Hair Loss with CRPS

Hi ! I’ve lived with CRPS for twelve years now. Just last year I started to loose my hair and go bald. I use extensions to cover it up. Fortunately, my pain is only in my left leg and foot. But many days I can’t put my foot on the ground, and I have major muscle weakness in my calf and ankle . The burning pain is so debilitating  I have a SCs which I have to turn up so high, that I think it makes it worse I’ve tried so many opiates and and now on the fentynal patch. Living with this is a nightmare

yes I do have experience extreme hair loss adding CRPS I got diagnosed about 3 years ago but they think I've had it for about 10 or 11 years I've cut my hair short Due because of it thinning out and of it coming out in clumps I actually found out because of this disease my insurance is going to pay for a wig for me I actually have an appointment with a hairdresser that does wigs coming this Saturday you can call your insurance company and find out if they'll pay for a wig then all you have to do is have your doctor write a prescription with the diagnosis of CRPS and if your insurance will pay for it you just find somebody that makes wigs with sell wigs I'm so happy that I'm getting this done being a woman and having hair loss at 37 years old when I used to have long pretty hair it's kind of devastating I hope you can talk to your doctor about a prescription for that hopefully this is helpful for you

Hi,

I have been dealing with CRPS (aka RSD) since July of 2008. I twisted by left knee, developed a Baker's cyst, and within three weeks of the initial injury had full blown RSD symptoms on the lower left extremity. This included swelling, sweating, color changes, diamond pattern, severe temperature changes as much as 22 degrees colder than right side, extreme sensitivity to touch and temperature change, phaso dialation and constriction, shiny tight skin, body sweats and the list goes on.I was blessed with having good doctors who diagnosed me with second and third opinions confirming the original diagnosis. Because no specific nerve damage was found and MRI confirmed the damage to my knee I was given the diagnosis of type one RSD.

For the first year I went through all the physical treatments known at that time: nerve blocks, epidural treatments, radio frequency oblation (only lasted 6 months), spinal cord stimulator (didn't work for me-efficacy only 20% on RSD patients). Next came the barrage of drugs, including methadone to try and reset the chemical imbalance in my brain. I tried 27 different types of drugs, saw 11 different specialist, including Dr. Shwartzman in Philly, and was told aqua therapy was my last hope before trying a Ketamine coma, they are done in Germany, not here in US.

(Ketamine infusions are now approved in US, Thank you GOD)

The Aqua Therapy is my saving grace. It took two long years of desensitisation for me to be able to tolerate getting into the pool with out being on drugs. Persistence paid off! The aqua therapy has given me the chance to have a less traumatic life. It was imperative to be on the drugs and still get sympathetic nerve blocks while going through this phase because the exercise hurt so badly but I was able to stave off the atrophy that comes with the disease.

So, fast forward to present, I have had numerous flare ups which had caused sleep disruption. I also have developed Hoshimoto disease (thyroid auto immune issue) not uncommon for RSD. Then my hair started shedding, and shedding. I went and had a hormone analysis done. (I was 56, post menapausil, and had hypo thyroidism but did not expect what I was told about my hormone imbalance )

So, I was basically upside down on everything! TOO much testosterone, too much cortisol, not enough sleep, emotional mess, not enough esterogyn or progesterone.

All real good reasons for hair loss!

My PCP told me to drink spearmint tea, yep spearmint tea. It worked! I also went on low dose of Spironalactone. My hair stopped falling out. I have tried a few different types of tea but found for me Bigalow Mint Plantation works the best. I also added melatonin (20 mg) to my night time regiment. I also turn off the celular devices or put them in the next room to avoid EMF and low level radiation. There were a few other things I did that were specific to my test results but getting my hormone levels tested was the most revealing. It is not covered by insurance and is not cheap, (I paid $550. in 2018 and the price has probably gone up.

So along with this regiment I get a three day Ketamine infusion done once yearly and still get various nerve blocks done yearly. I still deal with constant pain but most days its only at a level 3 or 4. Flare ups happen and can cause higher pain levels but I have been able to remain upright, not in a wheel chair, sometimes I need to use a cane, and anxiety of even a tight blood pressure cuff or IV can set off a flare up.

The worst part is the depression from isolation. I seldom go out with anyone who does not know me. Its awkward having to explain why you have a pain face on to someone who doesn't understand the depth of this disease. I was married but it didn't survive the injury, but I did!

There is hope. I am much better now than when I originally started on this journey. I am not addicted to drugs or an alcoholic. I do know one person who had it way worse than I did. He used the SCS for almost 20 years and is in remission now for 5 years. His original injury was so bad that they gave him the SCS before it was out of R&D and was one of the first human trials. It saved his arm from being amputated and he went on to lead a full and productive life.

Another thing that often develops with RSD is Piriformis Syndrome from muscle atrophy. Look that one up, you will be surprised, it is often overlooked by the doctors. For those of us that have been dealing with this for many years what comes next is the Autonomic disregulation. It is real and it is very scary but medical research is still being done to better understand the complexities of CRPS/RSD.

I hope my story may shed some light on things that might prove helpful to someone else.

May God bless you with peace and strength on this journey.

Oh my goodness!!! I am SO happy I came across this discussion!! I was injured over 3 years ago and for the longest time the doctors made me feel like they either didn't believe me or that I was over exaggerating my pain level... Finally about a year ago my primary care doctor did some research and diagnosed me with CRPS. I went untreated for a little over two years... My orthopedic doctors I feel didn’t wanna deal with me as all they kept doing was giving me x-rays… Plus I was uninsured and paying out-of-pocket. Anyway, they put me on gabapentin first and it helped but they had to keep increasing the dosage. Then I started to receive nerve blocks but again since I am paying out of pocket I had to stop that for a bit. I’ve been searching the Internet about CRPS and changes in hair textures, growth, tangles.... it seems like my hair on my head is not only falling out but it is also constantly tangled no matter how much conditioner I use it is always tangled. I have always used rather expensive hair products so I know that it’s not the hair products… Also I had electrolyzes done on my arms and armpits several years ago (at least 5 yrs prior to my injury)...Now on my arm that I have the CRPS I have noticed that my hair is growing back rather quickly and very coarse where as my right arm...nothing. I am also "lucky" enough to be considered rare… kidding... The one time I don’t wanna be different...I have developed severe blisters on my arm. It is as though I am burning from the inside out. I also have developed gastroparesis as a result of the CRPS...Life has been pure hell ever since my injury!! But I will always stay hopeful and positive.