Prolotherapy...ouch...

I know I've been slacking lately and haven't updated the blog. The last time I wrote I was going to acupuncture. I loved acupuncture and it helped a LOT. It didn't however solve the problem with my foot so Dr. Lavallee wanted to take a new approach...prolotherapy.

Before I go on I want to let everyone know that acupuncture was absolutely wonderful and I would reccomend it to anyone. It can't however fix actual mechanical type problems, such as impingements, compressed tissues, etc. It is very good for nerve based problems and thing that aren't caused by the physical structure of the body.

Anyway, Dr. Lavallee said he wanted me to go see Dr. Mark Cantieri for prolotherapy. Now, I had heard of prolotherapy, read about it a little and then assumed I'd never have to have it done. WRONG. Dr. Lavallee said it would hurt really bad but it should solve the problem.

The said problem is in a sense a kind of compression syndrome caused by metatarsals and other foot bones having such lax joints that they crush the soft tissues in between them. This causes tremendous pain and trauma to the foot.

Prolotherapy consists of a solution (mainly sucrose or other non-medicinal component) injected into the joint in order to inflame and irritated the tendons and ligaments so that they will heal themselves which will make them tighten up.

Dr. Cantieri drew a grid looking thing on my foot, which I believe was showing where the foot bones are located and the spaces in between and then he started injecting. It was absolutely horrific. It hurt so bad I gripped the table I was laying on like there was no tomorrow. Sure, there is some lidocane in the injections but as some of you may know, lidocane doesn't work on EDS people like it works on normal people.

When it was all said and done I left with somewhere around 46 injections into my right foot, most on the top, a couple in the arch and ankle and a percocet script. The doctor told me that I'd be limping after the injections but should be able to live rather normally.....

...yeah right...by that night I could not touch my foot or move it in any way. Turns out I had given someone my crutches so I was screwed. I crawled for hours until I texted my friend Emily Killilea and asked if I could borrow hers. Her, her husband & dog drove to my house at 9:30 at night to bring them to me. It felt so great to have a friend that would do this at so little notice.

I had to call in to work the next two days, was on crutches for three. It sucked. It's been 12 days since the injections and I still have some pain in the joints, however, NOT in the area that always hurt before. I'm assuming the new areas of pain will go away eventually.

I have at least two more prolotherapy sessions to go to, I'm dreading them like you would not believe but I know I have to do it because I don't want to live with this foot pain the rest of my life.

Acupuncture, you should try it.

Q: Does acupuncture hurt?
A: NO! Sometimes you feel little pricks but nothing like a shot would feel like, more like pulling out a strand of hair. Many of the needles you may not feel at all!

Q: What exactly IS acupuncture?
A: It's too much for me to type so click here...

Q: What kinds of things does acupuncture treat?
A: Here are SOME of the things it can treat, there are many many more... Addiction, anxiety, arthritis, asthma, back pain, bells palsy, bronchitis (acute & chronic), cancer, candida overgrowth, common cold & flu, constipation & diarrhea, depression, fractures, fibromyalgia, frozen shoulder, gout, headaches & migraines, hepatitis, herpes, high blood pressure, HIV/AIDS, indigestion, infertility, insomnia, menopause, menstrual cramps, mesothelioma, mortorn's neuroma, pain (acute & chronic), PMS, pregnancy, psycho-emotional problems, sciatica, shingles, sinusitis & sinus infections, stress, sprains & sports injuries, weight loss.

(These are images taken by myself & Paul at my first session.)

As some of you are aware I began acupuncture about a week ago. It is so awesome! The first session I had took away all the pain in my foot AND shoulder!! I was told by Paul Enright, my acupuncturist that most people if they have pain relief after the first visit it only last a few hours. He said that he he recommends you go to six treatments and then after that you only have to go once ever several months or more depending on your body. Each treatment the pain relief last longer.

Treatment #1: I was slightly nervous for this, although I was told it didn't hurt it was a little freaky. Paul put the needles in and it felt funky, I was amazed at the whole process and then had him take a picture of my foot with tons of needles in it. I laid there for a half hour and relaxed, it felt so good. As soon as I got off the table I started to walk with my normal limping gait out of habit and suddenly realized I no longer had to because I had NO pain!! I then moved my arm and did full range of motion with my shoulder and had NO pain! It was amazing!! After that visit, which was the first my foot had no pain for two days, my shoulder for three.

Treatment #2: My second treatment was four days after the first, I felt a little more confident in my session, that I knew what I was in for, what it would feel like and what to expect. At this point my foot had been sore for two days and my shoulder for one day, but not nearly as bad as before my initial treatment. When I got off the table I was surprised that my foot was still slightly sore and felt no different. I then did tested my shoulder and it had no pain. I thought it was odd, and wondered if it was normal to have one part respond better to treatment than the other?

Treatment #3: The third treatment I was so eager to jump up on that table, not knowing what this session would bring... This session was absolutely AMAZING! For the first time I could feel the Chi moving up and down my limbs with needles! I didn't know what I was feeling, it was very strange and felt so good. I mentioned to Paul and he chuckled and said it's normal, and he described it from his own experience and the experience of others and it described what I felt as well. It was so cool! I got off the table and once again had no pain in either foot or shoulder. I went home and googled acupuncture again and decided to read more, I found that it's common to feel the feeling in your needled areas and that is the Chi moving in the body and that sometimes people don't feel it right away for various reasons. I think for me it was because during session #3 I relaxed to the point where I was very in tune with my body and I thought about nothing else.

My next session is on Tuesday and I can't wait!!!!

By the way my son has migraines, headaches, chronic sinusitis & asthma and he wants to get acupuncture now! When I get done with my treatments then we'll work on him :)

Yes to acupuncture, no to bed...

Dr. Lavallee suggested along with the ketoprofen & nortriptyline cream to do three sessions of acupuncture for my foot. When I found out it was $70/session and insurance didn't cover it I wasn't too enthused, considering nothing has helped the foot so far (except for this $65 bottle of cream), I wasn't too excited about spending $210 on "healing art".

I'm not saying that I don't believe in it, it's just that I've never had it done, therefore my confidence isn't 100% that it will work and I could spend that money on the thousands of dollars in doctor bills that have added up in the last six months.

Anyway, I decided that since I decided to give Dr. Lavallee full control, I would do it since he is recommending it, just so that in case it works I'll be so glad, and if it doesn't I can say I tried it. (Oh and there was a previous comment on my blog about how giving the doctor full control isn't a good idea, and that I should work with him. I do feel that I'm working with him, I guess I call it full control when it's a joint effort, and if I didn't agree with something I wouldn't do it).

So tomorrow is my acupuncture appointment, and although I'm going for my foot, I'm going to let them stick me everywhere I have pain (all major joints), and see how it goes. I'm kind of nervous in a way because I heard it can kind of hurt a little but I'm going to man up and be tough. I'll report back about the experience.

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About the bed, well, the insurance company (Anthem) denied it. Yay. That sucks. They did however say I can appeal the decision which I'm going to do. Supposedly the reason for the denial is that they don't see that it's medically necessary and my policy supposedly states that mattresses aren't covered as a durable medical device, which I was told was covered when I initially called to inquire about it. The woman Spoke with said to appeal it anyway, even though it's technically not covered on my plan because she's "seen stranger things happen" so... I'll be appealing it.

I just don't think they understand what it's like to roll over in bed and have ankles, knees, spine, shoulders, elbows, wrists etc. crack every time. Or have to put your knees in before you get out of bed so you don't fall, or having to pop your pelvis in in the morning...or maybe they just don't give a shit.

I'm not done fighting for my bed so I'll update when I hear more...

Bad news upon bad news. Time to cowboy up!

Today totally sucked. Period.

I'm already unhappy that I officially can't run, jump or walk (more than necessary). I talked to Ashley, the HIT class instructor yesterday and told her I'm not supposed to do those things so she said she could have me do different things while the rest of the group runs, jumps, etc...

So anyway, I go to the class this morning and apparently I'm limping more than last week according to Ashley. I kind of was thinking "oh well, I'm used to it" and I did push ups and other stuff while the others ran and when I could do the exercises that they did, I did them. Near the end of the class Ashley said that she isn't comfortable with me coming to the class while my foot is messed up. I was so disappointed to hear that. I know I can't do some of the stuff but I love going to the class and now she doesn't want me there. I understand why though, she can't focus on my modified exercises while the rest of the class is going on, plus she doesn't like me working out with pain. I was so upset about that, but I don't blame her.

So I went downstairs to Dr. Lavallee's office to see Kerri the nurse, who normally is in the class with me, and told her what Ashley said. She's not happy about it either and she was very helpful with my mood. I was so upset and felt defeated but she pretty much said to keep my head up and she'd like to work out with me and do our own thing. I don't know if that will happen but I appreciate her willingness to help.

I told her how the doctor wants me to swim and I mentioned how I hate doing my hair every time. There was a high school student volunteering her time in the office and she spoke up and said the girls in school saran wrap their hair like crazy and then put their swim cap on and it keeps it dry. That is very interesting and I might try it.

I called Bryan on my way home and he basically told me how I need to take my energy and frustration and turn it towards the pool and make my foot stronger. He's right, so that's what I'm going to do.

A little bit ago I got some more bad news...the insurance company has denied my Tempur-Pedic. This sucks, however I am going to appeal it. I'll post more about this at another date...

Letting the doctor have full control...

(My Floppy Feet)


So yesterday I went in to the doctors office and pretty much told them that I was sorry for thinking I could treat myself and stupid for thinking I could go all summer without some kind of help, that it was getting bad and I'm ready to give the doctor full control.

They played around with my feet, made me do things like walk around, stand on it, jump (that was horrible) and things like that. Eventually it was decided that it's the laxity in the foot joint bones that are causing problems. Not sure exactly what but my guess is it's like some sort of impingement. Either way, whatever the real cause of the pain since it's weak joints, I have to strengthen them. He told the other doctors in the room that I have floppy feet. They seem so flop around and not be steady because they are weak and this can cause many problems.

I told Dr. Lavallee that I would do whatever he said - anything to make it go away... His suggestion was to keep working out in the gym, except not walk, run or jump, and mainly focus on strength training. I told him I enjoy the cardio and he said to do the recumbent bike or the nu step machine. He also wants me swimming...A LOT, like 45-50mins and he didn't specify how often, and that usually means as much as possible. I told him I don't swim as much anymore because I always have to do my hair afterwards and it's a pain. He reminded me that I gave him full control....so I then took that back and said I'd be in the pool regardless of my hair.

Dr. Lavallee suggested I go to three acupuncture sessions (not covered by insurance) and he ordered a compounded prescription of Ketoprofen 20% + Nortriptyline 5% cream to apply twice a day. That was expensive and not covered by my insurance company so I hope it works. I'm going to try the cream first and hope with that and the pool the foot will get better? The acupuncture sessions are $70ea and the cream was $65 so that adds up.

So frustrating that there is no easy fix, which as my eds friends would know, is common.

Accepting that I can't treat myself every time...

Regarding the (R) foot pain I've been reluctant to have the doctor figure out what's wrong because I don't want to have a cast, boot, etc. over the summer. It is getting so bad though and I think I've been convinced that I can self dx and self treat it since that's what I've been doing for the last 9yrs (with no success).

This weekend my foot was hurting SO bad that it was throbbing when I wasn't even on it. I took some of Bryan's meds from his car accident that really helped a lot. This morning I emailed Dr. Lavallee's office in hopes he could prescribe the same meds that Bryan has so that I can finally have relief. Of course, I got a message back saying that he won't treat me like that via email, which I understand but if you've read my previous post you will know how I'm scared to have it diagnosed & fixed yet.

I wrote the nurse back and said pretty much that I would just continue to do what I'm doing and live with the pain like I have been. This is because I'm hard headed and stubborn. I didn't want to go to the EDS conference this summer in a boot or cast or something nor do I want to go to the beach like that this summer so I wanted to just put everything off until the fall.

I had somewhat of a mental breakdown though, I realized what I was doing was stupid. My foot hurts so bad I limp every time I take a step, I can no longer do normal cardio at the gym (treadmill, elliptical or bike) and can no longer live a normal life because I'm always thinking about how far I have to walk because it hurts so bad. Why do I care if I have a boot or cast over the summer? Who cares? At this point I won't be able to walk anyway so why not let the doctor work his magic? I'm over my fear now of what I might have to go through this summer.

I called the office and made an appointment for tomorrow at 8:00am. I don't even care anymore, I can't keep limping and looking all gimpy all the time, it's starting to hurt my knee and hip and it's tiring.

So I'm giving in.............See you in the AM doctor..........it's all yours.....

A POTSy day at the gym...

I wasn't really planning on updating this until I had more bed information but I figured I'd vent about the wonderful POTS attack I had at the HIT (high intensity training) class this morning.

Everything was going good until we were instructed to get a 25lb plate weight (place it on a towel so it slides) and push it up and down the gym floor.

(like this)


It didn't look too hard and it wasn't until I got 3/4 of the way through... I started feeling weird and extremely tired. I stood up and then decided I couldn't make it the rest of the way. I pushed the weight to the end with my foot and then about passed out. I had that feeling where you're going deaf and really dizzy, I right away sat so I didn't pass out and look like a fool. I had to sit for a few minutes while everyone else did some more exercises and ran a lap. Then it was time to do the plate pushes again, so I did them, and same thing... so once again I had to sit. It totally sucked and was very disappointing. They did these again but the last time I decided it was in my best interest not to participate.

POTs doesn't always attack, but when it does it is not cool at all and can be embarrassing. Everyone kept asking me today if I was okay and all that, which is okay but I had to just keep telling them I was really dizzy. They probably think I'm a wuss, but hey... at least I show up... right?