Diagnosed CRPS help!!!!
 

I am a 43 yr old female. I had surgery for my cuboid bone that was not healing from a stress fracture and it got worst. Surgery 6-24-2015. I am a little over 2 months post op. No pins or screws just smoothed out bone and removed bone fragments broken off from bone. I have been going to ortho for post op every 2-3 weeks. Right after surgery for a while I suffered with a burning sensation if anything touched my foot. That is not as bad. I still can not walk long distances without crutches. Ortho sent me to pain dr on Friday. He diagnosed me CRPS. All he did was look and touch my foot (ouch) and my symptoms are. Numbness especially along outside of right foot, pins and needles when touched or when standing or walking. Swell throughout day and bad at night. Very stiff and sensitive to touch ( not severe like pain when sheets touch). Foot feels cold at times but no discoloration. He is doing a nerve block next week and put me on morphine and Lyrica. Does this all sound like a correct diagnosis of CRPS. To me from what I have read it doesn't. All information is welcomed!!!

Hi Julie,

I am so sorry you had to come and find us but you will find good support here. I hope that the meds and nerve block give you some relief. Foot surgery is a challenge to recover from even without CRPS. Whether that is what you have or not I can't say. It does sound suspicious but then again, foot surgery is a bear itself and often takes longer than the docs think it will. You aren't that far out from surgery. If it is CRPS there is hope, the majority of people, 80% according to Cleveland Clinic, recover over time. It takes time and dedication to your rehab and determination to keep trying things until you find what works for you. Compounded topicals or lidocaine may help with the cutaneous pain. Keeping your foot elevated since it's post-op is still important at 8 weeks out. Watch for swelling at the end of the day and maybe look at epsom salt soaks in cool water for that. It's great the burning pain is reducing and you at able to walk some without crutches.

Many of us benefit from the pool. After 3 foot surgeries, the last started the CRPS, I pretty much lived in there and it is where I began to walk again. Going 2+ miles on land now! Keep that foot moving with gentle range of motion and swishing around in the pool even on days you can't do anything else. You WILL make improvements. Ignore the doomsday info on the internet. It is not accurate and wont help your recovery.

I always recommend Dr. Pradeep Chopra's video "CRPS Diagnosis and Management". at 2 hours long it has loads of practical tips on therapies, treatment and supplements. He is highly regarded and a reliable source of info.
www.youtube.com/watch?v=s3LKhOZ8mAM

Be kind to yourself and come when you have questions, to share, vent or get a virtual hug.
Sending healing love,
:hug:

Thanks so much for the information. I appreciate it

The signs and symptoms you have described don't meet the criteria for a diagnosis of CRPS. Its a difficult condition to correctly diagnose and it should have taken a lot longer with a far more detailed history taken and more detailed examination done to make such a positive CRPS diagnosis, especially since none of your signs and symptoms are particularly remarkable and you are barely over the surgery itself.

You are only 2 months out from your surgery. That is nothing at all. Pain at this stage wouldn't technically even be diagnosed as chronic pain. All or virtually all of the things you are experiencing could be entirely explained by the normal post-operative healing process or even by a delayed post-operative healing process. Even a delayed healing process doesn't necessarily mean anything is wrong - some people are naturally slower to heal and fully recover than others. Sometimes the body will take longer than expected to settle down after the disruption from surgery. In those circumstances, a diagnosis of CRPS is not correct as there must be no other possible reason which could account for the signs and symptoms you have. One issue with CRPS is that all of the individual signs and symptoms it produces are also generated by many other conditions or processes in the body. One of the issues with all of the awareness raising that has gone on even in the time I have had the condition (8 years) is that whilst genuine cases are still being missed, there seems to be an increase in incorrect diagnoses being made.

A cynic might ask whether the diagnosing doctor realises that he can perform additional procedures on you and rake in easy extra cash. If he has diagnosed a post-operative chronic 'condition' with a name this gives him an insurance code to allocate costs to whilst generating himself some nice easy profits. It will be virtually impossible for anyone to ever challenge him because the signs and symptoms of CRPS typically change over time.

You may well want to take the medication as there is no point in suffering neuropathic type pain unnecessarily and it is thought that poor post-operative pain control can contributes to the existence of chronic pain. Do your research on the block and consider the risks v rewards of the block - if nothing goes wrong you will be fine in a few days but there are always risks, however small, with these procedures. The very best thing you can do is to be as normally active as possible - subject to your physio's instructions of course but the worst thing you can do is not to use a limb or to guard it because it is painful. Crack on and do the physio and then get straight back to plenty of normal activity to minimise the risks of future problems.

According to the Budapest Criteria you need 3 of the 4 main Symptoms for a diagnosis of CRPS

**

If you don't make progress in the coming weeks, be sure they do adequate work up to rule out any surgical mishaps. I wonder about the numbness you describe. Could that be CRPS, nerves pressed on by post op swelling or a nerve that got nicked or smooshed by scar tissue etc.? it is important to find and address any pain contributors so you can heal whether this is CRPS or ticked off foot. Morphine at 8 weeks out sounds heavy to me for any remotely typical healing spectrum. Obviously your foot hurts like hell for whatever reason.

I am very thankful for all of yall responses. My ortho sent me to pain management because he says I should not be in this much pain eight weeks out following this surgery. Also I forgot to mention he said that it took him twice as long to do the surgery because a nerve was in the way. He was hoping that he did not hurt the nerve in any way but he thinks he did that's why he sent me to have a nerve block done.

Poop. I am sorry to hear it. I sadly know too much about nerve injury from ortho procedures.

Nerves can handle being stretched and tugged on during procedures. If he just had to gently move it out of the way the nerve should tolerate that but maybe be ticked off. What nerves can't handle is being scarred down, cut/torn or worse yet, partially cut/torn. Mine partially tore from a retractor which is pretty extreme.

If you are in or near a major metropolitan area, and I mean MAJOR, Austin at 850k people didn't have the specialists for what I am proposing and I had to go to Houston. If you don't get better and your doc thinks he damaged the nerve it is possible to get a peripheral nerve ultrasound by a Physical Medicine and rehab specialist with ultrasound certifications. These guys can visualize nerves that can't be seen on MRI, Especially something major like you are probably talking about (Sural or superficial peroneal depending on where they went in). They can look at it and tell if it was transected, has a neuroma or is just scarred down. They can treat scarring with a hydrodissection.

hopefully it won't come to this and you will get all better soon. But if you don't , this is a little known imaging and potential treatment option to address nerve injury.
:hug:

Good morning. UPDATE
 

I went to a different pain dr yesterday for a second opinion. This was such an extreme difference from the last dr. This dr was in the room with me explaining and showing me things that the other dr didn't. By the way the first dr walked in looked at my foot and said you have CRPS "I'm not going to explain it just google it". I was like wow really? After thinking about it if I did let him do the nerve block would he have to google it? Needless to say I fired him
So the new dr explained and showed me that I have all four symptoms. With one of them being minor which is good. But I do have discoloration, temperature difference and I forgot the last one lol. The one where it is painful to touch is only in a small part of my foot but extremely painful to walk.
He gave me a choice to try intense physical therapy for four weeks or nerve block. I chose the physical therapy and we will see what happens there. He wants me to move my foot more and walk more without crutches. He also said that the liryca the other dr gave me was not enough so he upped that. He then gave me quick release morphine to take as needed along with the extended release morphine twice daily.
The the nice person who asked about me living in a rural area. I am in Louisiana in between New Orleans and Baton Rouge so I am seeing a dr in Baton Rouge
Thanks again everyone for all of your input. I look forward to hearing from yall more. I will let yall know how pt goes. My appointment is tomorrow

Hi Juliek~I'm a new member too and just wanted to say hello. Glad you found a pm doc that you like. I have an appt. with a new one on 9/8. My first one seemed to only do procedures (nerve blocks, did 3; SCS no way right now.) I want someone that will discuss other options. I am in PT since June (pool and land) and I wish you as much success with it as I have had. Not easy, but I'm so much stronger now. Good luck!

Yeah for the new doctor. I am so glad you exercised your right to choose a better provider. I think your plan is a sound one. If after the PT you still have a lot of "ick" where that burning sensation was, you might consider a local block with steroid before going for the spinal nerve blocks. Sometimes peripheral treatment does the trick.

I started pt yesterday and it was rough but I did it. Today I was very soar so I just laid around. I also am going back to work tomorrow night. So please pray I survive.

1 month diagnosed CRPS ll
 

Hello everyone. I am new to all of this and I am so confused about so much and worried about a lot too. I had surgery on June 24 so I'm 3 months post op. I started right after surgery with nerve pain. My ortho and 2 pm Drs have diagnosed me. My symptoms are burning pain in foot with discoloration and temperature different from opposite foot. I also have pain when walking so I use a knee scooter for walking long distances. The burning pain is not constant but it does happen a lot. This past week I started feeling the pins and needles going up my leg to my calf. I'm hoping it's not spreading. I do swell a lot especially when I'm moving a lot or on my feet.
I am working now 3 days a week in a light duty position but eventually I have to be able to stand 8 hours a day. I'm worried about getting to this goal. I will see my Drs this week and discuss nerve blocks. I'm already in physical therapy and I am planning on to continue it.
My meds that I'm on for CRPS is gabapantin 300mg 3xs day, morphine sulphate er 2xs a day. Morphine sulfate 15mg ir as needed. I am also on other meds too due to having major depressive disorder and severe anxiety. I also have insomnia. So I take a number of meds every day. I was on Lyrica but after 3 weeks I started to get sores in my mouth so I went to gabapantin which makes me sleepy.
Here are my questions
Do you think I will be able to stand for long periods of time as to return to work?
I have a lot of short term memory is that meds or CRPS? I couldn't remember talking to a friend on the phone. I also had forgotten what my left and right was while driving.
What is the recovery time of the nerve block and any other info on it?
I'm sure I have many more questions but I thank yall in advance.

Hi Julie,

I think your post might get lost in here with pictures and am thinking you meant for it to go out generally. I let a moderator know that it may need to be moved so you get enough exposure for meaningful answers.

It is very hard not having a timeline of when you will get better, when you will be able to stand, when you will have less pain. My best advice is to take it day by day. You will make progress but it may not be at the rate your doctors or therapists think it should be and certainly won't be at the rate you want it. Which was yesterday right?

Progress does come, sometimes in tiny baby steps. Keep things gentle on your system. If you swell a lot then having a dependent limb that you stand on 8 hours is Not realistic until things get further along and more settled. Definitely Get in the pool if you can, ask for aquatherapy. It is great for reducing swelling and improving circulation.

I am glad to hear you are in PT, that's a great start. Do all you can without flaring overly and keep up the good work! I can't answer the nerve block question directly but from what I know relief is pretty quick from the anesthetic and then another boost sometimes a bit later as the steroid kicks in. I don't know how long recovery is. Short term memory issues are common, especially in the beginning and are part of your brain being overloaded with nervous system activity. Meds can contribute too. Go easy on yourself and try to note if it is worse after any meds in particular.

hang in there Julie, we're rooting for you and hope you find relief soon, :hug:

I would second what little paw said one foot surgery. I have 2 and they have taken me double and triple the time it would take to heal. My first one had screw and staple in second was to take it out. After first I had many of the cross symptoms but turned out I didn't have it just my body's reaction to healing.

Maybe ask for nerve conduct studies emg to check for nerve damage. Good luck in your search for answers.

They nerve blocks do not take long to get over. Mine varied with each shot, but basically one to three days of being fairly sore at the injection site. I am asssuming from the description of your injury that it will be lumbar sympathetic blocks, the sorness is on the on the same side as the CRPS foot in the lower back. Not a huge deal compared to the CRPS.
~mac

Hi Julie,

Like you, my CRPS developed within the context of foot surgery as well. Your case sounds very very familiar to me. If I may, I'd like to encourage you to find a good Physical Therapist. At the early stages, which you are now in with CRPS, if you can hit this disease hard early on, you have a better chance of kicking it into remission. Since there is no cure for CRPS, that is he best any of us can hope for.

Now, here is the kicker, chances are, your Physical Therapist has never heard of CRPS. None of the many that I have worked with over the years knew anything about it prior to my walking into their office. So, they are going to need to be educated. My PT found what she needed to treat me, when I was first diagnosed, so I know the information that they need is out there. So after you find a good Pt, tell her / him to look for information among their sources for knowledge on how to treat CRPS. If they look, they will find it. I know mine did.

Here are some things that might be of help to you.

1. An efficient Pain Management Doctor and a good Physical Therapist
2. Proper Medication to help at least a little bit with the pain.
3. Water therapy
4. Mirror Therapy
4. Flash Cards for retraining the brain with different hand positions for you to identify. (Sounds easy, but is extremely difficult for CRPS patients)
4. Music Therapy
5. Chiropractors are beneficial to some (though it didn't help me)
6. Spinal Cord Stimulator/ and external stimulators
7. Spinal Nerve Blocks
8. And a Good healthy diet (This is essential IMO, since CRPS symptoms are tamed a bit by a leafy vegetable type of diet... Again In My Opinion

And one last thing. IMO-Everyone who has CRPS responds differently to different types of treatments. What works for one, doesn't work for everyone. And please remember, Your best chance of beating CRPS is to hit it early and hit it hard. There is no cure, but remission is possible, and your best chance for it is early on. I wish you well.

Memory loss is part of this disease, and being on the type of meds that most of us are on does not help either. Since having memory loss like we have is part of the disease and is not normally a part of who we are, it does take some getting used to it. I hate that it is a part of my life, and still struggle to accept it. Standing is tough for CRPS patients, especially if our CRPS is in the lower limbs. Also, this disease zaps energy and endurance. I know, I tire easily. But hopefully your Physical Therapist can help you with your ability to stand. Please let them know of your concern in that area. So hang in there. All of us are in this thing together. That is why this group is so helpful. We all understand our struggles with this disease and provide one another with a safe place to land.

Julie,

Standing for long periods on my job worsened my symptoms to the point I could barely walk, although at that time I was not diagnosed nor treated for CRPS. Long periods of toughing it out are not beneficial.

What has helped me gain strength to be able to stand for short periods of time is PT and pool walking in a warm pool. The "warm" part is important to success. I found out I freeze up in more than one way if the water is less than 84 degrees. I lost most of yesterday, because I tried to deal with colder water in the morning.

I also know CRPS has made me 10x as anxious as I was before. Even when I am resting/relaxing I am a tight ball of nerves. I swear I can feel myself vibrating.

Hi Julie,

As all the others have been saying, keep things moving and keep with the PT. Everyone here has been giving great advice and getting into a pool is one of those pieces of advice that I too am seeking out. Foot and ankle surgeries are very difficult to recover from and even harder when dealing with CRPS. My first surgery, no CRPS involved at that time, it took 8 months of PT before I was able to work a full 8 hour shift, and I still found that I had to sit every once in a while. If you want to be able to do it bad enough, than you will be able to do it.

Memory issues can also be a problem with CRPS. Taking morphine can cause memory problems as well. I find that playing simple memory games helps with keeping my mind somewhat sharp. Even things as simple as solitaire can help a little.

Nerve blocks are one of the things that I have been asking others about as well so I can't really tell you much about them. Since you had surgery in June, you may benefit from them.

You mentioned that you were having pins and needles sensation going into your calf, hoping that it wasn't spreading. I wouldn't worry too much about that. CRPS does occasionally do what is know as walking. It doesn't hurt to bring it up with your doctor though, just in case.

Fight hard. Like -Spike- said, Your still early on into this and you still have a good chance of putting this into remission.

Thank all of yall for every bit of advice and pointers. I am trying everything I can. I was in pt today and I actually cried from him touching my foot. I've never cried before today in pt I am becoming more sensitive to touch. Is this normal? Will this get worse? He said that I am getting worse. I go to the dr on Thursday.
I also am curious of what type a dosage of pain meds everyone is on. I'm on morphine 15 mg er 2xs a day and 15 mg ir as needed.

Ouch! Have you tried anything topical? You can order 4% lidocaine cream from Amazon. Maybe it would help to apply it before PT or fabric contact. I hope there is some insight at your upcoming visit.

I currently take 10mg nortriptyline for nerve type pain. It doesn't kill it but it does make it manageable. I tried getting off it and really noticed! That lasted about a week before I gave up and went back on.I wouldn't have tried but My neuro was being fussy about my ketamine infusions (of which he does not approve) and thought I should give up the Nortriptyline. Hmmm, maybe he is trying to get rid of me. I think I challenge him too much. :cool:

The strongest thing I took was tramadol. I just personally don't do well on opiates and their record for helping neuropathic pain is not great anyway.

I hope you find relief soon. Sending hugs, :hug:

UGH! If it were me, I'd ask your PT not to touch the foot! It sounds to me like he has never dealt with a CRPS patient before. I'd also ask him how many other patients with CRPS he has worked with before. I will bet that you are his first one. Physical therapy can take place without him touching you. CRPS patients don't generally respond well to others touching or grabbing their Symptomatic Limbs.

Therefore to answer your question, yes, it is very common to grow more and more sensitive to the touch. It is part of the disease In My Opinion.

As -Spike- said, your PT shouldn't have any reason to be touching your foot. The only reason is if they are familiar with CRPS/RSD and are careful about doing gentle massage techniques, watching your response as they perform them so they know when and where they can not touch.

As for medication, I am taking the standard gabapentin that many of us take, 600 mg 3 times a day which is still a relatively low dose for us, 50 mg amitriptyline at night, which is similar to what Littlepaw is taking, and hydrocodone 10/325 as needed. The one that I think has done the most for me is the amitriptyline. I have heard many others talk about low dose neltrexone as well but I read somewhere that the system needs to be completely clear of narcotics which includes morphine and hydrocodone.

Since I am still fairly new at this, I am interested in what others have to say as well.

Thanks again yall. I did ask my pt about his experience with CRPS. He said he has had a couple but I'm starting to wander. But I like him and he's conveniently located. But I think yall are right about finding a new pt. I am also on gabapantin 300 mg 3xs a day

There is a very simple way to tell what type of knowledge and experience any Physical Therapist has with treating CRPS patients. All one has to do is ask her / him the very simple question, "What is the number one thing that you tell all of your CRPS patients to do when they ramp up badly in pain from CRPS?"

Those that have an in depth understanding of the disease and how to treat it with Physical therapy would more than likely (In My Opinion) answer that question by saying, "I would tell them to immediately begin to desensitize the area." IMO that Physical Therapist knows his / or her trade in regard to helping CRPS patients. That is the physical therapist that I would recommend CRPS patients to seek out! That person knows their business and how to help people like us IMO.