Spring is in the air

I've never been a big fan of winter. Far too cold for my tastes. Spring has always been my favorite time of year- not too hot, not too cold, not yet sticky with humidity. This year has been especially nice, since I have my own yard in which to plant flowers and start a garden (I bought my house late enough into the spring last year to make it tough to do any of this). 

My front flower beds have been in need of an overhaul, for several reasons. First off, the houses prior owner was a bachelor who did not enjoy gardening, and the landscaping made that obvious. Every since thing out front was a shrub. No flowers, aside from a few bulbs and a phlox leftover from the owner before him, and those the prior owner moved around haphazardly while doing yardwork. Add to that one bush dead from an attack of the Mold Spores of Doom and the phlox taking a heavy hit when we tore out and repoured the front walk, and you had some very sad flower beds indeed. 

With money being tight, I didn't want to buy many plants. I did cave and buy 3 of a purple perennial that grows to about 12" tall and has a single little purple flower on the tip of each stem. Thank to brain fog, I can't recall the name of the plant tonight, but they are very pretty and do well in the weather around here with minimal watering needed. My aunt gave me a few flowers from her own yard that needed thinning out, plus some snapdragons she bought for me, and my neighbor gave me a decent sized hosta when she thinned her own plants. All in all, I'm quite happy with how my front flower beds have come out.

Next up was starting the veggie patch out back. I wanted to do some potatoes, more carrots, garlic, and onions this year, so I got my hands on various pots and huge plastic containers to use as deep pots. These large totes are fantastic planters- just drill some holes in the bottom, prop up on some scraps of lumber to allow them to drain, and fill with dirt. 

Prepping the totes:

All planted and ready to grow!

The other big adventure going on right now? I've re-started Physical Therapy. PT is always a LOT of work, but very much worth it. It helps me maintain muscle mass (which has a tendency to vanish on me, between the CRPS and the scar tissue from all the surgeries), it helps keep my pain under control, it keeps me flexible, and more. This time around, in addition to the normal strengthening goals, we're working on improving my walking, including trying to get me down to using 1 crutch for real distances. Yesterday was my first appointment for this round and while I didn't hurt any extra last night, I'm paying the price today with overly tight muscles across the front of my thighs. I know from experience that that will lessen in the next few weeks, but right now my shuffle looks more like a drunk zombie lurch than a graceful shuffle. Now to just hope no one thinks I'm trying to eat their brains... 

Dictionary of My Life

Let's face it, I live in a world of TLA's. That's Three Letter Acronyms ;) . I never have posted a comprehensive list of what these medical terms and TLA's I use so often mean. Many of those coming to my blog are familiar with some of these health issues, but not all, and certainly not all of the various treatments I'm on for everything. So, a big bad list of everything! Okay, it's not quite everything, but I'm going to try!

RSD/CRPS- A neurological disease in which the sympathetic nervous system gets caught in a pain loop and winds up basically burning itself out. This causes extreme pain (CRPS holds the dubious distinction of being the most painful non-terminal illness known to science), blood flow issues and skin discoloration (what I call the Zombie Effect, or purple and white mottling, and Neon Pink, or spots of bright, bright red, are the most common), temperature regulation issues in the affected region(s), skin, nail, and hair growth issues, hypersensitivity to all stimuli (also known as allodynia), a variety of other issues.

Fibro- Short for Fibromyalgia Syndrome, or FMS. A neurological disease in which the nervous systems become hypersensitive to all stimuli. The overactivity in the nerves causes widespread pain. Issues like headaches, IBS, tremors, myoclonic jerks (a type of nerve malfunction that causes major muscle spasms strong enough to move the entire body), and more can occur with fibro.

IBS- Irritable Bowel Syndrome. There are three types, C, D, and A, which is short for Constipation, Diarrhea, and Alternating, respectively. 

Tachycardia- Overly rapid pulse. An average adults resting pulse is about 60-70 bpm (beats per minute). 

AI- Stands for AutoImmune, a classification of health issue where the immune system attacks the body instead of just foreign invaders like germs. Diseases such as Rheumatoid Arthritis, Psoriasis, Lupus, and more fall into this category. 

RA- Rheumatoid Arthritis. A form of autoimmune arthritis that causes joint destruction that can be rapid and severe. 

OA- Osteoarthritis. This is the standard form of arthritis that comes with aging. It is caused by wear and tear on your joints from overuse wearing down the cartilage, or padding, in the joint. It is commonly treated with oral anti inflammatories, most commonly NSAIDs (non-steroidal anti inflammatory drug) like Celebrex, Naproxen, and Meloxicam. 

FD- Fibrous Dysplasia. A rare genetic skeletal disease that occurs in about 1 in 30,000 people. A genetic flaw in (a) bone(s) causes the good, hard bone tissue to break down and leave behind a honeycomb like structure. This can cause the affected bone(s) to bulge and/or break, which can result in severe disability depending on location and severity. There are two forms, Monostotic (MFD) which occurs in 1 bone, and Polyostotic (PFD) which occurs in multiple bones. FD most commonly affects the "long bones", which includes the large bones in your arms and legs, ribs, and the skull and facial bones. 

SCS- Spinal Cord Stimulator. This is an electrical device that is implanted into the spinal cord through an (usually) outpatient surgery. A small battery pack is implanted in the back, side, or stomach, in a fat pocket close to the skin, and wires are fed into the spine. An electrical pulse is fed through the wires to help control pain caused by CRPS, Failed Back Surgery Syndrome, other back issues, diabetic neuropathy, and more. Patients use a remote control to control the intensity of the stimulation. 

SNB- Sympathetic Nerve Block. A type of injection done on the nerves where they branch off from the spine in what's called a Ganglion Bundle. These Ganglion Bundles branch off on the spine between the spine and the internal organs. These injections involve using a long, flexible needle to reach the ganglion bundle, then a mixture of medications including a numbing agent and an anti-inflammatory are injected to reduce inflammation. This can help reduce symptoms for patients with CRPS.

SGB- Stellate Ganglion Block. These are basically a SNB but done in the neck region in order to get to the nerves that control the arms and hands. These can be done from both the back and the front and use a much smaller needle than SNBs, as the nerves are closer to the surface. 

PT- Physical Therapy. .. Need I actually define this one? 

WWPT- Warm Water PT. Done in a heated pool, usually heated to 86 degrees F or warmer. My local therapy center heats to 89, which is comfortable even with the CRPS. 

OT- Occupational Therapy. A type of therapy used to help people overcome and work within limitations caused by a disability or severe injury. While PT works on gross motor skills, OT works on more fine motor skills and tasks of daily living. 

Forearm Crutches- Also known as Lofstrand Crutches, these are the most commonly use variety of crutch in the UK and Europe. In the US and Canada, underarm crutches are more commonly used, especially in cases of short term injury, as they are considered to be more stable. Forearm crutches are easier to negotiate and are less likely to cause nerve damage in the upper body, however, which makes them popular with those with permanent disabilities. 

Immune Suppressant- these medications suppress various functions of the immune system in order reduce inflammation and damage to joints and organs in those with autoimmune diseases. Many of these drugs were originally created for use in chemotherapy.

Biologics- A class of immune suppression made using recombinant DNA. There are a variety of different mechanisms these drugs use, which means different patients respond to different ones. Because these meds are more fragile than most, they are given via injection or IV infusion. They are more expensive and there will not generics of these meds anytime soon (great explanation as to why here), but they provide excellent options for patients who do not respond to chemo-type immune suppressants. Remicade, which I receive infusions of every 6 weeks, falls into this class of med. 

Sooo... at this point, I'm sure I've left out something. Actually, more like multiple somethings. But this covers all of the tags I'm currently using and then some. But, if there's ever a term I use that you don't recognize, feel free to ask. I don't assume people know what all these crazy terms mean- quite the opposite, in fact. 

CRPS/RSD Treatment, part I

I've been promising an overview on CRPS treatment options that currently exist and keep forgetting to do so. I wanted to make sure to get to this before the end of November and the end of CRPS Awareness Month. I won't be going super in depth into anything here in this post, but please feel free to ask any questions. I'm always very happy to help. 

1) Medications

1a) Anti-epileptics

Anti-epileptics, such as Lyrica (pregabalin) and gabapentin, are used to control neuropathic (nerve-based) pain. They can be disorientating at first and I always recommend not planning on driving when very first starting or making a big dose change. I actually find a huge dose change on these to be as or more disorientating as a change of my narcotics dosage. They are usually a first line treatment and can be very effective. Lyrica and gabapentin are related, with Lyrica being the newer of the two. Lyrica is taken 1-2 times per day, and gabapentin is taken 3 times a day. 

1b) Narcotics

Narcotics are very commonly used in the treatment of CRPS. CRPS tends to be very resistant to treatment, so the big guns tend to be necessary to provide even a sliver of comfort to the patient. There are short acting medications, like Percocet (oxycodone) and Vicodin (hydrocodone), as well as long acting meds like Oxycontin, MS Contin (morphine), fentanyl patches, and Butrans (buprenorphine patches). Many patients use both a short acting and a long acting med. The long acting medication gives a blanket level of pain relief and the short acting is for flare ups of pain, also known as "Breakthrough Pain". These meds come with a host of side effects such as constipation and legal ramifications (many doctors require random drug screening while you're on these meds, to make sure you're taking your meds on schedule at the correct dose and only your meds), but they can be extremely useful. 

1c) Others

There a couple other types of meds used in the treatment of CRPS. These can range from anti inflammatories like Meloxicam to the immunosuppressant MTX (methotrexate) to a class of antidepressants called SNRIs. I currently take the SNRI Savella and while I find it doesn't lower my pain any it does make me care a lot less about the pain and it makes it easier to get out and do things despite the pain. 

2) Physical Therapy

PT is ESSENTIAL for the proper treatment of CRPS, but it must be done correctly. Things need to be taken slowly and surely. Very slowly. I've not had the best luck with PT centers that specialize in sports injury patients. The best therapy I've personally found is at a local rehab hospital, where most of the patients are transitioning between a hospital stay and going home. The biggest thing is to find a physical therapist who has experience working with CRPS, which can be tough to do. If there's no one in town who's already familiar, find a therapist who is very curious and willing to do some research and learning. I always recommend warm water physical therapy as it helps with allodynia in addition to pain. For more details on PT and CRPS, feel free to check my other blog posts using the tag "PT".

I was going to try to fit this in 1 post, but even keeping things short and sweet, it's becoming a bit epic in length. To keep things easy and readable, I'm going to break this up into 2-3 posts. 

A is for Ability, not Addiction

My cousin got married last weekend. It was a beautiful ceremony, held at the Krohn Conservatory, filled with just family and some close friends, followed by a reception in which the food was good, the music was fun, and people actually danced. Yep, good weddings can and do happen.

There was one blight on the entire thing for me, though. Last Friday night was the rehearsal dinner, held at my mothers house. About midway through the night, I plopped down with two of my aunts, and we're chatting away. We're a rather *ahem* especially chatty family, which I'm sure comes as a complete shock.

Then it happens. My aunt calls me the A-Word. "Addict".

Considering the fact I live with 6 chronic pain diseases (RSD/CRPS, MFD, osteoarthritis, Degenerative Disc Disease, Fibromyalgia, and autoimmune inflammatory arthritis), my doctors and I decided years ago that one facet on my pain management protocol needed to be narcotic pain medications. There many facets to this pain management plan, though, including PT, anti epileptics, anti inflammatories, an SNRI (type of anti depressant used to control pain), monthly nerve blocks, and physical aides like the crutches and the wheelchair.

The biggest reason it floored me to hear this garbage spew out of my aunts mouth? Her oldest daughter had severe Crohns disease. The fact that even after years of caring for my cousin E my aunt had no clue, at all, the differences between proper pain control and addiction just about knocked me off my chair.

Some definitions:

Tolerance: When a body becomes adjusted to a substance and there is a less of an effect. This is noticed with many medications. There's that pesky period in the beginning when the new med causes side effects. This can be anything from cold sweats from a hormone to dizziness from an antidepressant. Then the body adjusts to it and the side effects ease up. That, my friends, is tolerance. Tolerance can, sometimes, also mean needing more of a medication to get the same effect. 

Dependency: This is when the body becomes very accustomed to a substance and gets cranky when it goes away. The most common medicines to cause dependency are things like anti depressants, pain medications, anti epileptics, prednisone, insulin, and even some cardiovascular medications. If you've developed a dependency on a medication, all that means is suddenly stopping it is going to cause some extreme discomfort, and in some cases, it can even be potentially fatal. If you're taking a medication that causes dependency, they recommend slowly tapering off when discontinuing. There are NO mental cravings for the substance at hand.

Addiction: Addiction is when tolerance and dependency are joined by a psychological craving for a substance. This is characterized by inappropriate behavior  in search of more of the substance at hand. Addicts will do things like steal, harm others, and worse, in an effort to get more of the substance they want. They will sell or trade everything they own. Their family structure is harmed by their behavior. 

I do not now, nor have I ever, actually craved any of my meds. I love the pain relief they provide, but if I'm having a lower pain day, I'll happily skip the meds and give my liver a tiny bit less work that day. To me, the narcotic pain meds mean Ability. Without them, I'd be fully wheelchair bound, unable to wear any clothes but ultra soft fleece, and nearly house bound. Take away all the other pain control tricks and I'd be curled up in the fetal position sobbing 24/7. So yeah, I find it HIGHLY offensive to be called an addict.

To quote my rheumatologist, when  I told him about this, "Saying you're addicted to narcotics is the same as saying a diabetic is addicted to their insulin. And last I checked, diabetics don't car jack to get more insulin."

Just for fun, an example of what proper pain control allows me:

Yep, that's right. I danced at the wedding. I've started to master doing the Electric Slide on crutches. It's a fun party trick, that's for sure! So for me, A is definitely for Ability.

Good News- PT edition

Good news on the Physical Therapy front today! I had my last visit from this most recent round of PT today and I gained a 1/2 of a point in strength (on a 5 point scale) in a month! I started off at a 4-/5 4 weeks ago and today ended at a 4+/5 in leg strength in my right leg. Considering the massive damage done to my muscles over the years during surgeries 1-5, my therapist thinks this is as good as I’ll likely ever get. She’s thrilled I can now do 30 leg lifts in 3 sets of 10 without collapsing afterwards. Heck, I’m thrilled I can do that again. I had been stronger and as is the norm with RSD had lost some strength in the year since my last round of PT. But I’m now strong enough to move forward with the SCS trial!!

I must say, the PT I’ve done in the last 2 years has taught me how patients with RSD should do PT. I have a therapy team where everyone had seen a RSD patient at least once before, they’re all very willing to learn, and they know how to push someone just enough without pushing hard enough to start a massive flare. Prior to finding this team, I’d had therapists who had pushed me into epic flares. The one pushed me hard enough that I went from a cane to barely making it with a rollator- in under 2 sessions. It took me 3 months to get back to a cane from that run in. And I didn’t know enough about RSD at the time to say “NO!”

How did I luck out on this team? Simple. I skipped all the normal therapy centers. Instead, I signed up for outpatient therapy at the local rehab hospital. Since they work primarily with victims of major accidents or the very ill/elderly, they’re used to patients who aren’t going to leave their care ready to go run a marathon. Instead, they understand that making it through a small store with 1 crutch instead of 2 is a huge victory.

We did warm water PT exclusively in those first months following surgery #5, twice a week for 30 minutes. The pool there is- get this- 89 degrees F at all times. The air is in the mid to high 80’s as well, so patients don’t get chilled. And they have onsite shower facilities, in the same heated air, to get the chlorine off sensitive skin at the end. I have to say, the pool therapy has calmed down the allydonia and burning-specific pain more than anything else I’ve tried (aside from the Sympathetic Nerve Blocks). It keeps me capable of wearing tights and yoga pants, and even the occasional pair of very oversized, loose fitting khaki cargos, instead of just fleece PJ pants. I love that pool with a passion. Added bonus: I can’t walk on land, but I can walk laps, without holding on to the handrail, in that pool. :D

In the beginning they used the lift to get me into the water, which worked great as my leg was still very swollen and my knee barely bent. But after several months they were able to teach me to get in and out on my own using the stairs and handrail. It’s not smooth or sexy, but it sure gets the job done. Plus, knowing how to do that has allowed me to use other pools, such as the pool at the beach house this summer or the heated kids pool at the gym down the road. We started very slow and have built up, slowly, over the years. I even wear ankle weights now in the water! We also now do some land based exercises, as I’m considered strong enough to manage them. They tend to be more painful, but they work different things, so it’s a valuable tool to have in my pocket.

I have to say, I HIGHLY recommend Warm Water Physical Therapy with a very experienced team and a very warm pool for RSD patients. It’s been a life saver for me. Remember, though- slow, steady, and very turtle-like progress. And NO ICE!! (Ice can permanently worsen RSD by demyelinating the nerves in patients with RSD. Why it does so is unknown.)