Sharing stories about Lesions
 

I was interested in others who have developed lesions and ulcers, how they did and the duration and treatment. I did not have my first lesion until year 5 and it still remain my worst lesion to date. I was told by my pain management doctor, he knew they were coming(I was furious, he didnt prepare me-but how can you for something like this?) and he felt part of the cause is/was there were pain episodes greater than meds could control. I would agree. Im interested in your feelings and experiences. thanks. cz

I have to tell this story about my worst lesion, forgive me.

My worst lesion, was on my knee, on the orginal injury leg, I do not know if that is significant. it started as an electric shock to a place on my knee cap with immediate swelling that looked like a bee sting.
The burning and pain was severe enough to cause me to grap a table to keep from fallling.
Then my knee swelled. I stayed off it , the entier leg, the rest of the night. I had a very restless night.

I awoke in severe pain, crying out, I had a lesion on my knee the size of a the palm of your hand. It was open and raw. the slightest bit of air was intolerable as was the pain overall.

I could not stand on my leg the pain was searing thought the whole leg. It turned out, I would be in my wheel chair fo nearly 4 weeks. The lesion stayed open and ozing for about two weeks, then it started boring down deep in to tissure and muscle and became an ulcer.

It was grotesgue. Of course all doctors thought it was someing else.

At one point I went to the RR as I just could not stand the pain any more. They admitted me. This was a huge mistake, going to the hospital- and letting them admit me.

They had no idea what RSD was, well vaguely, The next am they took a biospy of the lesion and isolated me. They wore masks when they came in my room and gloves.
I can not express how painful the scraping of the open lesion was... they tought I had mercers. Then they thought I had herpes etc etc.
It was a horrible experience, very painful. after 4 days they belivied me. that rsd caused it and deemed it a neurological burn.

After that they did notihng for it. they had absolutely no idea what to do for it. I had to build a little "fort" around it with pillows, blankets and sheets to protect it from the nurses and the hospital airconditioning.

they did not clean it, dress it, put pain sav on it or anytihng. It was awful. i couldnt wait to get out of there, they were absolutely terrified of it.

It took months for tihs ulcer to run its course, I could not stand for clothing to touch it. It eventually develped a scab over it, this helped but was still very pain ful.
I have a terrible scar from the whole ordeal. During my leg flares this scar has a flare of its own to this day, very hot and painful and changes many shades of purple. I am always afraid it is coming back. cz

I too suffer from bad lesions and know how bad they can be.

My first one started on my foot on the incision from the surgery that started this whole thing. The scar had been healed for about a year but then little by little started to open until the whole thing was open.

Every pain you describe is exactly what I feel, stinging, burning, electric shocks, and throbbing.

Sad to say its been 2 years and its still open. The whole lesions totals 5in long by 1in wide and drains about every 2-3 days. Doctors have tried and tried to get it to heal but it just wont and they can figure out why. I can clean it or wrap it as the pain is way to great, I guess I have just been lucky it hasnt gotten infected. My main doctor did find otu there is a neuroma on my main nerve right in the middle of the lesion so he thinks that is why it hasnt closed, they have tried to get rid of the neuroma but so far no luck.

I have also developed other lesions in different places, legs, back, hands. The other really bad ones I had that I was lucky enough these did heal. I had an IV port implanted as I was starting the ketamine and am also in the ER often with flairs and all my veins were horrible so was getting stuck maybe 3-4 times before they got it so the port was needed. Well about 3-5 days after getting it in the incision wasnt healing instead the layers of skin was pulling apart to the point we were starting to see the stiches that were inside. The lesions were bad and was about an inch long, we were all just crossing our fingers that it didnt completly open. My doctor started giving me an antibiotic which I took for a total of 3 months which ended up helping and eventually it closed. When they use the port they still have to be careful as the skin is still very weak so like before they put the tape on they have to cover it with gauze so when they pull the tape off it doesnt rip my skin off.

Thats my story with lesions, like every part of this disease these too arent fun at all.

Niki

Niki
 

Niki,
You are so brave, thank you so very much for sharing your story, I was begining to think I may be the only one who gets these. Now hearing your suffering, I realize how lucky I actually am that mine only lasted 4 months. I know what you mean about the hospitals and doctors having absolutely no idea what to do with the lesions- it just amazes me.

I fortunely took pictures of mine from when it orginaly started, the electrial shock that caused the swelling like a bee sting, though the entire 4 months. I sent these photos to a compound pharmacist I had been working with for some time in regards to my alloydina..

Now when I get these horrific electrical shocks- which to me means a lesion is going to develop I guickly cover it with a gel that is specially mixed for me.

Nikki, I have something that may help you. this same compound pharamacy after viewing the photograpy I sent- developed a two step process for treating the lesions for me. It has been so effective. It has stopped all my lesions from developing in to ulcers - which is what I belivie you now have on your foot.

And it has helped heal the open ozzing lesion.
I am excited that his may help you!

The second compound I put on is actually for gagarine. How weird right but it works. I will pm you the information. you are in my prayers. I hope tihs will help you. God bless cz

I get lesions but the docs I have say they are hives. What happens is when my nerves get riled up real bad my skin starts to itch so not thinking I scratch and keep scratching. Soon after scratching i get these blisters that look like I burned myself. They are filled with fluid just like blisters you get when you really do burn yourself but I actually scratch myself because it itches so bad. When the blister breaks I have a very raw open wound. It will eventually scab over but it is extremely soar to touch. The least little bump and I go through the roof. It takes months for them to heal up. I usually get more than one when I get them and sometimes they are side by side and sometimes on different limbs. I get them alot on my hands and arms and sometimes my feet. When they finally do heal they leave nasty looking scars. Is it a possibility that I have what you guys are fighting or do you think mine are different?

Thank you,
Tracy

Tracy , the itching is different
 

Tracy thank you for posting, the hives you have do start out sounding like lesions, esecially since they appear when you are stressed however my lesions never itch. I could not scratch them they are way too painful to touch. So yours do seem to be different from mine at least. I have never had itching as any component of my rsd- but many others may. My lesions appear when the pain is not controlled under at least a level 8 for a sustained period of time- then of course the stress comes in to play. They do sound different from mine. I am sorry you are having such a time with these, be careful of infection. take care, cz

Thank you CZZ74 for all the info it really is helpful. I was wondering the compound you put on the lesions how much and how often did you have to put it on? My RSD pain is really bad and any touching or moisture causes extreme pain. My doctor gave me an antibiotic cream to put on the lesions but had to take it off right after putting it on due to the pain.

I am going to print all the info you gave me and tell my doctor about it and see what he says. I just am not sure if I will be able to even put it on.
Thank you again for all your help!

Niki

I understand,
 

Niki, i understand exactly, i could not apply anything to my lesions once they are open either- you must apply this as soon as you feel the burn and the electric shock - any or all warning signs you have the lesion coming. Once they are open mine would have to numbed with elma creme with I can barely tolerate, and i mean barely and then apply to gel after the area is totally numb. the trick with this produt is to use it before thelesion opens. do you feel the warning signs.? I will but the script mixtures in pm to you. cz

I just wanted to let you know that I don't start with lesions at first. When my nerves are riled up it causes me to have more pain and after that I start to itch then I end up with blisters that break open and leave lesions that are very painful and take it seems months to heal up. You can't even touch them they hurt so bad. The least little bump and i go through the roof. So maybe mine are different I am not sure.

Sincerely,
Tracy

CZZ74, I did get your PM Thanks so much I will talk to my doctor about it the next time I see him and see what he says. What is it you use to make the area of the skin numb? When you put it on does that hurt? I honestly dont get very big warning signs before they open, the most I notice is thining of the skin then within hours it could be open and thats when the pain goes crazy. Where most of my lesions are, are on the limbs which I have very pour blood flow to the point my legs turn blue, so I already have so much pain everywhere that I think I just dont notice the lesions forming until they are there. Then some of my lesions were caused by a cut, surgery, or something so the damage is done and then it just wont heal. Its actually kind of strange I dont feel it until its to late as I am so sensitive I can feel someone walking in another room, or even if a hair from my dog falls on me I can feel it, so I dont really know why I dont notice the thinning of the skin like I should be. Thanks again!

Niki

Isn't it interesting that these lesions seem to be quite common and well known to us here on the board, but doctors and other health professionals have never heard of them? I have had a couple of doctors insist they are varicose veins. Really? Varicose veins that are round, open, and oozing pus?

When did they teach med students that you are forbidden to say: “I don’t know, but I will try to find out”?

Sorry for the rant. I had a very frustrating visit yesterday with a new rheumatologist.

Mike