I have now had two steroid injections into the piriformis. The first one was great and I felt normal for a short time. The second time, the radiologist managed to hit the sciatic nerve and that was a bit disastrous. I completely lost any feeling in my right leg. I couldn’t believe that the hospital let me go. They just told me  to be careful. But the leg wouldn’t take any weight and it felt like my knee was going to bend backwards…my husband had to get me out of the car and to the bottom of the stairs and he hurt his shoulder. I had to climb up the stairs on my bum and for the rest of the day, I had to ask for help to move. It was unbelievable.

The next morning there was still parts of my foot that were “frozen”. And the sciatic nerve was really irritated. Totally different. It took about a week for the irritation to go away but the piriformis is still hinkey although it is better. On Sunday Oct 11 the muscle went into spasm and would not stop. Horrible. The next day, the leg was so fatigued I couldn’t walk around the block. It’s coming and going which I’m grateful for. Before it was spasming all the time.

I saw Dr. Devonshire on Friday and she agreed that it was time to do the Botox. At least there will be a more lasting effect. I asked her what would happen if the nerve got hit again and she said that it would stop the pain fibers which is all right by me.

I have had tremendous relief from the lift in my shoe. I also had the left shoe built up all along the bottom. It is unbelievable what a difference this has made. Physio said that my leg length discrepancy was only seen on standing. Anyway, the lift puts me back in a more neutral alignment. That translates into less pain. All of a sudden I am standing straight. It’s so strange. I have exercises to do to strengthen the surrounding muscles (first stretched the piriformis but now it’s good). And we’re trying to move the ribs separate from the hips. I have been locked for a long, long time so even being able to do the side bend and move the ribs separately is a huge big deal. I”m just watching the end ranges of movement. Also strengthening proximal hamstrings. Amazing how those little things are so hard to do. One day I expect to get back on that reformer. I’m also doing the elliptical everyday or walking.

I had someone ask me if I tried a TENS unit for pain management. It’s worth a try so I told her I would post the info. Back in 1994 I bought a TENS (transcutaneous electrical nerve stimulation) unit. You get one or two leads that glue or stick onto the area of pain. The opposite end goes into the unit control mechanism. I paid $600 for my unit and now they are around $150. I had two leads which gives you 4 pads. I would put them on the upper and lower limits of where I felt pain. And then you can set the amplitude, strength, pulsing or not and depending on your unit – other controls. I think that they basically work by scrambling the pain signal to the brain. It might sound hokey but I was able to get off my anti inflammatories and continuing running using just the TENS unit.

The problem lies in allergic reactions to the glue that is used to stick the pads on. It’s a very common problem and the company, Medtronics, has gone into surgical implants. It didn’t take long for the allergy to get going and I got around it by using pads without glue and then taping them in place with paper tape. That worked very well but unfortunately, the unit wasn’t so effective this time.

And I have to tell you it only works while you are wearing it. And the leads can get caught in things plus you always have the control unit and what to do with it. No dresses. You have to have something to attach the unit to.

Anyway, it does work for some people and it’s drug free. Most physio therapists will have a unit so you can try it out with their guidance and see if you are one of the lucky ones.

I feel quite fortunate to be able to say that even though the piriformis is still inflammed, I’m able to manage things. It is taking a little bit to get used to the new drug regime – cymbalta and nortriptyline – but I am getting  used to it. I really felt out of it for the first 5 weeks. The doctor told me to play around with the timing and I think that I have found a balance. I take the cymbalta at 1:30PM instead of at bedtime. I had a terrible time with my gut and pain which is what prompted the desire to change. That has been resolved and I am also no longer sleeping so much. I awake on my own between 6 and 7 which is my normal time.

The only thing that continues to be a problem is the leg cramps at night. The doctor said to take as little as was effective but I often find that 200mg doesn’t do the trick. It’s interesting  how close to the surface it is.

The Neurophysiotherapist is Robert Johnson. I’m really lucky that he is still practicing in North Vancouver as he has moved to the Island. He is here only once a week. I was very encouraged by our first meeting and his observations and suggestions. Right now I have a 1/2 inch lift in my left running shoe to bring the focus onto that side. I don’t have a leg length discrepancy but it looks like it when I stand. It feels quite weird and can be painful but not overly so.

My exercise is to stand on one leg for 30 seconds at a time. Do both legs, bring the leg that is lifted to hip height. It’s interesting how hard that can be on the muscles. I do that 3 times on each leg, 30 seconds each time, three times in a day. I wear the shoes for the day. I hate wearing shoes.

Robert’s site is www.neurophysio.ca and he can be reached at info@neurophysio.ca

I must say that this is the first time that I am actually hopeful that I won’t have to live a life of pain and might get out of this. I filed for disability and that was quite difficult to do. It’s like admitting you can’t do things and you don’t expect to. The doctor said it’s only for four years and then I guess you get reassessed. Still…not great.

How to Fix Piriformis Syndrome

It’s interesting how the body heals. It’s been about a year since my last surgery and until a month ago I was far from normal. After a lot of searching, going from doctor to doctor a neurologist found that my piriformis was really tight. Dr. Devonshire in North Vancouver tried to give me a steroid injection herself – I do not advice this as the muscle is really deep and altogether too small compared to the other muscles in the area.

Long and short is that I had a steroid injection using a CT scanner to find the exact location and after a few days I actually felt normal…unbelievable from my perspective.

So now it’s coming back and it’s only been a few weeks since that injection. Dr. Devonshire is making another appointment for a repeat injection and has referred me to a neurophysiotherapist. The idea is to get the piriformis to relax on its own. She gave me a couple of stretches and these ones on YouTube are also good.

So I’m in the midst of weaning down off the MS Contin, going from 60mg twice a day to 45mg twice a day. That for a week or more and then down to 30mg, etc

I have had the runs a couple of times during the two weeks I’ve been on Nortriptyline and we are separating the Cymbalta to take in the morning now and the Nortyptyline at night to see if that helps.

Keep in mind that this stretch isn’t meant to do after your back surgery. This is from a problem that developed because of the surgery.

I find it very interesting to see the pain managed so successfully with non-narcotic drugs. I’ve been in pain for years supposedly from my arthritis although my case is quite complicated. But isn’t everyone’s case different and complicated in other ways?

NSAIDs (non-steroidal anti-inflammatories) helped the pain but this was far from complete. And these types of drugs are not meant to be taken forever. The ideal case is that you get an acute inflammation from something eg spraining your ankle and you go on the NSAIDs for 10 days to aid with the healing.  Arthritis, however, is not an acute situation but rather is chronic. People go on the NSAIDs because of the pain and the drugs help to different degrees.Unless the patient is persistent about their level of pain, it often stops here. And the patients’ don’t know what is “normal” pain from arthritis. The one thing that they do know is they can’t manage many “normal” daily tasks and this can impact their quality of life (QOL) to varying degrees.

I know that we all have aches and pains daily but this is different. I’m talking about pain that interrupts activity and prevents movement. Sometimes I wonder if I’m not talking about two different things. But because they are linked together you can’t treat one without it having an effect on the other. So we are talking about secondary things that happen as a result of the arthritis. For example, uneven disc degeneration has caused me to have scoliosis. Without the arthritis I wouldn’t have scoliosis. And that’s just one example.

Osteoporosis can definitely affect the arthritis and the pain. Bone pain isn’t nice. And what else happens? So you see what I meant about complicated pictures…it can go around and around. In my case, they can’t do anything surgical for the scoliosis because the osteoporosis has made my bones too porous and cages or rods get attached to that bone. Imagine it breaking off because the bone isn’t strong enough.

I guess what I’m trying to say is that we are all complicated. And if there is pain and a reduced QOL, something  needs to do whatever we can to help the patients (us). Speaking as a professional guinea pig, I can tell you it’s not much fun trying out the different drugs to see what works and what doesn’t. Keep in mind as long as you are unsuccessful, you’re also in pain. The doctors are too afraid of addiction to use narcotic. That’s crazy. If that is what it takes to improve QOL, then do it. But I can also tell you that that the slow release morphine does help but it is also incomplete. And the worst side effect is constipation. That might not sound like much but to have constant constipation means that you are also uncomfortable, taking lactulose or fruitlax and trying to empty your bowels. You get gripping and cramping and in the end, it may not work totally either.

What I’m trying to say is if you end up in this kind of situation where there are side effects and pain relief is not complete, that you can’t stop there. Pain is a really big issue. It affects your sleep which affects your immune system and your sensitivity to pain. It is a vicious cycle. So don’t settle for this kind of life. You have to give it all you have to get the specialists moving in the right direction with you. It is not easy to have to keep pushing but that is exactly what you have to do.

Before I saw Dr. Devonshire I was talking through gritted teeth because I was in so much pain. I was dead tired all the time and depressed. What kind of life is that? Think about it. It could be your mother or sister or even you. It’s a pretty poor QOL.

The first thing Dr. D did was look at the medications that I was on. Clearly a cocktail that was working to some degree at one point in time but ineffective now. And reluctance on my part to change only because of the additional side effects. So I was on Arthrotec 75mg (NSAID) twice a day, Nexium because the NSAID hurt my gut, MS Contin 60mg twice a day (slow release morphine for pain) and domperidone – a drug to help the motility of the gut to help prevent the constipation. At night I was on trazodone 100mg and clonazepam 2mg for periodic limb movement disorder and to help me sleep. And quinine for the night leg cramps. That was the only thing that was really working.

From there Dr D started with adding Cymbalta (60mg at bedtime). This is an antidepressant that has been approved in the US for firbromyalgia (but not in Canada). She said it was fairly successful at helping nerve pain. Well, I wrote a post about how effective it was. I could not believe the difference inside of 10 days there was a huge improvement. The next thing we did was change the trazodone which is good for sleep to nortriptyline (50mg) which is good for sleep and for pain. Again inside of a week I noticed an improvement. I had trouble sleeping the first two nights but was getting a much better quality of sleep after that. From there she wanted to do a steroid injection into the piriformis muscle because she felt it was compressing the sciatic nerve. She couldn’t reach the deep muscle in the office and last Friday I had the injection done with the aid of a CT scanner. There’s a post about that. Within 3 days I was pain free. And it’s 8 days ago now and I’m still pain free.

I can’t believe it. I had to stop the NSAIDs for the injection and didn’t notice anything from stopping. The doctor said to stay off them. I could stop the nexium because the offending agent was gone as well as stopping the domperidone because the gut motility seemed to be improving on its own. So that’s three prescriptions gone. And I really believe I will be able to stop the slow acting morphine.

I feel great except I have side effects from the new drugs. I know they’ll go away after being on the drugs for awhile. I’m scared to death to do anything because I don’t want a flare up. I have an appointment with Dr. D on Tuesday for an steroid injection into another fibromyalgia trigger point that gives me headaches all the time. I can ask about getting back on track physically when I see her for this. And I am able to walk abut 1 hour and not feel like I have to sit or stretch out as soon as I get home.

So the whole point of this is to tell you not to give up. Don’t settle for the pain and everything that come with it. Fortunately there are new drugs and new combinations being looked into all the time. Often it is the combination that works when each drug alone might not. Don’t become complacent. I know it’s tough. Your life is one big doctor’s appointment. But there is hope. I guess that is the message. There is hope and possibly a way out of the dark.

Well, I can hardly believe the difference between now and the last post. Let me start off by saying that the pain is well under control. In fact, most of the time during the past week I have not had any pain. That’s a show stopper.

Two weeks ago, I had to stop taking my Arthrotec (an antiinflammatory) because I was having the steroid injection into the piriformis muscle. I began taking Cymbalta several weeks prior to that. I’ve had to stop the NSAIDS before and couldn’t wait until the time I could start them again because of the increase in pain. Believe it or not, I didn’t even notice the difference. I was stunned. After a couple of days I thought the inflammation would come back and the pain would get worse. Nada. And now it’s been two weeks and I haven’t taken a single antiinflammatory.

Needless to say I’m delighted. The NSAIDs are hard on your stomach, your liver and who knows what else. I’ve been taking them since 1992. The only difference I notice is that my stomach is sore. I think that the NSAIDs probably did irritate the gut but they also masked the pain so it’s a really good thing to be off of them.

So on Friday, they gave me the steroid injection. As usual, the process was interesting but too bad I’m the subject. They insert a small tube into the general area of the piriformis (tube is not the right word because that’s too big- it’s just a little bigger than a syringe). They determine that by doing X-rays with the CT scanner. Once the tube is in place, they start moving it until it is exactly in the piriformis. I’m guessing that this is how the botox injections will be done as well. I know at one point I felt an electric shock go through my body and naturally jerked. Not suppoed to move. Hah! That is pure reflex. Anyway, they were really close to the spot then, one more tiny move and then they inject the steroid into the muscle through the tube.
For a couple of days, I didn’t notice any difference. Just sore in the area. But by the third day I felt like a new person. Totally unbelievable. There is no hip pain at all and I can almost walk normally. I’m waiting for someone to burst the bubble. I see the neurologist next week and I’ll ask her what I can do. I’m walking about one hour now (really slowly but still moving forward). I feel like I could do more but I’m afraid to hurt something.

So, Tuesday she is going to give me an injection into another one of the trigger points of fibromyalgia. Maybe those headaches will go away.

So the picture is looking better and better. It was time last week to change from the trazodone at night to nortriptyline. They started me at a low dosage but I gotta say, it’s borderline too much. I’m sleeping like a baby and have trouble waking up. I’m not too worried about it because I haven’t slept well in years so I guess I’ll enjoy it. The nortriptyline is supposed to help with both the pain and the sleeping while the trazodone was just for sleeping.

So I feel great except I think I have a little cold or something. It could be the drugs because I feel like I have a head full of cotton. I can still study and stuff but first thing in the morning I’m not the quickest person around. Hopefully that will go away as I get used to the drugs. The sore throat and cough should disappear soon, I hope although I am in contact with people that have colds so it’s not a big surprise that I get one.

BTW- I’m still taking the quinine for the night cramps in my legs and feet. I’ve tried to take 200mg because less is more in this  case but then I get woken up in the middle of the night with cramps starting in my feet. I take the other 100mg then and am usually okay. But I gave up a little while ago and just took the higher dose capsules. My husband was taking the 200mg capsules and splitting them into 2 -100mg capsules. We have the capsules around because we have a sick cat and we crush her pills up and put them into 2 capsules. Anyway, now that I’m on the nortriptyline I think I’ll try the 200mg again. Like I said, less is more. I worry about the drug interactions. And the quinine interacts with the cymbalta which interacts with the nortriptyline. Scary.

So this is the most positive news I’ve had in a long time. I’m currently still taking the slow-release morphine (60mg twice a day) but I’m wondering if I can’t get off that as well. Wouldn’t that be super?

Next week I’m supposed to start weaning of the clonazepam so hopefully that won’t upset the apple cart too much.

I’ve stuck it out at Weight Watchers and have lost 12 lb. I have 0.6 lb to go and then I’ll be at the weight I was before my first surgery in June 2007. Because my stomach in now sore, I find that eating a little something every few hours is the best. No overloads and keeping the stomach acid away from the stomach.

I’ll post again early next week with more news.

Viddler News about the cymbalta and steroid injection coming up. The Cymbalta has really improved the pain picture after only 3 weeks. On August 25 we’re supposed to be eliminating the trazodone which was upped to 150mg and adding nortryptiline…there’s a big interaction btwn that and the cymbalta that I want to talk to the doctor about. At the same time, I’m supposed to start weaning off the clonazepam. I get so mad when I think about it. The Pain Clinic at St. Paul’s upped the dosage from 1.5mg to 2.0mg in 2007. And now I learn how it cuts out parts of your memory. Geez…what were they thinking? The interesting part is I haven’t seen that anywhere on the net. But my neurologist says they are seeing some really weird things going on with the drug.

Just an update on how things are going since my last video which seems like years ago.

http://www.viddler.com/explore/darmorrow/videos/41/

Take care. Stay Positive!
Darlene

Yesterday, I felt terrific. It gave me new hope. The cymbalta is definitely working. Each day it has been a little better and then yesterday, I almost felt normal. Well you know how that works.

I did a nice walk – managed to go a little faster without trying. I was out there for about 30 minutes. Nice. Sunshine. Walking straighter. I really did feel better. By the time I got home, Bill was waiting to go to the beach where the Harmony Art Festival is taking place. I had thought we were going on Sunday or I wouldn’t have done my walk. Whoops. I didn’t say anything and without taking a little rest, we went to the beach. We were there about two hours. It was fun to walk around and see the different craft booths and the gallery. Outside they were doing art demos and Alan Wylie was there. Bill loves his stuff so he sat on a log and watched. I tried to sit next to him but after five minutes I knew it wasn’t a good idea. OK. I went to lawn and sat in one of the chairs.

Bill could tell I was reaching my limit but he wanted to see the gallery. He found a book there by an artist he would like to take a course in. Then we walked around the lawn area, found the schedule for the art demos and just wandered. I think I did something then. I was a bit of a tough go on the lawn, not even ground and there was a dip that I didn´t see. Darn. I could feel something in my back but it wasn’t sore immediately after.

We went home after that and rested. Sat down in my zero gravity chair with some heat on – doing some Spanish – and when I got up to start dinner, after 5 minutes I was done. I don’t know for sure what I did but I felt a lot of pain. I didn’t want to take anything extra for pain – just hoping that it would go away… nope.

The rest of the evening I couldn’t sit and had to lie on the couch. I finally gave up and went to bed to stretch out and watch TV. I had read that you should take your cymbalta at the same time everyday and I hadn’t been paying any attention. I took it at 7PM and a half an hour later I felt pressure in the back of my eyes. I looked up side effects of cymbalta but couldn’t find any mention of it. This morning I was talking to my sister and she’s going to ask her husband, who is a physician.

I checked out drug interactions on drugs.com, a great place for really good info, and cymbalta has interactions with just about every medication I’m on. They said it wasn’t a reason to stop but cautionary and to watch for increased symptoms. So the Arthrotec I’m has something for your stomach (interaction with that so if I notice stomach aches that should be looked into) and the NSAID in the arthrotec can cause blood thinning and liver problems. The quinine for the leg cramps at night interacts, and so does the trazodone and clonazepam…the only other things I’m on is the MS Contin which can lead to increase mental confusion and more sleepiness. The stomach medicine, prevasid also has interactions – it can decrease the effects of the cymbalta. Talk about a combination of things waiting to happen. And the neurologist wants to take me off the trazodone next month and put me on noritryptiline because it helps with both sleep and pain. That also interacts. This is fine balancing point. I feel like adding one more thing might tip it over…

Well, there you go. The Devil or the deep blue sea. I do feel better and haven’t had any intensified reactions except the pressure at the back of my eyes. It’s only my second week – just finishing that- so who knows.

I read that in the US cymbalta is licensed for use for fibromyalgia as well as diabetic neuropathy. They also said that most of these patients feel a difference by the end of a week which I did. Here’s hoping it keeps helping and not hurting anything. I hope that a day of rest today will fix me up like new.

BTW- I heard from Dr. B in Queretaro and he thinks I need a pain specialist but he said he would think about a way that he might be able to help me. He’s really a nice man.

Well, there is no shortage of changes, no shortage of frustrations and sometimes no shortage of hope. The most recent news is difficult to get through. The physicians are getting risky with their suggested treatments and I’m really having to decide just how much I am willing to gamble. I feel, after the hyperthermia trial in Holland, that I am done with the experiments.

Now I am at steroid injections and am stopping that unless they are done radiographically. I was a neurologist’s office last week and she gave me 6 injections trying to hit the piriformis muscle. I feel terrible now and over the last week it’s been hell. I was supposed to go today for a shot into my neck and begged off. She’s made an appointment to do a repeat one radiographically but this being Canada I have to wait a couple of months…She wants to do botox injections into the muscles. I am totally uncomfortable with that and want a second opinion.

Fortunately, I see Dr. Badhi sometime in September. He is a rheumotologist.

Dr. Devonshire spent the first session with me telling me I had fibromyalgia and I had to change my medications, etc. Then she wrote a 3 page letter to my family doc and never even mentioned FM.  I am on the trazodone and have gone from 100mg-150mg. If that doesn’t help with the sleeping she wants me to try noritrytiline and come off the trazodone.

I have to come off the clonazepam because she says it does weird things to memory. Like whole pieces can be missing. I thought that was the pain. But I have to come off the 2 mg at night over the course of a year by about 1/4mg a month or less. I’ve been on this drug through the sleep disorders clinic for 15 years and it all scares me to death.

She has also added Cymbalta 60mg for pain. I’m supposed to give it a month. More drugs that do weird things to the brain.

The fentanyl patches stopped working all of a sudden and I am back on 60mg MS Contin twice a day.

Last night the leg cramps came back for the first time since I saw Dr. Barrinag…it was terrible. All this from messing around and getting poked repeatedly.

My friends in San Miguel, bless them, are helping me out. I’ve written a letter to the good doctor in Queretaro to get his opinion and see  if he thinks he can help me.

I’ve phoned the neurosurgeon here and he’s ordering some more imagining. I do not want more surgery but I need to know what I am up against.

I hate it when I sound whiny. The whole situation is going downhill again and it’s hard to keep fighting back. I have a new Spanish teacher coming to the house tomorrow. Maybe that will take my mind off the pain.

I’m able to walk a little. Can only stretch the hamstrings right now. Anything else throws the back into spasm. No matwork. But the quinine has taken away my appetite and I have managed to lose 12 pounds. 4 to go.

Good luck to everyone else. I hope that things go better and just as I need to remember, a positive attitude also takes us farther.

Besos

Dar