I was talking with a colleague recently about balance and maintaining your health when you have chronic pain, and invited her to write her thoughts on the subject. This is by Dafny, a PhD psychology resident. Do her struggles sound familiar to you? I invite readers to leave your comments below.
Dafny writes: I often struggle with the question of balance in coping with my chronic pain condition, Complex Regional Pain Syndrome (CRPS). For 1 ½ years I was in remission, when I didn’t work at a steady job – I slept, ate, did physical therapy, made jewelry, and was off most medications. I often wonder, was this a type of resetting of my system, like the idea of a ketamine coma, but in a natural way?
I have CRPS in my leg from knee surgery, when a nerve block was not used (even though this was my request – another separate topic). I originally tore the ligament skiing. After PT, I was still experiencing giving way of the knee, so I decided to have the knee surgically repaired. The dangerous thought of falling at a subway station was enough to motivate me to seek surgery. The knee was more stable, but the pain was problematic, so I decided to have surgery to repair the knee again. Little did I know that this surgery would change my life forever, causing full-blown CRPS.
Despite this occurring in my second year of graduate school, I persevered head-strong through experiences of discrimination, taking some partial time off for a pain program, being angry, depressed, somewhat accepting, being patient, determined, trying to balance, and jumping through each ring that was thrown at me. I made it through, but constantly continue to struggle with the issue of balance.
To be able to work, I had to get on more medication, it took me more time to accomplish things, more strain on my relationships, and less time for housework, relaxation, and sleep.
“This time it’ll be different,” I say to myself. I’m on fewer medications, I’ll start off working slowly, building my way up to full-time, and not even full-time, if I find that’s what keeps my health stable.
A month into my new job, I experience a flair. I know what to do. I’ve been through this before and I take time off to get the medical treatment I need, and work the other day that I usually have off. “I’m lucky this way,” I say to myself, “I have some flexibility within my job for this.” I continue along, but add physical therapy a couple times a week to work on a new area of muscle tightness that I’ve not experienced before.
My mind questions, “Why now is this spreading? Is it because I’m working again? What’s the right balance?” I seek treatment for nerve blocks which have been helpful for me. “Lucky to have something that I respond to,” I say to myself. “Many people don’t respond to nerve blocks.” I have a great response to the nerve block targeting the calf area—the new area of spread. With physical therapy, it lasts for about 1 ½ weeks. I work hard in physical therapy, but mechanical knee pain sets in, limiting my physical therapy. Again, my mind questions, “What’s the right balance? How much physical therapy do I do to keep the muscles from wasting, but yet keep the mechanical knee pain in check.” I seek advice from an orthopedist who tries an injection to try to calm the mechanical nerve pain.
Overall, I try to keep myself positive and tell myself about the nerve block, “that’s okay, I know the effects of nerve blocks can be cumulative.” I schedule another one. This time, the block for the upper leg works great (when I didn’t even realize how much pain it was causing until it was relieved). However, the calf nerve block only half works. The disappointment sets in, but I try to remain calm and positive, telling myself, “I will just try it again.”
Now another balance question sets in, “how many nerve blocks to try? Is there a point when it’ll be too much.” I work on stretching, some exercise, muscle relaxing gels and creams, and I buy another moist heating pad. I’m determined to try to get back to remission, to keep my job, so that I can give back to others in the field that I’ve worked hard in.
My significant other tells me, “reduce your workload and get your health better.” “I’m trying to keep that balance,” I think. He says, “it’s not fair to me if we can’t do things on the weekends.” I know he’s been picking up the slack, cooking and doing laundry. I know I still have to keep up with my side of the relationship and come home earlier to cook more, and tidy my belongings (not my strong point). Again, it’s a continual balance.
Another balance issue I struggle with is the relaxation issue. When I stop, when I’m sitting in a chair, when I’m sitting in a car, when I’m trying to relax, I feel more pain. I’ve tried so many techniques to cope with this. I’ve tried to go inside the pain, to experience it, to say to myself “it’s okay to feel this,” to relax my spine and imagine blood flowing freely to the area, healing and calming. I’ve tried stretching. Sometimes stretching helps, sometimes stretching seems to tighten the muscles more, like a reflexive tightening arc. I’ve tried muscle rubs, creams, lidocaine patches, and heat.
I’m learning that this new area of spread is not the same as the old area that I’ve learned to cope with. I’m still trying to figure out how to best manage it, and that some things that worked for the old area don’t always work for this new area of spread.
I feel myself having to re-experience the stages of grief, and I’m still fighting to get back to the remission that I had. I continue to try to find the right balance of working, managing finances, managing relationships… continuing to ask what’s the right level of PT? how much sleep do I really need to maintain my health? how much is work stressing my health, versus the weather change or other issues?
How do we work with these struggles?
For many of us, being aware of and working on balance is a significant issue. It takes time. It takes energy. Often, more time, energy and effort that for those without pain. Thanks to Dafny for sharing her thoughts and challenges.
Readers, do you have similar questions as Dafny? How do you work on balance?
Grand Rounds, a medical blog carnival, is published this week at Crzegrl, Flight Nurse.
32 responses so far ↓
Jessica // Nov 11, 2009 at 11:41 am
Wow, thank you for this! This really hit home as I too have CRPS in my leg and am experiencing many of the same issues as Dafny. I also am a grad student and work and struggle with balancing everything. Some days I just need to shut down and not do anything to reset my day. This summer I took off work and school to concentrate on pt and procedures, but found that depression overtook me. I needed a purpose. So I think the spreading may be caused by stress, I am so much happier. It is very challenging to figure out what is best for me.
asma // Nov 11, 2009 at 11:56 am
Great article! I too am constantly struggling to find the right balance and just when I think that I ‘ve worked it out something changes so I’ve start all over again.
Tammy // Nov 11, 2009 at 4:51 pm
I could totally relate to Dafny. I wish I could say that I had no clue as to what she was talking about but I do know all too well. I have several auto immune diseases and connective tissue disorders among other things and I to have horrible chronic pain. I have lived with it and gone to school and worked with it most of my life. The last year I have been off of work (disabled) because everything got so so bad. I thought that having time off would help, but it seems that I have had a few good days but my bad flare days are still here(unfortunately). I do know that stress does make it worse for me. If only I could learn not to stress about things! I know is a joke. I wish Dafny all the best in her trek to remission and recovery as I do everyone else out there who is struggling with any kind of pain whatever it be.
God bless and good luck.
Tammy
Betsy Miller // Nov 12, 2009 at 12:46 am
You’re all tough ladies! It’s hard enough to balance life as it is, more so if you’re experiencing chronic pain.
It seems that we commonly assume resting to removal of pain, but in the case of Dafny and the other commenters, too much of it worsens the condition.
Esther // Nov 12, 2009 at 1:01 pm
I know this balancing dance with an unknown partner myself. I have fibromyalgia and chronic pain. I tell myself I have tricks to try and work with them as best I can.
My response to stress is probably part of the problem. It must take lots of energy out of me and then I’m on a downturn and have to take it easy.
Besides taking it easy, what other strategies does anyone have?
Esther // Nov 12, 2009 at 1:03 pm
http://healthskills.wordpress.com/2009/11/11/what-do-i-do-when-ive-had-enough-the-effect-of-emotions-on-self-regulation-chronic-pain/
This is an occupational therapist’s post.
Mike // Nov 13, 2009 at 2:58 pm
I can relate to Dafny,I struggle with the dreaded disease RSD for 15 years.I have it in my right hand and arm,shoulders,back,and both legs and feet.Every day is a struggle but with the help of God and Family I am getting by.It seems one day one part of the body feels good while the rest hurts like hell it is just a viscious cycle.
Bronnie Thompson // Nov 13, 2009 at 3:17 pm
Thanks for this post – as a PhD student myself, I completely get it! And thanks to Esther for the link back to my recent posts on self regulation. I’ve learned that regulating your response to stress requires energy – which is already depleted with chronic pain, and in turn influences mood. So I’m playing the Glad Game today – weather is lovely and I’m going out with the dog for a walk!
Sandy L // Nov 13, 2009 at 4:53 pm
I hear this loud and clear! I also have RSD/CRPS from a cut nerve in my foot. I now have it in my right foot and leg, my right lower back and my left forearm. Go figure! I gave up on nerve blocks when they started lasting less than a few days. There is only so much we can tolerate. God Bless!
Jessica // Nov 13, 2009 at 5:09 pm
I think Dafny summed up what I have been struggling with for the last 4 years. Each time I try to go back to work full time, I experience flair ups. Nerve blocks, PT, massage therapy and medicinal creams help. But each time I am in remission and try to return to some of my passions, skiing, snowshoeing, cycling, and hiking, I wind up in a flair up again. It has become what I refer to as the RSD roller coaster!! I constantly think about how to balnce some sense of “normalcy” and yet take the time to take care of myself and prevent another flairup. My RSD is in my left foot and ankle. I too had 2 surgeries on my ankle that resulted in the RSD.
It has been my experince that I need to pay attention to my pain level and try not to do anything to raise it . Sometimes, I feel like I did everything I should and I still wind up flaired up!! Sometimes, there is just no explaination.
I use meditation to get me through the rough spots!!
Thanks afgain Dafny for the very accurate summation of life with RSD (CRPS)
Jessica Esswein
Jeff // Nov 13, 2009 at 8:46 pm
It’s good to know that some people are managing to find ways of balancing and coping with RSD (CRPS), I have had RSD for over 10 years now, I was not diagnosed until I was already in stage 4, because I had a severe crush injury to my legs and lower back and the symptoms were basically masked by the degree of my injury. Then I was misdiagnosed with bone cancer and MS, finally I was fortuneate enough to get a doctor that new what RSD was and diagnosed me correctly, after the damage was already done. I have RSD in both legs and lower torso, and managed to keep it contained, until I had to have my pain implant pump replaced, and what should have been 1 surgery turned into 4, because the doctors did not check the cathater, and then I developed a staff infection that, by the time the doctors believed me that something was wrong, was so bad I was told if I didn’t have the pump removed I would be dead in 24 hours or less. I had HUGE amounts of drainage from a hole in my back, through which you could see my spine. Anyway, now the disease has spread to my entire body. I don’t have enough space to write all the treatments and procedures I have been through, or all the physical problems associated with my medical condition, but I am a rancher, and I LOVE riding horses, I am planning on trying to make a trip with my horses to raise money for research for RSD. In the meantime I am NOT going to let this wheelchair or RSD (CRPS) stop me from living life to it’s fullest!!! Anytime someone tells me I “can’t” do something, that’s ALL I need to make me prove them wrong. I don’t know much about balancing my life, it’s too caotic, but I do know this, NEVER give up! Best wishes to all, and God bless!
Virginia // Nov 13, 2009 at 10:44 pm
My CRPS is in both legs. It started in the right thigh after a few months of extreme aerobic exercise which I thought would help high cholesterol, and spread to the lower leg and then to the other leg. I am tired of the medications, I have to take them 5 times a day, I lose track, forget to take them with me but I can’t go without them because of the severe hot prickling pain in the skin. The meds make me loggy, so tired, feeling yucky all the time. I would not dare to ride a bike, ski, run with my grandchildren. If we play hide and seek they have to count to 300 so I can get out of sight even. Any kind of physical activity above walking causes marked increase in pain for a few days and with it, a depressed feeling. I have requested a referral to the pain clinic in my area. Anyone have positive experience with this? I really want to try to discontinue someof medication ( neurontin and ultram.)
As much as the pain is in parts of our bodies, it seems to me that so much of the pain caused by this disability is in the heart and in the mind for what it does to us.
.
Christy // Nov 14, 2009 at 10:14 am
Dafny,
Thank you for sharing so openly. CRPS does tend to take things from us — things that we hate to admit. I just got a scooter and am thrilled with the freedom it gives me. One of the problems of this disease is that it does rob of us of normal function, which then causes those we love to be robbed of the person we used to be. So trying to balance the idea of being independent and still being ourselves and yet still saving time and energy for those we love is VERY hard. For myself, it is so easy for me to give more to those at my job (at a church) and then be exhausted when I get home. So I am trying to figure out how to get that balance. Good luck to all of us in finding balance for ourselves, our families and other loved ones, and our work (and play!)
Stacey // Nov 14, 2009 at 7:37 pm
Dafny,
I guess you could say that balance is very important, but since getting the diagnosis from my doctors I’m a bit confused. I’ve done the injections and tried different meds but nothing seems to relieve the pain that most of the time I can barely breath. Have spent alot of time researching and don’t understand why more doctors are not willing to use the Low-dose Ketamine awake method. All the reseach shows the most promsing of all the others. I feel that if the patients are willing to assumed the risks then why let us continue on suffering. I’m a single mother of a 13 your old son and am desperate to get well. Have you discussed this option with any of your own doctors.
Thanks for letting me vent.
Stacey
Mike // Nov 14, 2009 at 9:17 pm
My son has RSD, and I don’t know how to be empathetic and understanding in a way that shows how much I care and love him. A “normal” person has no idea of the type of pain an RSD person experiences. I prey and think one day I will get my active, happy, bright, wonderful son back to his normal self. I just need him to know that I will do all I can to be there for he and his incredible wife. I love him as he was and as he is…unconditionally.
Sherrie Sisk // Nov 15, 2009 at 9:34 am
Great post.
I tend to think we are responsible for most of the “struggle” about balance, simply by framing the issue in terms of both of those words — struggle and balance.
When you think about one of those balance boards, it becomes apparent that balance is never a static thing. It’s not something we hit and achieve and hold still with. It’s a constant series of adjustments.
By calling it a struggle, we set ourselves up to suffer. I am no better at this than anyone else but lately I’ve been experimenting with simply thinking of it all as “life” and not even “going there” with the whole “struggle” thing.
It’s really, really hard to approach it like this because emotions are tricky little things and they spring up at the most inappropriate and inconvenient times. But I really think it’s having a beneficial impact on my wellbeing overall.
I second the meditation recommendation. Truly, it’s been a blessing in my life.
Just a thought. Thanks again for this awesome post.
Jan // Nov 15, 2009 at 12:20 pm
I suffer from RSD in my right knee after surgery. It has been 2 years now. I have been very fortunate in that I was diagnosed very early. I have had three surgeries on my knee – the first one triggered the RSD, and the other two helped me get back my ability to bend my knee. So now I can walk and sit in a chair!
I have undergone Ketamine treatment during my last two surgeries. The first one lasted 5 days and the second one 4 days. I also have ketamine out patient treatment for 2 days each month. I have responded very well, and I do not need any pain medications anymore.
I know why more doctors do not do the ketamine treatments – because it requires constant monitoring during the infusion and most insurances will not cover it. Also, it requires that the doctor be present. I am lucky because there is such a center near where I live in New York. As far as I know there are only three such centers in the US.
Something that I have also tried – is mirror therapy and meditation. Anything that can help quiet the mind I find helpful.
Let’s hope that the key to this dreadful disease is found soon.
Thanks for your helpful post.
How to Cope with Pain // Nov 15, 2009 at 5:43 pm
Jan, what are the 3 treatment centers for ketamine?
Jan // Nov 16, 2009 at 6:37 am
I don’t want anyone to think I am an expert in Ketamine treatment. I can only talk from personal experience. My treatment included a continuious epidural block along with 5 days of Ketamine intravenous infusion. I was not given the amount of the drug to put me in a coma.
Ketamine is not for everyone, nor is it successful in every case, I have heard that for some people the effects are temporary. As you know RSD can return at any time and is very unpredictable.
If you do research on line you will find that Ketamine is being used in different dosages and durations depending on where you go for treatment.
I found 4 treatment centers – there may be more.Besides New York – one in Philadelphia. another in Tampa Florida and another in UCLA in California.
Hope this helps.
Stacey // Nov 18, 2009 at 10:53 am
Jan,
Thanks for the quick response to the ketamine question. I’ll keep researching exactly where these treatment centers are. We all need those who truly understand what impact the symtoms of RDS/ CRPS has on ones life. Hopefully we can all help one another through these tough times.
Stacey
in Pennsylvania
Lisa // Nov 19, 2009 at 12:02 pm
I can really relate to all of you! I’ve been living with RSD in my left foot and ankle since 1993. I was also diagnosed with a connective tissue disease called Sarcoidosis in 1990, which I believe triggered the RSD. Over the years it has spread and morphed into similar nerve/muscle/joint conditions like carpal tunnel syndrome and TMJ. Life with CRPS is like walking on eggshells for me. One wrong step and I can get a flair up whose severity is often tied to the stress level I’m experiencing at the time. So the whole thing with having balance in my life is crucial. Doing enough but not going overboard where I won’t be able to do much of anything besides trying to get back to where I was before or in “remission.” Even when I watch my activity and stress levels, sometimes there is no rhyme or reason for the flare up. I do take Lyrica, combine rest with moderate exercise, eat right and when it’s nice out, I also take the dog out for a walk!
Stacey // Nov 19, 2009 at 3:47 pm
Hey Lisa
How do you feel about the Lyrica? Only got to try fot a short time but then the insurance company decided not to cover the script. I was taking such a small dose but it seemed to be alittle affected. Also have tried Avinza but experienced too many side effects. Currently the doctor has me taking Ultram + Lidoderm Patches but can’t seem to get any relief. I try to exercise but unable to endure the nagging pain. On nice days I too walk the dog or should I restate that ,”He walks Me!” Thank you everyone for listening. Next week is my appointment with my current Doc and have bee anxious to address more concerning low-dose Ketamine treatment. Keep me in your prayers, hopefully we will come up with a treatment that will benefit us all.
Debbie // Nov 22, 2009 at 9:58 pm
Boy I can really relate to Dafny as I have had RSD for 16years now. The first 10 years I was up and down but was able to control it with medication. It started off in my left hand from a fall and now it has travelled to my whole arm across my shoulders, it’s in my right arm and travelled down to my legs and feet. I have been to over 25 pain specialists which have put me on different strong medication which really knock my body around but I hung in there only to try for them to help but I’m afraid it didn’t , physical therapy, nerve blocks, have used massage machines and muscle creams which only helps for a moment, acupuncture and even tried a Naturopath and gone on vitamins.
Trying to balance family life and work is very hard. Was able to work full time for about 8years then part time for 6years and now I haven’t been able to work the last 2 years. Which has been so frustrating and depressing at times when you love work and enjoy your life like we all do.
The last 2years I have been in and out of bed as walking has been so hard for me. This awful tiredness and pain I have just knocks me and I hate the thought of having to stay in bed. But wait for it I do have my good days. Lol!!!
I live on a very strong dose of morphine now which I hate but it’s a matter of having to. I pray to the good Lord that one day I’m able to come off it. Where I live it’s not known that well and people just don’t understand what this dreaded disease does to you. It took me a while to understand it.
I do know about the Ketamine treatments and the doctors here won’t do it as it cost alot of money. But on to some good news at the moment I’m having a treatment which is called Primal Reflex Release Technique (PRRT) which is to do with the brain. Now this sounds strange and it’s a slow progress but it is helping me.
It’s hard to explain it but here goes, my doctor tries to connect to the brain by talking to me about different things and release the energy from the brain that is blocking the nervous system. By now you are all thinking this is really strange and I agree but it is helping me. I’m sleeping better my pain levels are good that awful foggy feeling in your head has gone and over all I’m feeling brighter. Thank the Lord!!! Yippee!!!
As I said it’s a progress that will take time but I’m hanging in there. Anyone out there reading this and I hope someone is hang in there be positive as I know how hard that can be but this is working for me. Thank you all for listening to me and reading my comment. If anyone out there would like to email me at anytime please do as I would love to hear from you.
There is no other person that I know in my country New Zealand that has this and it would be nice to talk to someone else that really understands what we are all going through. Thanks again and keep your chins up.
Take care.
Love Debbie.
Hugs and Kisses.
michelle // Nov 23, 2009 at 11:42 am
I had an accident, where I tore my right arm, shoulder, neck and fractured my back. I have had 1 nerve block which I am told that my Dr. had requested a series of three. I have done the spinal cord stimulator trial, which for me was a very awful experience. I have tried physical therapy, and my arm would swell up an inch bigger around, and I got quarter sized knots all over my arm. I went to a hospital that said they had a pain program, well I was expecting to meet someone like me. I was in a room in a lowest level of the hospital, where I was told I would be there for 30 days. WHAT A CROCK THIS EXPERIENCE WAS. I was only there for 6 days, not due to me, I was lucky enough to have a relative that could demand some MRI that was when I found out that I have many issues with my back, or I should say that is when my complaints were confirmed. I do not know if anyone out there could tell my if you are having problems with Insurance companies not approving, or saying they never got a request from the Dr. ? I am waiting on approvals since April.
I am seeing a pain specialist, and a psychologist that only works with chronic pain patients. I have my team, and I was just starting thinking about what kind of job I could have that I could do with my disabilities. I couldn’t think of very many, but still thinking. Then the worst thing imaginable I lost my son, he died right before he would have been 21 years old. I am now in what my Dr. said the worst possible pain of any patients that he is treating. I have noticed that my RSD and Fibromyalgia is getting worse and I am in bed most of the time.
I know that pain and the mental do go together. I was wondering if anyone else has had their pain get excruciating after the loss of a loved one?
I just lost him in May, so this is still very new to me.
Thanks,
Michelle
How to Cope with Pain // Nov 23, 2009 at 12:17 pm
Michelle,
So sorry to hear about the loss of your son. It’s not surprising that, given that severe stress, your pain is worse.
Stacey // Nov 23, 2009 at 12:59 pm
Debbie,
I guarantee your not alone. My doctors claimed that this RSD/CRPS is 1 out of a 1000. This I am learning is not entirely true. I live in a little town in Western Pennsylvania (USA) and believe me there are many more of us than the doctors or insurance companies would like for us to perceive! I firmly believe there are better methods out there than just the average treatments/medications; I know its mainly due to COSTS. Pt. vs. the doctors (the numbers are staggering.) I’ve encountered that the insurance company require so much BULL —-! that the doctor’s and their staff just do not have the time. That being said ” We do have rights” So keep fighting. Remember, one person can move a mountain if your just willing to try.
I’ll keep trying for us all. May God bless you all.
Stacey // Nov 23, 2009 at 1:25 pm
Michelle,
Hope my post to Debbie helps you too. Keep calling your insurance company, file a grevience with them and with the State Insurance Commissioner. Let them know that your are entitled to certain rights, whether you are on a state funded or private program. All states are required by law to follow. You need to be heard like the rest of us. This has helped me, after many denied medications/treatments I contacted my insurance company’s medical directors and such and treathened to write to every major news outlet informing the public on how their insurance company treats their paitents. They did not like this at all and finally decided not to uphold that particular treatment.
So keep trying,and never give up. There is hope if we all stick together. Iam very sorry for your loss. From one mother to another, I will keep you in my prayers.
Stacey // Nov 25, 2009 at 10:08 am
Hello everyone
My appointment yesterday did not pan out like I would have wished. My doctor was aware of Dr. Harbut’s Low-dose Ketmine infusion thearpy but he dose not use the method as a form of treatment. He did say he would check around to see if anyone in my area would consider it. We did agree that it seem to be the least invasive treament but the only option for me other than that is the implantable Medtronic Neurostimulator. Has anyone tried this device?
Happy Thanksgiving to all of you.
Kristen Brown // Nov 26, 2009 at 3:38 pm
Hi – I am enjoying your site! I also have a blog, website and product for work/life balance and work stress relief. It’s part of a new company called Happy Hour Effect LLC started by me, a young widow mother, after 13 years in corporate America dealing with my own work/life stress.
Kristen Brown
Jeanne // Dec 1, 2009 at 2:45 am
Thank you to Dafny for writing a great post that so many can relate to… It applies to so many different chronic illnesses.
I have numerous chronic illnesses (too many to really list for the purposes of this comment)… the first of which hit me at 13 years old.
Now I’m 40 years old with daily pain from multiple illnesses.
I will get specific on one of my issues (issues is far too mild a word for it)… One of the conditions I deal with daily (not officially diagnosed as RSD/CRPS or as anything really) I have began immediately following my 7th surgery.
Two nerves were cut during that surgery. The ONLY thing that has helped the pain in that leg improve at all is acupuncture. Since January 2008 I have had very severe problems there. (The lateral femoral nerve and genitofemoral nerve were cut after an inguinal hernia was ruled out in a 2004 surgery and after 2 nerve blocks).
After over 4 years of agonizing pain, I finally agreed to have 1 of those 2 nerves cut. (They ended up cutting two but we won’t go there). The pain was so bad the 4+ years leading into that 1/2008 surgery that I didn’t think it could get worse. I WAS WRONG ABOUT THAT!
In any event, the neurologists all agree that I have “permanent nerve damage”. When I am in public, I have to “guard” that leg because if anyone accidentally bumped into me or brushed lightly up against me in a crowd, I would crumple to the floor, writhing in pain.
I know this because once in a blue moon (despite their best efforts not to) my poor family members have accidentally touched my leg and that’s what happens (collapsing to the floor upon “impact” – akin to a feather stroking my leg – and me screaming in pain even when I try not to because I don’t want to scare my daughter by screaming) .
When I say that acupuncture is the only thing that has caused ANY improvement in that leg, I don’t mean to imply that that leg doesn’t hurt like hell all the time. It absolutely does.
The thing is that after my January 2008 surgery and before my 1st post surgery acupuncture appointment, I was basically housebound. Going outside on a winter day with the wind blowing against my leg the 1st time I tried going out caused me to fall down in my driveway. The air pressure/temperature were far too much for my leg to handle.
Apparently, I was having “phantom pain”, from what I learned from a variety of sources at the time. Indoors, I had other problems. At times, my leg felt like it was burning. By burning, I mean ON FIRE.
The stabbing pains I had then felt like someone was stabbing my thigh with an ice pick.
My leg still hurts like hell. I still have to sit in an odd position to accommodate that leg. If I get really daring and go to a concert, I have to get the aisle seat because that leg cannot have anyone/anything next to it (including my own family). That leg must be protected at all times. It is exquisitely sensitive and I really do have to guard it.
To this day, if a fuzz ball or piece of lint gets on my pants, I can’t just brush it off that leg with my hand like I used to. The pain which that amount of pressure would induce would be far too great. If that leg itches, I’m in real trouble because scratching it is out of the question. It still sometime hurts to have the lightest possible cloth on that leg. I must carefully pick only the lightest, most flexible material for pants. We won’t even talk about trying to shave that leg. I have tried about 3 times since January 2008. Instant tears. I have had to make peace with the fact that “it is what it is”.
Thanks to acupuncture, that leg no longer burns like it’s on fire. The frozen feeling I used to get on that leg is nothing like what used to happen. On a very cold day, I do get the sensation that my whole thigh is frozen/very cold but not as severely as in January 2008.
Since acupuncture for that leg, I also very rarely get the stabbing, take-your-breath-away type pains in that leg that I used to get.
So, thanks to acupuncture… I am not housebound (the ONLY time I left the house before acupuncture began making inroads was for doctor’s appointments), my leg does not burn like it’s on fire, my leg rarely feels frozen, and I don’t feel like I could pass out from the pain all the time like I did after the 1/08 surgery.
That does not mean it doesn’t still hurt. It hurts in all positions but especially sitting. It’s a constant pain that flares up and gets somewhat better again but it’s always severe and there has never been any hint of a remission.
While I’d love to believe it’s going to keep getting better, I know how vastly improved it is since 1/2008… I know how long it’s been about how it is now… and I’m realistic enough to know (based on what I feel more so than anything the neurologists or acupuncturist have told me) that this may be as good as it gets for this leg.
I think knowing how far to push oneself to stay as active and productive as possible – without causing self-harm, back-sliding in symptoms, or even permanent damage from overdoing – is one of the toughest questions there is for chronically ill patients.
There are no magic answers and each patient has to find his/her own balance based on trial & error on a case by case basis, experience (more generally), listening to health care professionals and fellow patients’ thoughts on what may help most, etc.
The only person in my body knowing how much pain I’m in is me. My doctors, friends, and family can try to imagine the pain level but I am the one who feels it.
I have learned how important it is to truly listen to my body’s signals. Sometimes, I am more successful than others!
The thing is, though, that after 27 years of chronic illness/chronic pain and many diagnoses where one illness feeds off another, I have learned that to ignore my body’s signals is to do so at my own peril.
Thanks for a great post!
Jeanne
Stacey // Dec 23, 2009 at 5:51 pm
Hello Everyone,
Sorry I haven’t written in a while but I’ve been trying to push myself to get ready for the hoildays. Have some great news! Got on the list to see Dr. Schwartzman and I am elated with hope and joy! I know that its going to take sometime but finally I’ll get some answers and hopefully some relief. Jeanne thanks for posting your information we can all benefit from each others experience. I am patiently trying to except certain limits. Its hard when your mind is saying onething and your body is doing another.
MERRY CHRISTMAS- HAPPY HOLIDAYS AND A BLESSED NEW YEAR EVERYONE.
Please keep posting.
Much love and graditude,
Stacey & Santino
Courtney // Mar 17, 2011 at 6:58 pm
What do you do or recommend to ease flair ups when you are stressed or when the weather keeps on changing? I have CRPS or RSD and I have a spinal cord stimulator implant but it cannot ease my pain when I am stressing about school and I cannot avoid stress some times. — Oh and I am eighteen years old and have been diagnosed for three and a half years now with CRPS or RSD – two and a half were without the spinal cord stimulator.
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