Introduction by Trampledrosie

[Trampledrosie]

Hi, I found this thread through a search on ppp. I have had this increasingly debilitating condition for about 4 years. Started on one foot as a small patch and is now covering most of the soles of both feet and now seems to be creeping up the sides and tops of my feet, maybe even my ankles. I have been doing light therapy for 6 months and it has helped a tiny bit on my soles. It is so painful, sore, itchy that I can’t wear socks or shoes and I have become isolated to the point of rarely leaving my house. I am on disability due to other conditions. I think it started as an autoimmune reaction to having cancer which was treated, now 3 years since last treatment. Doctors tell me to go live my best life now that cancer is gone but they don’t understand how painful this psoriasis is. I can make it to the grocery store once in a while. After about 20 mins on my feet they are painful, sore, like someone is sticking hot pokers in me. I also have neuropathy from cancer treatment so it feels like bugs are crawling up my legs most of the time. I gained a lot of weight during cancer and can’t walk to exercise which also helps other pain. I am so frustrated so I am hoping I can find some help or support or ideas here. Hoping not to be judged too harshly as I do still smoke. I don’t drink much alcohol. I don’t have much energy for cooking these days so that has been awful. My stress is through the roof and I am not sure what to do anymore as I am often so depressed that I don’t even get dressed and lose myself in tv or video games. My life has gotten so small. Hoping that I can gain some motivation and find some ideas to try and at least get back on my feet.

[Fred]

Hello Trampledrosie to Psoriasis Club.

First off I will tell you that no member here will judge you harshly, we pride ourselves on being a friendly group. However in the very unlikely event that you do ever feel you are being judged on Psoriasis Club please do hit the report button, I personally will look at it and work with you.

Try not to be isolated and to be honest your doctor is right, now the cancer has gone you have to grab life by the horns and take control. Accept psoriasis will always be there, it can be controlled and may even go in to remission but you do need to work with it rather than against it.

No they don't know how it feels, but we do and you can spill the beans to us as we know how you feel.

You are now a member of Psoriasis Club and you will find a lot of support here, I would suggest checking out the members only boards [Group Specific] to find out more about us. We do have a dedicated thread for our members about depression [Group Specific] where you can always shout out, I've been there I know what it's like. But have a good look around the forum and ask questions, we like helping and I'm sure we can.

You are not alone.

Regards.

Fred.

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[Turnedlight]

Hi, I found this thread through a search on ppp. I have had this increasingly debilitating condition for about 4 years. Started on one foot as a small patch and is now covering most of the soles of both feet and now seems to be creeping up the sides and tops of my feet, maybe even my ankles. I have been doing light therapy for 6 months and it has helped a tiny bit on my soles. It is so painful, sore, itchy that I can’t wear socks or shoes and I have become isolated to the point of rarely leaving my house. I am on disability due to other conditions. I think it started as an autoimmune reaction to having cancer which was treated, now 3 years since last treatment. Doctors tell me to go live my best life now that cancer is gone but they don’t understand how painful this psoriasis is. I can make it to the grocery store once in a while. After about 20 mins on my feet they are painful, sore, like someone is sticking hot pokers in me. I also have neuropathy from cancer treatment so it feels like bugs are crawling up my legs most of the time. I gained a lot of weight during cancer and can’t walk to exercise which also helps other pain. I am so frustrated so I am hoping I can find some help or support or ideas here. Hoping not to be judged too harshly as I do still smoke. I don’t drink much alcohol. I don’t have much energy for cooking these days so that has been awful. My stress is through the roof and I am not sure what to do anymore as I am often so depressed that I don’t even get dressed and lose myself in tv or video games. My life has gotten so small. Hoping that I can gain some motivation and find some ideas to try and at least get back on my feet.

Hi Trampledrosie, and welcome to Psoriasis Club!
Everyone’s story is different but I recognise feeling so fed up with psoriasis, and trying treatment which doesn’t always deliver, and how no one else can understand just how painful it can be when it’s flaring.
There’s lots of info on here and support. I don’t think I’ve ever felt judged. I hope you like it here.

[Kat]

You won't be judged here.

I don't know if we have any active people who are smokers, but a lot of us used to smoke so we understand that it's not easy to quit and that some people do not want to quit and that's okay. And well I don't really know about others, but I also am overweight, actually I am classified as obese even (I hate that word actually but it is what it is) and a lot of us also suffer from other ailments other than psoriasis.

I can truthfully say that I have received nothing but support here. There are at times some different opinions on treatments as to what is best or what works best for some over others, but it's always respectful.

I didn't have a lot of luck with light therapy myself for psoriasis. Thankfully there are a lot of options available. It may be difficult to figure out how much of the pain is from having psoriasis vs other conditions.

As a suggestion, Coconut oil makes a good natural moisturizer and you could even put in the fridge to use cold on your feet (be sure to elevate) which might at least offer a bit of comfort.

Again, welcome !!

Oh and to give you a heads up, Fred and Dave are our resident lushes!

[Grizzly Bear]

Good morning Trampledrosie and welcome to the loony bin.

I’m the resident lunatic on here and I’m in the padded cell next to Craig.



We all understand and feel your suffering TR, me personally, I think it was around 2015 - 2016 that I suffered so badly with psoriasis that I was literally ripping my skin off my body and bleeding badly that I went to hospital and they wouldn’t admit me, so , I had to continue suffering !!! (Go figure)

To help other sufferers of psoriasis, I took photos of my blooded back and body and posted them on here to show and share them with everyone too show that they weren’t alone.
(My photos were in great demand and still are for my botty shot’s, my bum was really bad and extremely sore and painful but thankfully it’s all clear, except for the shrapnel scars)

So TR, don’t suffer alone, we will always try to help you and give you the best support on this here site.

Come back soon

[Trampledrosie]

Wow! Thanks guys. I wasn’t sure if this was still active and I sure am glad I reached out. I really appreciate all your encouraging words and will explore topics on here for sure. My partner has PRP and can’t find anything to work for him either. I will try coconut oil. Vaseline just isn’t cutting it so I bought some organic raw shea butter but have only used it for the past few days along with betaderm. Tried Cerave itch but I don’t think any of the Cerave products are working for me. I will have a look for bleach soaks too. Only been doing those for a couple of weeks and suspect that that might be causing the top of my feet to flare. Also will post some pictures once I figure out where to post them.
I feel better knowing I am really not alone in this fight. Thanks so much for your replies and for having a space like this. Looking forward to exploring and maybe doing some off topic stuff! You guys rock.

[Kat]

For images, there is information on how to post them here:

[Group Specific]

I hadn't heard of PRP... Is it Pityriasis rubra pilaris?  That sounds rough!

There is a ton of information here and always feel free to ask questions.  A small group but a friendly and helpful one!

[Forest Walker]

Welcome, Trampledrosie.  

I'm glad you found us.  A friend of mine recently had a device inserted in her back somewhere to help reduce post cancer neuropathy in her limbs.  She said it's given her 60% relief from pain, which she's very happy to have.  I'll find out the name of the device soon and share it.  It's a sort of electrical stimulator.  She started with an exterior device for a week to see if it would work before it was implanted.  Her favorite thing was sewing, but her hands hurt so badly from neuropathy that it was so difficult for her.  Now she's sewing easier.  Maybe something like that would help you, too.

[Fred]

Thank you for the kind words, we do try to keep it a happy place. 

The forum can look like it's not very active to our guests as they only see the psoriasis boards, also some members prefer to talk about their psoriasis experiences in the members only boards. We also delete accounts over 1 year old that have never made a post so it can look form the outside there isn't much going on, but we have over 250,000 posts and there is often someone around that will help if they can.

You can find some members in the Bar or Coffee Shop 

I see Kat posted a link on how to post images, but if you want to know where to put them you have different options.

#1 Start a new thread in one of the health boards (seen by the public and your images could be found on the internet)

#2 Use members photos or journals (only seen by our members and they remain your copyright)

[Group Specific]

[Group Specific]

Just a thought: If you put the word pustular in the Search it will throw out a few threads you may be interested in reading.

[Trampledrosie]

Kat, yeah that is what he has. After reading about coconut oil here I am going to get some for both of us.

Fred, I did go through some pustular stuff last night. It’s tough to find info and help with it because it’s more rare (or they haven’t found this group yet!).

Forest, I get IV lidocaine every month, trigger point injections every couple of months, SI steroid injections every couple of months and have had steroid epidural a few times plus all the crazy meds. Some of it helps for a few days. What I really need is to find some kind of shoe I can walk in. That was my number one to control back pain.

I will take some pics when I go to the doc tomorrow under the beautiful fluorescent lights. My house is like a bat cave for light hahaha

Btw, I put on some ancient polysporin itch relief lotion last night and it did actually relieve itch for a bit.