symptoms?
 

Hi all. I'm new and haven't officially been diagnosed with rsd though my dr is really leaning towards it. I have never met anyone else with it and while I can look online or talk to my dr and get a vague list of symptoms, I was hoping to hear from others diagnosed. I feel like my main symptom is weird and it makes me feel crazy to try and explain it.
My main issue for the past 2 years is knee sensitivity in my right knee. I can touch it and it feels fine but to rest anything on it like a book or having any fabric, even a sheet over it is miserable. It feels like a lot of pressure with occasional burning or stinging sensations. Anyone else had this?

A link easy to follow and understand rsd
 

Sorry for not welcoming you, i missed that part.
It's hard to tell when some conditions can be similar and the symptoms too, neuralgia or fibromyalgia are similar , we all can tel you but we might be wrong assuming you have rsd and until you diagnosis is not official is hard to give an specific recommendations .I will paste a posting I found recently but was the easy way to understand rsd ,hope and help you.
This was a,posting from two years ago ,but considering we had many new members I think so really important to review again ,hope helps to our new bothers and sister sharing same concerns and pain. A nice link,copy the link and pasted on the cursor,has plenty of information ,treatments, medications, therapies all we need to know to deal with rsd in a better and more educate way, education will be the key with those doctors who ignore our concerns ,please review it and good luck,wit love Jesika .

http://www.rsdfoundation.org/en/ en_clinical_practice_guidelines.html

Ps copy al the link otherwise only half will open ,is very detail and easy to follow,good luck and hope you get soon a right idea and diagnosis of what you have , wish you best,from Jeisika .

Welcome and sorry you are having such issues. I hope you find help here and that your docs can support you as best they can.

Hard to tell based on your description if it is RSD or not, but it may help to tell us more about your symptoms (even though we are doctors or diagnosticians) we may be able to say "these are common or potentially common in many people with RSD.." etc.

and yes many people with RSD have a lot of sensitivity to the touch, fabric, even wind (fans or a breeze), sheets, etc. Sensitivity goes hand in hand with RSD for many people.

Did you have surgery or an accident and hurt yourself and it is not healing or it is getting worse? Do you recall when this started getting bad or worse? For me RSD pain is like nothing else in the world or I have ever felt, it is distinct to me, and I have many other serious pain issues but none feel like RSD.

Best to you, hope we can be of a support

Basically at the time I started having trouble I was running alot and doing bootcamp. Whenever I would do squats or bend my knee alot I felt like my knee would catch, then pop, then I could go down the rest of the way. I took some time off from working out and felt a bit better, but shortly after is when the sensitivity began and it has gotten worse as time has gone on.
So one of my main questions is does anyone have sensitivity to certain types of stimulus but not others? It seems odd to me that I can touch my knee, even lightly but I cannot have fabric on it. And it feels mostly like pressure like I have a large brick sitting on my knee when fabric is on it.
I've seen 6-7 different doctors and none could figure it out until this last one started suggesting rsd.

Yes ,rsd work for sure that way, even the blanket,fan to high, your own clothing make your skin to flare up with burning pain. Is rough to understand and live like this way every day, many dr don't have an idea about rsd/ crps mention both names ,I once mentioned one and dr didn't know but I mention after both names and he rapidly was suggesting I was suffering from chronic pain and recommended certain meds,I was see him because he is my PCP but dint manage my rsd case but coincidently recommended same meds to star ,gabapentin, Clonazepam and baclofen ,one for nerve pain which reduce eventually that burning feeling but the drug itself has it issues ,make you at the beginning feel like a zombie ,for real, the second is for anxiety , and the last for muscle spasm I was already in all,of them.
I hope soon you get the diagnose official event though is something we don't want but better to know and learn what to do,.
Knee pain is seriously one of the most awful pain ,during the nite my get so stiff when I try to move they hurt as hell and I need to warm up the skin with either covering for few minutes or putting my hands on tap not rubbing just holding it and will warm up. There are some warming pads you use to stick then not in your skin but in part of your clothes by the area with the most pain and relief can be gain, ice is a big no no with rsd so be careful with ice.
I hope you get some relief and maybe one thing I recommended will help you I really hope, and have a nice week with less pain,with loving care Jesika .:grouphug:

Hi

Sorry there is no clear cut answer but I think RSD has many similar patterns. Now I can only speak for me, but with my RSD, there is no way I can do much of anything that does not cause huge pain in all ways. When I first contract RSD it is much worse than 10 years later, but at initial injury and up to many years, I have inhumane pain upon anything. It sets into the muscles, joints, bones, nerves, skin etc. Catch and pop and pressure could be anything. I think people with RSD (often, not always) tend to use words like this to describe their pain, or I sure have

- burning, severe
- bone crushing
- feels like acid is pouring on them
- crushing
- spasms
- excruciating
- extreme sensitive to touch, of any kind...often not always....
- I have used terms like " feel like truck is running over the arm, leg"
- stabbing pain

Not sure if this helps and don't want to speak to others, but with my RSD I could not do anything without severe pain. It is not as bad as it was, but it is always bad and extremely painful....so....

I hope this helps...

Link from the National Institutes of Health
http://www.ninds.nih.gov/disorders/r..._dystrophy.htm
I never experienced the extreme sensitivity to touch like some others have. One of the commonalities is some type of vascular symptom such as swelling, temperature dysfunction, color changes.
Without those you may not have CRPS. Read up on the links I and others have provided and then have a conversation with a good doctor.

So I have spoken to two friends who are both chiropractors and based on my symptoms that they've seen over the past 2 years, they are agreeing with my doctor about the likely diagnosis of RSD. I'm going to have nerve blocks done in my knee tomorrow then I guess we'll see how that effects it. Anyone gotten any relief from nerve blocks?

Hi

I would be careful about where you go and who you see for nerve blocks. Make sure you find a reputable place/doctors so they are done correctly. Nerve blocks are performed in areas of the body that block nerves / pain related to the RSD area but not done into the affected area itself. Some people do well with blocks and get a lot of relief, some people get some relief, some people get no relief. All depends. I sure hope you get good care and relief. Fingers crossed. Here is some info for you!! Good luck.

http://www.rsdhope.org/can-there-be-...h-a-block.html

http://www.hopkinsmedicine.org/healt...r_pain_135,54/

I agree with Burnbabyburn , you don't want to get worse and so far if had known for few years now, you should never get injections on your affected rsd areas,is kind of risky,think about it and very well.
Also another site where you can get ideas and actual facts informations about rsd as well as those just been provide to you,also consider rsdsa.org and go to treatments and you will see a lots informations as well, fingers cross and wish you the best for sure,with love Jesika .:grouphug:

I had the block done and only saw the articles after it. It makes sense not to do the block in my knee, but it's too late now. And I do feel like my (possible) RSD is worse since having done it friday. He told me to basically incite pain. For the first 3-5 hours and see how it felt. So while I didn't go crazy, I did wear a pair of jeans for a bit and laid with the blankets over my knee and it seemed ok. But it was hard to tell because my knee already felt sore from the injections and had bandaids all over it. However by that evening I was feeling the cinder block on my knee (best way for me to describe my pain) and now 3 days later I feel like someone came and sat on the cinder block. Would it be normal for diagnostic purposes for the block to only last a half a day?? And what kind of doctor would be good to try next?

Find a reputable pain management specialist - a medical doctor board certified in anesthesiology and pain management. You may also consider consulting a neurologist and a physical therapist. If you do actually have CRPS, you don't want to fool around with clinicians who don't understand CRPS. Also, read the links we have provided you. It is vital to be well educated when you go to talk with these docs.

Sorry you are having issues. I hope you get a diagnosis soon and on the right treatment plan. :hug:

My main symptom is also sensitivity as well as severe pain. I am unable to touch my left leg without getting really bad pain. For nearly 2 years I was totally unable to wear any shoes or socks. The sensitivity gradually reduced (although it isn't all gone) by desensitising my food. Sounds strange put I stroked it with feathers and soft objects. It was part of my PT sessions but I also had to do it at home. It was TORTURE but I'm now unable to just about tolerate footwear. Desensitisation may be something you want to look into whilst awaiting a diagnosis.

Other symptoms for me include colour changes (affected limbs go blue, red etc), swelling, excess sweating in affected limbs, tremors and muscle spasms and also increase hair and nail growth on affected limbs. I also suffer from dystonia which can be a symptom of RSD - my leg rotates to the side and stays like that permanently.

Keep pushing at your doctors for a diagnosis. I know its hard but the sooner you are diagnosed the better and if it is RSD, the quicker its diagnosed the more chance you have of going into remission.

Also, try and keep mobile as much as possible. I KNOW its hard when in so much pain but it is important. My doc always told me 'use it or lose it'. Build up to what you can tolerate. There is a fine line between doing too much and too little.

Let us know how you get on. If you have any questions, feel free to ask me.:hug:

Just seen that you have also had the nerve block in the affected limb. I had a block in my affected leg and couldn't walk after it. All of my coordination had gone. It took me over a year to learn to walk again. Like yourself, I only read the article saying never to inject into an RSD limb after the procedure (I was only 12 at the time so didn't research RSD much then).

Something you could look into is the epidural. I had a ketamine epidural and it did decrease the pain somewhat, although it did only last a few hours. From that though my doctors determined that oral ketamine might work so I am now taking that - it only decreases the pain somewhat and is no where near as affective as the epidural.

Of course, everyone is different and what works for one person wont work for another.

I hope you find relief soon.

thanks for sharing! lottie thanks for your post about symptoms too. sounds like not every symptom necessarily occurs with everyone with rsd?
also, seems like different drs have different views on rsd... poorly understood condition??

hope you find good drs who can help you asbandr!

Thank you everyone for all of the input. I'm still uncertain as to my diagnosis but I see the doctor again on tuesday. I am glad that I found this forum and can ask about others experience.