Hi there!
I had a hamstring injury 7 months. It still feels weak and sore. I told my doctor my symptoms and he said I have RSD. But I don't know if I believe it (maybe it's denial or just an incorrect diagnosis.)

My symptoms:

• muscle weakness in hamstring and calf
• extreme soreness lasting for 1 -2 weeks. If I would move too much, it would turn to burning pain.
• not always in constant pain. I would be pain free sometimes or less noticeable pain, but not for long.
• able to sleep (so far thankfully))
• able to wear clothes(though i don't wear tight jeans on my leg) and shower
• ice provides relief (But i stopped using it because of fear this is RSD)
• cannot walk or run.
• no swelling
• right leg is colder than left leg
• my right foot has tingling sensations (new symptom)
• calf had throbbing pain last week but never happened before- only when I attempt to exercise this
  muscle
  

I'm seeing a neurologist and an orthopedic to possibly confirm diagnosis or find out if it's something else.

I know everyone is different, but most people on here describe being in severe pain and not being able to wear clothes sometimes. Maybe i'm in the early stages.? I thought I may possibly have a muscle inflammatory disease, myofascia or myalgia or something like that.

I've never screamed in pain. I've experienced awful pain. I have cried sometimes but I'm not sure if this qualifies as RSD.

All i know is that NSAIDS never worked for my pain.

Have you guys experienced similar symptoms? I know you're not doctors but does this sound like RSD to you?

Hi

As you clearly realise, it's pretty much impossible for anyone to tell you whether your diagnosis is correct or not. Not everyone has the same severity of symptoms with CRPS though. Whether you have acute or chronic CRPS isn't typically the determining factor for severity. It is possible for some/all of the symptoms to stay the same, improve or worsen over time - just to make it really difficult!

You don't say what type of doctor has already diagnosed you nor how they went about that diagnosis so its impossible to know whether their opinion is likely to be credible or not.

However, there are strict diagnostic criteria which have to be followed and all other possible causes of symptoms have to be excluded for CRPS to be legitimately diagnosed. You can find details of the latest version of these diagnostic criteria on the RSDSA website. It is a US organisation that raises awareness and provides information about the condition and, unlike so many other web sources, their info can be trusted in the main to be reasonably reliable and up to date.

Any specialist you see should be familiar with the International Association for the Study of Pain diagnostic criteria and should apply them, they shouldn't just say its CRPS because they don't really know what is wrong! All of the clinical signs and symptoms present in CRPS are also found in other conditions so it takes skill and knowledge to get a diagnosis correct, especially if the symptoms are not very obvious. Orthopaedic surgeons are typically not very good at recognising and diagnosing CRPS but pain management specialists and neurologists (with the relevant experience) are generally rather better at it.

I think you will find that the people who post here are posting precisely because they have more severe symptoms, people who have much milder symptoms are less likely to feel the need for any support. They will likely just be getting on with life and managing to get along without the need to reach out to other people who are in the same boat.

It makes sense proceed with your planned course of action and seek further opinions. Meantime, the best thing you can do is keep your leg moving, ensure you are working on your PT rehab activities especially including weight bearing activity and keep touching any painful or sensitive areas to avoid them becoming over-sensitive. Even if you are ultimately diagnosed with CRPS, it may fade away into remission if you just persevere with the PT and walking rehab. No doubt you will be back to let us know what the further opinions are when you get them.

Hi. Thank you for the reply.
A vascular doctor diagnosed after he tested me for Peripheral Artery Disease and a blood clot. I told him I had pain in my calf and cold/tingling feet.

I'm able to touch my leg but not use it.
When I walk on it , it just gets worse and hurts really really bad. I tried building up slowly but then the pain comes back more! I'm just so confused. I'm in a wheelchair now. I wasn't in a wheelchair for two months and here I am again. It's so difficult for me to deal with because I was a ballet dancer and a college student. All my friends are moving on and I'm just devastated. Hopefully it is something else or something curable because I don't think I can deal.

I still need a bone scan, nerve conduction test and MRI as well but my doctor is so sure I have this.

Ave you tried warm water PT? Regardless if it's RSD, if you're unable to manage putting weight on your leg, getting in a pool might do you a world of good.

Make sure you don't use any ice, just in case...

It's always impossible for us to know how skilled your doctor is at diagnosing CRPS but its something that can be very difficult to diagnose. Its important to get a second opinion from the other doctors you are being referred to along with the various tests they are proposing to do. It may still turn out to be something else but if not then at least you know. It's good that this is all in hand for you.

If it is CRPS then the absolute worst thing you can do is use the wheelchair. Even though it hurts much, much more to walk on it, you need to grit your teeth, be tough and keep doing it. Not using your leg will only make things much worse in the long run and ultimately it is likely to make the pain levels much worse too. Building it up slowly is fine but be aware that it isn't likely to make any great difference to the amount of pain you feel, at least not in the short term. It will probably still be significant. Even if you are not able to cope with walking big distances, you need to keep walking on it, even if its for shorter periods, several times a day in your home, that will make a huge difference. I don't know what PT you are doing but, again, you need a rapid referral to a good PT who has experience of the condition and expect to be working with that person for some time. If it is CRPS, the pain you are feeling isnt making an injury worse nor doing any physical damage and is something you have to learn not to fear. Easy words, but extremely hard to do as we all know from our personal experiences.

As a dancer, you will be no stranger to hard work and toughing it out through physical discomfort I'm sure. All of that determination and discipline will be invaluable to you in getting through the next phase of your life. CRPS is often a condition that very active and sporty people get so you are in good company. It is exceptionally difficult to lose an active lifestyle and feel so limited but there are people who eventually obtain a remission from their symptoms, often with intensive and tough PT and lots of determination amongst other coping strategies. It can take some time but it is possible.

If your doctor is sure it is CRPS you need to seek a referral to a good pain management specialist, preferrably with minimal delay, who can start to address your particular symptoms, probably with various medications and other interventions. I would also urge you to learn all about the condition from reputable sources like the RSDSA.org website. You have a hard journey ahead and you will need to be your own advocate for your treatment. Knowledge truly is power when you have this condition - it allows you to sort the useless doctors and PTs from the decent ones, gives you the ammunition to fight to try all the different treatments and medications that may help and gives you an idea of what different options may be out there in the future.

I was very active and sporty so I know how desperate it is to be in agonising pain, feel uncertain about the future and able to do very little. If you are starting to feel depressed about things, please don't suffer in silence, its totally normal and understandable. It is something that most of us have had to deal with along with our CRPS. You may find that getting psychological support is really helpful to you as you go through this diagnosis and treatment process.

I wish you well and hope that you get lots of useful help on here.

Abbey,

I'm going to tease you a bit......

You are doubting that your issues might be RSD because you are not currently in the severe pain that you have heard affects most RSD'ers.

You are also a young, previously VERY active and limber, woman who is now wheelchair dependent because you cannot tolerate the pain that comes with consistent weight bearing on your leg.

Helllllooooo !!!!!!!!!!!!

If you tried to live life as before, you WOULD be dealing with more pain, right ? De Nile is a river in Egypt !

Okay, end of teasing. I have to try to make light of the RSD monster and the way it affects us all or I'd go bonkers.

I'd be happy for you if you were to get lucky and eventually find out that your symptoms/issues are NOT RSD, but instead an easily fixable problem.

In the meantime, if you can start preparing for the worst and learning more about RSD management, you'll be better able to collaberate with your medical team and participate in a plan to maximize your functioning and comfort level. If you truely cannot bear weight on that leg, you'll need to be clear with your docs whether the issue is that your leg gives out and cannot support your weight or if it is pain that is limiting your ability to bear weight on it. If you are limited by pain, it is so important to ask/beg/plead for help with managing your pain so that you can attain full ROM and basic functioning. Gentle PT can start without full weight bearing and slowly advance. Maybe it's not a reasonable goal for you to 'lose the wheelchair' totally, but perhaps it could be a goal to use techniques (meds, heat, massage if you can tolerate it) to help you manage the pain so you could advance to weight bearing during PT sessions, or for short periods during the day......and use the wheelchair at other times to help manage your pain. It is critical to try to attain ROM and basic functioning. Be aware that more advanced PT, such as weight training, CAN do more harm than good in RSD'ers.

As crappy as a dx of RSD is.......that you got the dx this early in the process is AWESOME ! Appropriate medical interventions NOW might save you a lot of pain and disability down the road. If your docs are thinking about repeated nerve blocks or Ketamine treatments (to name a few) at this stage, you have a shot at remission.

Glad you found us here at NT !

Just wanted to add one thing, you can have RSD and have an underlying structural issue. You can also have RSD AND and underlying structural issue.

Hi Abbey, I sincerely hope you do not have RSD. It's good you are seeing other Drs. and getting more testing done. As hard as it is, I agree with others the importance of staying mobile and getting pt and keeping range of motion. For me a neuclear bone test confirmed my Drs. RSD diagnosis among other tests. My original diagnosis was at least 4 years after my RSD by an orthopedic dr. across the country. then confirmed by 3 neurologists and another orthopedic dr. that oversaw my PT. Early diagnosis and treatment give you the best shot at remission if you do have RSD-that is on your side. Let us know what your future appointments reveal-If you do have RSD, you will find much comfort and good information here. Hope the best for you. Loretta

Thanks guys for all your advice and support! I think I do have RSD and underlying problem. lol so sad.

I don't know if I'm considered early diagnosis since now I'm in the beginning of my 8th month with this pain except before it was less severe but **positivity**! (hopefully I do get better?)

When I walk on my leg, it feels like it gives out or it doesn't know how to function. I'm walking very slowly now.

I went to physical therapy last week. ( I was attending physical therapy for my hamstring injury) My physical therapist tried the Electronic Muscle Stimulation machine and I didn't feel any pressure or electric shocks on my calf. She told me that's a sign of nerve damage- loss of sensation. Is that considered advanced RSD?
:/

This Thursday I have an appointment with a orthopedic doctor. Hopefully he's familiar with RSD.
This Friday I'm seeing a neurologist.

I will definitely keep you guys updated.

It's entirely possible that there is some damage, inflammation or scar tissue that is impinging, irritating or compressing a nerve and that is responsible for the symptoms further down in your calf. It may not be that but there are lots of things that could be going on some pretty minor and others more serious. You didn't say what your original hamstring injury was not what the treatment was and that may make a difference to what could be going on inside your thigh.

It's also possible that the feeling you have of your leg wanting to give way or not responding is due to the lengthy period of limited use or disuse. People are often amazed by how useless their limbs are after even relatively short periods of immobilisation, injury or incorrect use. It can take a long time to recover normal function and it can be a real effort to consciously re-learn functions or movement patterns that you are used to having without thinking about them. Limps in particular can become very habit forming even long after there is nothing wrong with a leg.

There isn't a concept of advanced CRPS nowadays. It's generally divided into acute and chronic but the 'old' concept of different stages where the severity increased with length of time has been largely discredited by increased research. The clinical signs and symptoms and the severity don't necessarily work on a linear pattern so the experienced doctors have long since abandoned the concept of stages of CRPS. In fact, any doctor who does use that concept should be treated with some caution because it would tend to suggest that he or she isn't up to date with the research and latest thinking on the condition.

I am not for a second trying to minimise your problems or suggest you don't have CRPS - I am just trying to highlight that there could be other reasons for some of the problems which might not be so bad so don't get too depressed about it all just yet. Even with CRPS, lack of use of an affected limb can contribute to the symptoms someone has rather than all of those symptoms being caused directly by the CRPS itself.

Hang in there and see what the other doctors have to say. Just one word of caution which is that orthopaedic doctors are not always the best at identifying CRPS - they have usually long since discharged patients and therefore don't see it often. They can also be a bit too happy to find surgical solutions for everything which is exactly what a CRPS patient doesn't need. Don't get panicked into making a rapid decision about anything.