Taking Vitamin C is a good idea. Mrs. D seems to be the local expert on vitamins and supplements, so you might read through her posts.

Welcome Jessica,
I have been on gabapentin (as much as 2700 per day) since January and have never gained any weight. As far as supplements go, I just saw a new CRPS specialist today who recommended taking Alpha-lipoic acid and Acetyl L-carnitine.
Missy

Wow, thank you for all of the information. I really appreciate it.

I have had an MRI and Xrays, here are the results, if you have any other ideas/suggestions, I'm open to hear them.
X-Ray
FINDINGS: No fracture, dislocation or acute osseous process of the hindfoot. Mild osteopenia.

MRI
FINDINGS: Tibiofibular, anterior talofibular, calcaneofibular and posterior talofibular ligaments are intact. Mild edema within the posterior tibiotalar component of the deltoid ligament which is likely within normal limits. Tibiospring and superomedial
calcaneonavicular ligaments appear intact.
Trace anterior compartment tenosynovitis. Fluid about the peroneal tendons consistent with tenosynovitis. Scattered tenosynovial fluid about the posterior compartment tendons which also can be seen with tenosynovitis. Achilles tendon is intact.
Small ankle and subtalar joint effusions. Tiny focus of full-thickness cartilage fissuring involving the tibial plafond posteriorly (series 8, image 11) where there is a small amount of subchondral bone marrow edema. Small retrocalcaneal bursal effusion.
Fat containing lesions within the medial plantar soft tissues about the hindfoot (series 5, image 34) may represent lipomas.
IMPRESSION: No evidence to suggest fracture. Multiple chronic findings as above, including peroneal tenosynovitis which can account for ankle pain.

The ankle specialist said that this CRPS would need to be addressed before surgery would be an option on the peroneal tendons, as the CRPS would affect the healing process.
I have done research on CRPS and I do believe it could be the diagnosis. I don't feel much of the burning, but the cold and color changes is definitely happening!

As much pain as I'm in, I am really trying to stay active. I have started walking again, and am excited about getting on my bike again.

Thank you all for your posts. I will look into taking more Vitamin C and Alpha Lapoic acid and Acetyl L Carnitine.

Jes

Hi,

That looks like a pretty positive report on your ankle. I am glad they did imaging for you. osteopenia can be age related or bone loss from not weightbearing as much. Bone loss can also come with CRPS. Effusions and bone marrow edema can cause a fair amount of pain and bone edema can take several weeks to resolve. I would ask if they think you need to do anything else about it. Sometimes a walking boot is necessary to keep strain off until that resolves. having it continue is no Bueno.

On your tenosynovitis, that is a better thing than have a lot of degeneration. Basically the tendon sheath is inflamed. It may be treatable outside of surgery. Not all foot/ankle docs do a lot of ultrasound guided injections but they are a possibility for treating tenosynovitis. I have a Physical Medicine and Rehabilitation doctor who has had really extensive training in ultrasound techniques. He does injections of steroid just to the tendon sheath. They are tricky as you don't want steroid in the tendon itself for chance of rupture. If you can find a qualified PM&R person who does these that may be something to consider before a surgery.

Please let us know how you are doing. I hope you have a great weekend. Sending hugs, Littlepaw

Hi Littlepaw,

I'm only 33, so the osteopenia shouldn't be age related.

I was in a boot for about 6 weeks and it wasn't getting any better. I think that's when they referred me to the ankle specialist. She poked and prodded and it wasn't only painful in the peroneal tendon, which is why I think they were diagnosing it as CRPS. Unfortunately, I do have a lot of the symptoms of CRPS, so I'm thinking the diagnosis is correct. It's nice to hear though that he doesn't think surgery is needed for my peroneals. Whew! I think recovery on those suckers is NOT fun.

I did have a cortisone shot after week 2, which did nothing for the pain. They have scheduled me for a ganglion shot on June 26th. Have you ever had one? Are they painful?

Thanks!
Jes

I have not had a lumbar block done so can't speak to that personally. People post varying degrees of discomfort. I am sure operator skill and individual response really drive that. I hope it brings you more relief.

Avoiding surgery when you can is always a good thing. hopefully your issues will get resolved way before that point. If your injection was not tendon sheath specific it may be worth another look before signing up for anything really invasive.

A lot of us have really benefited from being in the pool. It is a great way to keep up exercise and circulation without so much stress on the limb. That and the water is just a pleasant place to be. Gotta build in some fun and relaxation with all this recovery business!

take care and post after your block is done. Some people get really good results. I am sending warm wishes for you to be one of them.