Friday, July 11, 2008
Well, it is the end of week two. My pain has spiked a little in my extremities; hands and feet. My right arm is a little sore, I think from the injections though. My eyes are fairly the same, argghhhhhh. But otherwise I think there is some improvement. I will know more on Sunday I think, when I have missed two days of treatment. Although I shouldn't notice as big a difference this weekend as I did last weekend apparently. I am hopeful to see big difference next week, maybe some big ups and probably downs, that will mean I am near the big wall!
Some have asked what other disorders/conditions/diseases are indicated for Hyperbaric Oxygen Therapy.
On Doctor Allan Spiegel's website, NATIONAL HYPERBARIC OXYGEN THERAPY , there is a very extensive listing. CRPS isn't mentioned there because there is an entire section devoted to it elsewhere on his site in the NEUROLOGICAL DISORDERS SECTION as well as in the RSD THERAPY section.
Something else that has come up in recent days is the more than rare occurrence of RSD patients actually popping up with Lyme Disease. If you aren't familiar with the disease and/or its symptoms you might want to check it out. Some of them; neurological changes, such as memory issues, tingling in the hands/feet, swelling and pain in the joints, pain/weakness in the arms and legs, and many more. Some of those sound familiar guys?
I doubt you will find anyone who treats patients with HBO that doesn't have a few stories of patients who come in with a diagnosis of RSD that end up testing positive for Lyme disease. Fortunately the treatment protocol is the same, maybe a few more treatments for the Lyme disease patients I am told. But otherwise it is basically the same treatment depth.
I am probably driving Phil, the technician, and Dr Spiegel crazy with all the questions I ask. I am a naturally inquisitive person to begin with but when I undergo a treatment such as this, which is fairly unknown to most in our community despite a plethora of information available, I am even more in the face of the people performing the procedures. Not just for me but for all the people who come after me, who come to me with questions.
I don't want to sound holier than thou but I take the trust of my pain community friends and family seriously. When people visit our website and read the information there I want them to be assured we have checked out the information thoroughly and stand by what we write. The websites we refer people to are sites we have checked out. The people we work with in the pain community are dedicated to healing.
Someone asked me yesterday what I was going to do if this procedure healed me completely, left me with zero pain? I said I hadn't really thought about it. I don't think they believed me. But it is the truth. I have been dealing with CRPS since I was 14. I had numerous breaks, tears, and bruises all growing up through sports. I got in the car accident in my early twenties and broke my back, among other things. Later, I developed Fibromyalgia. I have dealt with the eye issues/vision problems since I was 14 as well.
I am not complaining, not at all. I am simply saying, I have dealt with pain for so long I am not really sure how I would handle not being in pain. I would like to know. I am praying it will happen to some degree, meaning whether it will be 90, 95, or even 100% pain-free I don't know but I will gladly take whatever I can get, every inch, every % I can get. Because the healthier I am, the more I can help others with their pain issues. I know it is my life's work, has been and will continue to be.
I am trying to do everything they tell me to; eat the right stuff, rest as much as I can, take my vitamin E, D, and get my B vitamin injections. I try to swim as often as I can to keep my body active as well. Not doing laps or anything but just being in the water and staying limber. I love the water.
And I try to learn everything I can.
Ok, enough of this stuff.
Have a great weekend everyone! Go, enjoy, have fun, swim a little, rest a little, do something enjoyable, read a good book, learn something new, and share a good joke!
Thursday, July 10, 2008
Today was Treatment Day Eight.
Some of you were wondering if you missed a day yesterday. No. I was a little tired and had to get out some stuff regarding the next meeting for the Palm Harbor/Tampa Bay Support group as well as the Orlando Group's first meeting and by the time I did that. I was wiped out.
Dr Spiegel, Susan, and many others whom I have spoken with along my HBO journey have advised me to try and keep my on-line and off-line activities to a minimum in order to get as much rest as possible. As most of you fellow CRPS patients have been told at some point, the majority of CRPS patients tend to be Type-A personalities and I am no exception. Taking it easy is not a simple thing to do on the average day despite the pain and exhaustion, not that I am able to do tons but correspondence from the RSDHope organization does keep me busy.
Plus, because of this disease and the pain I have dealt with for more than 3 decades, I have always approached my days in such a way that I have to get as much stuff done as early as I can because once I stop for the day, I am done. Getting my body, and sometimes my mind, going again is not an easy thing for me to do. I liken it to a ball rolling downhill. I have to keep my momentum going. Petra, my better half, will always be after me to slow down or sit down and take a break from doing something and I will tell her, "No, I want to finish it now." I am sure she thinks I am hyper but the fact is I am afraid if I don't get to it now, I won't be able to get to it later.
So, sitting around and getting lots of rest is extremely difficult for me. But I realize that this is an expensive treatment, that is a month of my life I am devoting to it, that my Dr and his staff are devoting to it, and I cannot waste this chance to be better by not resting, and by not making sure I take advantage of it by doing what I need to do.
Still ... I can be slow to remember this sometimes. I feel like I am playing hooky.
Yesterday I was reminded of this, the rest thing, when a friend of mine whose mom has been through this treatment for her CRPS, sent me his tips for getting the most out of it. Jason has his own RSD Blogsite where he posts articles relating to RSD/CRPS, and he and I have become friends through first, our affiliation with American RSDHope and his blog, and then second by his mom going through the HBO and my doing it, and third, he is going to be involved with the new Orlando support group down here.
The tips he shared, some of which I have already shared with you, are as follows;
- Drink anti-oxidant juices
- eat really well
- Take grape seed extract pills (300 mg twice a day) during this treatment
- Drink plenty of water, as much as you can (but not a lot before you go into the chamber since you don't want to have to take a urinal inside with you unless you have to)
- Drink not just plain water but add a "pinch or two" of sea salt, there is something in sea salt that will help this process.
I wanted to mention a couple of things before I forget them! I know, it would be shocking for a CRPS patient to forget something. I always say I bring Petra, my SO, along with me to places as my "memory". I once had an amazing discussion about memory and CRPS patients with a very brilliant Dr. Petra, and other SO's I am sure, would get frustrated at what I would, and wouldn't forget. How could I forget these things but remember these other things? Was it because I was paying attention to one and not the other? Or because I wanted to remember one and not the other?
For me, and apparently many CRPS'ers, it seems retaining numbers or things having to do with numbers, is fairly easy. Dates, phone numbers, baseball stats, football stats, etc. But things that use the other side of the brain, ideas, faces, colors, places, directions, etc., forget-about-it. According to this Dr., it all had to with the part of the brain that is affected and attacked by CRPS. It was amazing and has helped me a lot. I now try to equate as many things as I can to numbers, to try and help me remember.
Ok, what was I saying?
Oh yeah. a couple of points to share.
1) On the question of whether divers enjoy the same benefits as people in the HBO chambers? The answer is no. They don't breath pure oxygen but rather a mix of gases.
2) It is recommended that you take vitamin E, 400 mg, after you exit the chamber each day when you are undergoing treatment.
3) I think I touched on this before but it makes a big difference when you eat something like fruit within 30 minutes after exiting the chamber. Think of it as being akin to hypoglycemia, or low blood sugar, when you exit the chamber.
4) If you want to subscribe to this blog, so it arrives in your email box directly and you don't have to come to the webpage to read it, just go to the bottom of the page where it says "SUBSCRIBE TO POSTS (ATOM)"
5) If you would like to leave a comment about the blog, please feel free to do so.
6) If you have a question about CRPS, or a question about HBO, you can drop me an email by sending it to firstname.lastname@example.org
7) If you are a current or past HBO patient with CRPS and would like to share your experience, send your comments either to the blog, comments section, or email them to me.
8) If you haven't hugged your loved one today, please do so now.
(Petra wanted me to throw that last one in there)
Someone who happened by the blog was unfamiliar with CRPS and asked me what it was like, what it felt like. We have an answer to that on the RSDHope website; WHAT DOES RSD/CRPS FEEL LIKE?
So how was my HBO treatment yesterday and today and how am I feeling?
I feel I am progressing. I can definitely feel the ups and downs of the treatment. Ok, I couldn't help that. I can though feel my pain get worse some days and a little better others. Yesterday was a better day than today. Today my feet have been burning a lot, throbbing is higher.
It is much more difficult to track a patient such as myself because my CRPS is full body. The same held true when I had the low-dose ketamine infusion. When you have patients who have CRPS in just one limb it is far easier to track the progress of a treatment, compare the "bad" limb to the healthy ones, feel it getting better/worse, etc.
When you have it full body you can have one part of your body feel a little better one day and a different part feel worse on the same day. It is frustrating not only for the patient but also for the treating physician.
But I am in this for the long haul and I know that there will be ups and downs along the way, especially during the first couple of weeks. We are projecting 20 treatments of 90 minutes each. So far I have had 8. So I have a long way to go.
What questions do you guys have?
Tuesday, July 8, 2008
OK GUYS, I have the information I promised you regarding the differences between the HARD-SDIED HYPERBARIC CHAMBERS used in most hospitals and clinics and the SOFT-SIDED CHAMBERS that many have seen advertised on TV and elsewhere.
There are many differences and some of them are significant, others concern severe safety issues, and still others deal with the effectiveness of the different units.
I have added a new article to the American RSDHope website regarding this issue specifically with a lot of help from a wonderful website put together by Healing Chambers International (see link below).
Some of the quotes from the article include;
1) Soft-sided chambers do not provide the same benefit as hard-sided chambers.
2) Soft-sided chambers cannot re-grow bone and tissue in severely damaged areas of the body, whereas hard-sided chambers can.
3) Treatment provided in a hard-sided chamber is supported by thousands of clinical studies which validate healing; soft-sided chambers cannot provide the same validation.
4) Hard-sided chambers are designed to go to pressures that heal. Soft-sided chambers are designed to treat divers and mountain climbers en route to a hard-sided chamber.
5) Hard-sided chambers kill bacteria, soft-sided promote bacteria growth.
There is a great deal more information regarding where and how the soft-sided chambers are allowed and supposed to be sold, and what for. There is also extensive information regarding the differences in pressures as well as some pictures and graphs that are very informative.
I was floored by the differences in cost, the cost of being treated at a clinic or hospital that uses the hard-sided units is sometimes covered by insurance, although not currently for CRPS in all places. There have been a few patients I have talked to who were able to talk their insurance carrier into it and we listed an article where a company was forced to pay for it. But for many other diseases/ailments it is covered.
Not so for the soft-sided chambers, there can even be serious consequences involved as noted in the article regarding that.
It is a fabulous article and I strongly encourage you to read it. The safety issues were of particular interest to me, besides of course the facts regarding what it could or could not heal. If the soft-sided units cannot even descend to standard treatment depth for diseases such as ours, and most others, why even consider it?
I am not saying there are no benefits at all from them. I have heard from some people who say they have been helped by the. It just doesn't seem, from this article and others, that the evidence backs up is there to substantiate such claims. I leave these things to the experts though. I am just providing the information for you to decide for yourself.
You can read the article by visiting the American RSDHope website and going to HYPERBARIC OXYGEN CHAMBERS - HARD SIDE OR SOFT-SIDE?
If you would like to visit the website where the original article came from and where you can find more information, visit -
HEALING CHAMBERS INTERNATIONAL - page of the Healing Chambers website that discusses the differences between the two types of chambers.
BTW, someone wrote to me and asked my if HBO is approved by the FDA for treating CRPS how can it not be covered by insurance? Isn't it the same thing?
It is the same as with other treatments such as the low-dose ketamine infusion. It has received FDA approval but isn't covered by insurance. basically this means that the FDA has decided the procedure is safe and that it is effective for the disease specified. It is then up to the insurance companies whether or not to approve the treatment for payment. There is often a lag between the two unfortunately.
I often wish that whoever decides these things could just sit down with patients like us, maybe spend a week living with us, learning what we deal with every day and then watch us go through such a procedure and see the difference it makes in our lives. Then compare the cost of the procedure versus the years on end cost of medications, therapy, etc. coupled with the agony of our daily lives. If the first point doesn't convince them maybe the second point will.
If only ...
That wish comes right after my wish for a machine that allows patient's to "plug" their Doctors into their bodies when they walk into their offices when they come in for their appointment. To allow the Dr to truly "feel" the patient's pain. How many of them do you think would refuse the pain prescriptions then? After they picked themselves off the floor and pulled themselves together of course. My guess is you would see a 90% drop in the "it's all in your head" diagnosis. Instead it would be "Holy cow! How do you live with that everyday?!"
Today was another good day in the chamber for me. We zipped down to 45 feet, it has gotten so easy for me. The first few days I had to do a lot of the "holding my nose and puffing out my cheeks" thing as I descended to the treatment depth. Now, it only takes me a few of them. I guess that is what happens to everyone. I could probably go diving, when I am done with this, for real. I would have to learn a lot I am sure about the various instrumentality but I would have learned part of it with the pressure.
I wonder if divers benefit from breathing oxygen under pressure when they dive?
I will find out and get back to me.
On another and last note. I have made sure to eat apple slices right after getting out of the chamber this week and have not had a headache! As I discussed yesterday, food makes a huge difference in our disease and especially when we are undergoing a treatment, and even more so a treatment that wipes you out.
Take care guys, see you tomorrow.
Monday, July 7, 2008
This one will be fairly short but tomorrow I have a couple more articles to share. We had a very bad thunderstorm all day here so I was unable to get on the internet for much of the day. Now it is after 10 pm and that is the time of day when my body gives out. I know that some CRPs patients stay up very late at night and get up very late in the morning, and for others, they go to bed early and get up early, and probably some go to bed early, get up late, or go to bed late and get up early. Now I am starting to sound like a bad Dr Seuss book;
I will not go to bed at eight,
I will not go to be too late.
I will not go, you cannot force me,
I will not go, so just divorce me!
Ok, so I'm no Dr Seuss.
I was thrilled to get back in the chamber this morning. After spending three days without it, after four straight days of HBOT, I can definitely say it was helping, it is helping already. How much it will end up helping I don't know, we won't know until we are done and maybe not for weeks or maybe months afterwards. From everything I have read, some patients keep improving after they stop treatments, sometimes weeks or months later. I am all for any treatment that you can say that about!
My vision was giving me a lot of trouble over the weekend, a lot of blurriness. After my treatment today it was a lot less blurry. I haven't noticed any improvement in the actual vision in the bad eye (my left eye is 20/450) but the blurriness was much less. I am going to look into going to an opthamologist in the coming week if possible because I want to track changes in the vision.
I made sure to eat within 30 minutes after getting out of the chamber today and it helped with regards to the headaches. I had none today and we didn't change the depth, I went to about 44 feet again.
One thing I wanted to mention. Wherever you go for treatment, (of course I highly recommend Dr Spiegels' facility) make sure you thoroughly check out the safety procedure's; everything from how they put the place together to what happens when there is a power outage to the training of the people on the staff. You are placing your life in these people's hands while you are in the chamber and you need to know these things. The facility should have no problem answering any of these questions.
At Dr Spiegel's facility they have been eager to share this information with me, proud of the safety protocols, the way the facility was built, and especially eager to share the training involved. I visited one facility, which shall remain nameless, and they let a friend of mine "test" one of the chambers without even checking what he had in his pockets! Now granted, there was no One-Ring-to-control-them-all in his pocketses, but they don't know what he had in there.
Anyway, like any other procedure you have make sure you thoroughly investigate everything about it and the people involved. This is one of those instances where you get what you pay for.
I am bummed about one thing, all this diving down here and I never get to see any fish :(
I mentioned this to someone in the lobby of the clinic and she looked at me like I had lost my marbles.
Maybe I have. I have been accused of worse.
Tomorrow, I will be sharing the information on home units versus hard-sided units as well as a few quotes from other patients who are going through the treatment and/or have gone through it recently.
Thank you to everyone who has sent me emails of encouragement and who have mentioned they are praying for me. I appreciate it.
Sunday, July 6, 2008
Good afternoon everyone! Well, as you can probably figure out I didn't just go lie down after my last entry and come right back. I laid down for a while, and then laid down some more, and then woke up at 6 am! It was great! It was weird, sleeping that much, but it was great! I am not used to it and it was definitely due to the HBO.
I spent the next day, July 4th, at the beach with friends. For all of my friends up north where the water is barely 65 degree's; it was a little rough. I had to force myself to get into the 87 degree gulf coast water, force myself to try and enjoy floating in the water and watching the dolphins cavorting around the sailboats and jet-ski's just off shore, to try and enjoy the perfect 90 degree, sunny, not-a-cloud-in-the-sky day. But as I remembered all of those cold days spent up north, all of those cold mornings having to walk through the newly fallen snow just to get to my car, how the below zero weather caused my CRPS pain to shoot sky-high, somehow I managed to enjoy myself.
The warm weather, the sunny days, and the warm water have all been wonderful for my CRPS, which was one of the main reasons we moved down to Florida from Maine. I am very grateful to my better half, Petra, for making the move for those reasons.
Ok, so what have the last few days been like without HBO? Because Friday was a holiday the clinic was closed so after four days of treatment I have taken three days off. I will resume my treatment, my fifth day of therapy, tomorrow, July 7th.
If you had asked me on Thursday, as some did, if I had begun to feel any pain relief I would have told you that I didn't think that there was any positive forward movement yet but I did notice there was some backward movement; which isn't unusual. I have had some issues with a little eye blurriness, and a little bit of a headache in the afternoon a couple of days but neither thing last long and neither are overly aggravating. Of course the treatment does make you fairly tired as well.
However! On Friday night I felt my pain increase and then again on Saturday and today. I know it wasn't due to being at the beach on Friday because I was very careful to not over-do, something I have a tendency to do. I also had a few people watching over me to ensure that didn't happen as well. And we went home early rather than stay and watch the fireworks because I knew if I stayed that I would be far too exhausted by the time we got home.
So that only leaves one conclusion; the HBO must have started to give me some relief and the lack of HBO on Friday, Saturday, and Sunday! So while some people might be a little upset with feeling that additional pain these last few days I was thrilled with it because it told me that the HBO was working! How far we will be able to go with it, how much relief I will eventually get I don't know. But I am excited about the possibilities!
Now on to other business.
I haven't forgotten about the information I was getting to answer the question about the difference between the blow up units and the hard-sided units that most clinics use. I had hoped to have it by today but it wasn't sent to me. I will try and get it tomorrow.
I do have a new article to share with you that answers a very important question; what about stopping the treatment early? Before the treatment series is scheduled to end? For instance, if you are set up at the clinic in the typical 20 or 30 treatment cycle, are there any possible problems with suddenly stopping after 10 or 15?
Some may ask "Why would you stop in the first place?"
Well, I happen to have the answer to that. Excellent question! Thanks for playing our game. We have some wonderful parting gifts for you.
What happens, as I may have discussed before, is that for many patient's their pain actually worsens before it gets better. For yet others, their pain level will go up and down during their treatment, especially in the beginning. Unfortunately, some patients get to these points, these changes, and give up. They feel the HBOT isn't working and think, why put myself through any more of this?
For those of you who are going through it now or who are considering it in the future, remember, we have to push through it. Finish the entire course of treatment. In some cases you may not see the entire positive results for weeks after you finish the therapy. Every session builds upon the last, and it is a long process.
It isn't the same thing as watching a cut/wound heal on your arm, where you can monitor its' progress, see the healing take place in front of you. CRPS and fibromyalgia healing involves healing our nervous system, healing the way our inner body functions. It took a lot of time for our sympathetic nervous system to get "screwed up" (technical medical terminology) , give it the time it needs to heal properly. After all, if you give up, what are you going to do? Just go home and do nothing? Why not just finish off the few weeks left of therapy instead?
So here is the article I promised. I know, a long way 'round. It is called "PERSONALITY CHANGE WITH HBOT" and you can read it just by clicking on it.
Something else I wanted to share, sorry for making this so long today, is a few tips to help make the after-effects of the HBO less likely to be a problem.
It is important to remember that your diet plays a key role in maintaining your health when you are in chronic pain. This is especially true when you are undergoing a treatment such as HBO. One of the best ways to help with your diet is to follow the examples given in Doctor Hooshmand's, CHRONIC PAIN DIET, AKA, THE FOUR F'S DIET . You can read about the basics on our website and then click through to get to Dr Hooshmand's site where he explains not only what the Four F's are but also what foods to avoid.
Unfortunately the Four F's are not French Fries and deep-Fried Twinkies, and Fudge!
Dr Hooshmand explains these in more depth but they are;
Fresh Fish, Fresh Fruit, Fowl, and Fresh Vegetables. He gives a list of foods to be avoided and a list of foods that are allowed.
While many CRPS patients tend to have foods that they find increase or decrease their pain, many will be surprised to learn how accurate this list is. The foods-to-be-avoided list, are foods that tend to increase your pain.
Lastly, I wanted to mention that when you are undergoing HBO Therapy, it helps if you remember to bring along some fruit because you need to eat right after your treatment, it is recommended that you eat within 30 minutes of exiting the chamber, at least an apple or something along those lines. Keep up a diet high in protein, low-carbs, and low-fat.
You should also make sure not to drink caffeine four or five hours before treatment and it is even recommended to avoid caffeine altogether if possible, according to the chronic pain diet!
You will notice a big difference!
I will try to continue to pass on tips as the various Drs and Techs I talk with pass them on to me.
I love hearing from everyone else who is also going through the treatment, keep the emails coming. I may not always be able to answer but I always read them.