Pain, Pain, Go Away!

Dercum's Disease
#1

Hello my Peeps!! You’re all so sweet and marshmallowey… I know it’s not a word, but I think it should be!! LOL!!!

Ok, so I seem to be on a downward spiral at this time, I cannot seem to get a single moment of relief of pain… I’ve tried all different kinds of OTC meds, heating pads, Hot baths, you name it, I’ve tried it, but over the last 2-3 weeks I’m in CONSTANT pain from my neck to my feet!

Has anyone else experienced a “flare-up” for this amount of time? I can’t get in to see a Dr. for another month, so that’s out and I’m about to drop off the edge of sanity to the jagged rocks below… which isn’t a good idea since I’m scared of heights…LOL!

As you can see, my sense of humor is intact (sick and twisted as it is… oh well!) but I’m not sure for how much longer. I don’t do well with pain and I need SOME kind of relief, even if it’s momentary, that would be something to look forward to and I think I could stand it another day.

Any advice… besides jump!!! LOL! would be GREATLY appreciated. Thanks for taking time to listen to my dribble… it’s usually not so loud… but even my hair hurts… lucky me!! Take care and I’m looking forward to your responses!!

LOVE TO ALL!!!

Stace

#2

DO NOT JUMP !!!

what are you trying for pain relief ?? Have you been rx with Dercum’s??
How come no one’s taking care of you?

You mentioned OTC meds. Do you not have pain meds prescribed for you? I
know a lot of folks dont like to take them, but I truly would have shot one
of my feet off before now if I didnt have pain meds.

You can’t get in to see ANY doctor ? Is your little town doctor deprived ?
Or do you live in a big town?

Go to a church, and ask the pastor or priest to lay hands on you and pray
for you. And I am going to pray for you right now too. I know what its
like to be tortured by pain.

There, I prayed. I was actually going to type my prayer, but then I
couldn’t remember if this board has freedom of speech. In any case, God
knows your needs hon.

I am sorry if this isnt allowed. It is the FINAL and only answer though.

Hugs honey and I hope you get some relief real soon. You could always try
freezing yourself in a bathtub of ice since the heat didnt work !
YIKESSSSSSSSSSSS NO NO

Calle//Carin in AZ

#3

Hi Stace! I like your “Alien Nation” description. That is where we all dwell and not by choice. You are just a kid! You can’t let DD get you down already. The pain meds at least make you sleepy so you don’t feel the pain as much. Give yourself a break. You aren’t in charge of making everybody else have a good time even when you are “down”. It is OK to be a caregiver to yourself as well as others. I know how you are! Busy being nice to everyone but Stace! Take a mini-vacation. Soak in the tub. Eat chocolate. Make people feel your lumps and give you a pity party. We all deserve an occasional sulk. I know that you feel like you have to bring the spirits of those you care for up, sometimes at the expense of having enough energy left to take care of your own needs. I am like you. I have always thought it is my responsibility to keep everyone within reach warm, dry and happy. Now, in my “golden” years, I wish I had been a little easier on myself. I wonder if you can learn to be selfish or if is an inborn trait? Calle is right, get on some more meds. I recently went to the doctor and told him my level of pain was unacceptable. He gave me an additional med! I have had a lifetime"flare". It is like a gradual increasing of the pain and symptoms which has lasted 40 years and I sure have not gotten any better! You have only just begun my dear. Get a little selfish, you can do it! With your great sense of humor you can handle anything the DD can dish out! : )
Hugs, Grandma Sylvia

#4

I have been absolutely on top of this world for about 4 days now, I even had a telephone appointment with a physiotherapist to explain about my pain and found it hard, i find it hard to explain pain when you dont have it. I thought to myself…‘am i going mad, have i really experienced 3 months of total pain in my elbow, neck and hip?’ as being temp pain free made me forget about the pain i was in. Until today, they are starting to flare up, my neck is so painfull and i cant get off the couch. back to the painkillers. I was prescribed paracetamol, ibrofen and codeine phosphate. I am in the UK and thats what they prescibe for general pain…it doesnt ease the pain but helps a little.

#5

I’m glad to hear you had a few days off, but very sorry to hear you are back in pain. Lets hope the next pain free spell lasts longer.

Pamela

#6

Thank you ALL sooooo much for responding…it’s always nice to know you are not the only person floating around the universe with issues!!
Here’s part of my dilemma… I am unable to take powerful meds (ie…Vicotin, they make me sick and I cannot function on them… no work-y= no money) and I don’t have insurance… and most of the meds are $$$$$$. That is also the reason I have to wait a month before I can get to the Dr. because I go to a clinic that has a sliding scale so I can afford to go. My other problem is that the Dr. that was helping me moved to another state, so I have to start at square 1 with ANOTHER Dr. who I"m sure, will look at me like I have 9 heads!!
I am realizing what you are saying though… Stace needs to take care of Stace… I am Aunt Bea and Madea all rolled into one… I’ll take care of everyone else at my own expense, but when I can’t do it anymore… I will bust a cap in someone’s ass!!! LOL!!
I have to keep my sense of humor because if I don’t, they WILL have to come and take me away!!! That’s the only part of me that ISN"T invaded by aliens!!!
I’m also begining to realize that I have to accept that I CAN"T DO IT ALL, and that’s been really hard for me, I don’t give up easily… and that’s been the hardest. I cried to my hubby the other nite… I told him that I need more help from him and the kids around the house and other things… he was STELLAR… while I’ve been at work this weekend, he and the kids cleaned the ENTIRE house!! Thank God for them!!
You are all so amazing and I thank you for your love and support, it’s nice to have people who understand… it’s just too bad that we all have this understanding amidst such a terrible circumstance.
I promise you I will get my act together… and thanks G-ma Sylvia for giving me permission to have a pity party… I haven’t had one in the 3 years I’ve been dealing with this… And Calle… I love you girl… yes… Wyoming is void of Dr.'s … at least one’s that will PAY ATTENTION!! I have NOT been dx’d with DD yet, it’s been self-diagnosed and I get tired of Dr.‘s here treating me like I’m just waisting their time with illusions of grandure and that I"m just an attention monger who wants medication… like I said… the 7th realm of Hell!!!
Ok… enough babbling… I love you all… Any suggestions of meds that might help would be greatly appreciated so when I do go to the Dr. I can ask for something besides Toradol… that’ s the ONLY script I’ve gotten from the Dr. for pain.
Love… Kisses… and Hugs abound…

Stace

#7

OK, here’s the deal. However you have to do it, go to San Diego to see Dr. Karen Herbst. She will diagnose you or let you know it is not DD the same day you see her. Believe me it took a while to be able to see her but it was so worth it! Now I’m treated by local doctors.
As far as Rx pain meds, if you eat before you take them it is likely you will tolerate them better. If you get used to taking them you will not have all the weird side effects after a few days. I am only able to keep working because of taking oxycodone 3 times daily.
Good luck, Lisa

#8

Hi Stace,

I do have insurance, but I am in the same boat with the meds. Oxicontin landed me in an ambulance followed by a 3 day hospital stay years ago. I can’t take codiene or vicodin at all, and pretty much everything makes me violently sick for days, even when taken on a full stomach. My job doesn’t allow for any drugs anyway. (I drive a school bus.) I rely on Liqui-gel type ibuprofen, but only when the pain is really bad. Those are easier on my stomach than the pills, but even those can irritate it so I use it sparingly. Heat and ice packs are my friends.

Pamela

#9

I have used a tens unit and it helps. In fact, I am going to get another one, I wore mine out. Check out these sites.

Davana

www.medcareservice.com

#10

I did some checking on this because I found it interesting. I also have wondered about the ads on TV for these patches you put on the bottoms of your feet when you sleep at night that are supposed to extract the impurities from your body while you sleep. They show the people removing a heavily blackened patch from the bottoms of their feet.

I have always been a skeptic on these types of treatments, but in any event, this page http://www.whosplayin.com/xoops/html/modules/weblog/details.php?blog_id= 183 shows how the ionic foot spas work. Phil you are a chemist - can you shed some light on this subject perhaps? Is this guy telling the truth about the ionic foot spas? If so, I just don’t want people wasting their money on a scam. We all have to be really careful in our searches for help. There are snake oil salesmen at every corner and we must be on guard.

I don’t mean to blast anyone for trying new things - as in who knows what might or might not help, but sometimes if you are able to do a little research first might be a good thing to do before spending your money that might be better served elsewhere.

Yes I’m a skeptic as I’ve said, and I truly wish I weren’t sometimes, but for me, my money and how I spend it is important. Yes I’m as desperate as the rest of you to find treatments that will aid in some relief of symptoms, and as you saw even the Noni Juice/Grape Seed Extract took me back some. I still haven’t tried either because my doctor has not yet cleared me to try it, but I have done an awful lot of reading on the benefits of both of these treatments and I dooooo trust Dr. Herbst immensely, so I will try this as soon as I’m cleared to do so. I digress - but as you can see, I just want you folks to not walk into something that may not benefit you at all.

That’s all - I’ll get off the wagon now, and I hope I’ve not offended anyone. Phil as a chemist - I truly would like to hear your thoughts about this treatment and if you think it can truly benefit anyone or not. I hope I’m wrong actually.

Take care everyone.

Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-5625
Tel: (315) 268-6738
Fax: (315) 268-7994

#11

Hi.

I have tried the ionic foot spa. My massage therapist is a friend and had one for a while. He used me as a guinea pig to see if it worked and so my treatments were free. It was great! I couldn’t believe the stuff floating around in the water after a treatment and it even helped me quit smoking by pulling the nicotine out of my body. The pads, on the other hand, have been debunked. They have a substance in them that turns black when exposed to oxygen for a while.

Pamela

#12

Thanks Pam. I’m sure others may have tried these, but I just wondered if Phil would agree with the website I showed and if what that man was saying about the water changing do to the electrodes and the salt water, etc.

Thanks for sharing your experience Pam. Hey if it was free, then why not try it. You’re not out anything one way or the other.

Take care.

Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-5625
Tel: (315) 268-6738
Fax: (315) 268-7994

#13

Suzann,

I’m curious about that too! I just wanted to put my 2 cents worth in.

Pamela

#14

Hi Suzann,

Just so you know, you did not offend me. Foot spas may or may not work. The jury is still out.

Hugs,
Pamela

#15

Hi Suzann,

There was a 60 minute program about this subject, I watched it about a week ago and it showed that the changes in the color of the water is due to a chemical reaction of the salt and the copper tubings.

I am not a chemist but I am a cosmetologist and have given many foot baths, pedicures and foot massages and my recommendation is a foot bath with warm epsom salts and peroxide. This recommendation is offered with caution for those who have diabetes, high blood pressure, heart or circulatory problems and I add the usual warning to always consult your doctor before beginning any treatments.

Your friend,
Sylvia

#16

That is precisely what that web link dude was saying. That’s why I wanted to send it warn people that there may not be any validity to the foot spas, and I’m not a chemist either, but what that web page showed and stated, made believe what he was saying over the manufacturers of the foot spas are saying, that was why I asked Phil if this kind of chemical reaction can occur, leading people to believe that the changing of the water color is actually the toxins coming from their bodies. Apparently it isn’t.

However, I know Dr. Herbst has suggested the Epsom Salt and Peroxide baths, but that was to bring oxygen into our systems, I don’t think it was to rid our bodies of any toxins. I didn’t try that, because of the light headed side effects she spoke of. I often have those types of light headed feelings early upon rising in the morning, and I thought, just my luck I’d get one in the tub and pass out and drown myself and they’d find my big fat lumpy body laying there much later. LOL Some of the things we think of sometimes huh? Anyway, that thought kept me from ever trying it.

But thanks for verifying that you’ve seen this on TV as well. Just made me wonder and as I said I’m a skeptic on some things. Although Pam states she did find relief in the foot spa, so who knows I guess.

Thanks for sharing.

Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-5625
Tel: (315) 268-6738
Fax: (315) 268-7994

#17

Hi everyone,

I guess I get excited when I find something that works for me, or makes me feel better. I have had so many bad experiences with Medical doctors that I have a tendancy to lean towards alternative health care. I in no way meant to offend anyone or give medical advice to anyone. I am very much a skeptic myself and I want proof for myself.

The main reason I tried the foot spa was my best friend who had silicone poisoning from a ruptured implant, this happened about ten years ago and she has been so sick with fibro and other things for years, she had the foot spa and the silicone was floating on top. It was amazing to both of us that it could draw it out of her body. The person who we went to has thirty five years experience in medicine and studies constantly.

I certainly am not offering any medical advice, I merely meant to share a helpful experience that I had. I am NOT a chemist or a doctor, but I do know my body and it helped me. I apologize if I offended anyone.

As I stated I get excited when I find anything that makes me feel better. I am sick of being sick and I know we all feel that way for sure.

Hugs and God Bless all,
Brennie

#18

Brennie,

You did not offend anyone. Me being curies goggled the foot spa and found the site I listed which stated that these treatments can be a waste of people’ s money. I’m glad it made you feel better. that is the key to any treatment. No you don’t have to be a chemist to know your own body. If you got relief from the foot spa then perhaps there is more to it than this site was listing. I was just being my skeptical self and wanted to be sure it was not a snake oil salesman type treatment. There are many out there willing to take out money and offer us miracles, and what I read it seemed like this could be one of them - just like the foot pads I mentioned.

I asked Phil to comment because he is a Chemist and I thought perhaps he could say yes or no to what this site was saying. Again, if you got help from the Spa, then maybe there is more to it that this site does not say. I’m happy for you; Pamela said she got relief from doing it as well. So there you have it. Some things may seem like they couldn’t possibly do anything worthwhile and they can. So again, I’m happy you have found something that does work for you. You again did not offend anyone, just as I hope my skepticism did not offend anyone, but I think it did. I think I hurt you by commenting that this could be a waste of money and I’m sorry. That truly was not my intention. I have often wondered about these claims of the foot pads and the foot spas, so I was merely trying to get some science behind it.

Please don’t be upset with me as I meant no harm, just being my usual curious self. Continue to share your experiences, because again we just don’t know what will and won’t work for us and sometimes we have to try things that may not seem ordinary or even helpful because who knows.

Thanks for sharing your experience.

Take care.

#19

Brennie,

I agree with the whole foot issue. I do Reflexology and I have seen miraculous things happen to people. I don’t feet anymore as to my tired hands but, I can tell you for myself that everything in your feet represent everything in your body. Your foot is the map of you! My husband and I tried those overnight foot pads. They stink but we both felt more energized. I have to say the pads really stick and are hard to get them all off in the morning but we tried them for 2 weeks and started feeling different. We can’t afford anymore until my stupid social security starts, if it will.

I am recommending you try to find someone who does reflexology, no you can’t do it on yourself either. You will be amazed! I NEVER had anyone tell me they didn’t feel any difference within the first treatment. Let me know if you do. There are a lot of types of Reflexology make sure you find someone who does the Ingham Method of Reflexology. That is the premier method. This would be great for anyone to try. I haven’t found anyone else here in my neck of the woods in Michigan to trade with :frowning: or I would be going once a week.

Hugs,
Linda

#20

Hi Brennie,

I think we are all just sharing our own experiences with things we have tried. The chemical reaction of salt and copper tubing does not explain to me why everyone who tries this foot spa seems to see different things in the water at the end. One might see what looks like silicone, while others see brown sludge or, in my case, bits of blood, lymph (according to the therapist), and various other impurities floating in the water. It was different with each treatment too.

I wasn’t paying for the treatment and I know my therapist truly believed this machine worked wonders. We may have been wrong, and it is entirely possible that the positive effect it had on me was all in my head! I’m still not sure. I can’t imagine that the sharing of ideas would offend anyone. At worst, the ionic foot spa doesn’t work and is a waste of money. At least it doesn’t cause any physical harm to soak your feet in salt water. This is not medical advice, just an opinion.

Pamela