Crocheting The Way Out of Chronic Pain

[dwiggicb]

hollar at me ANYTIME, because i live in chronic pain every day of my life...this is my list: back fusion, hip tears, arthritis and bursitis and NOW thanks to crocheting: tendonitis in the elbow!! i cried to the dr. the last time i was there and said, "well, am i just supposed to sit and stare at the walls?" here i am trying to do something "positive" with my time and what do i get? more pain! not fair!!! hollar at me anytime u wish!

Cynthia:)

[zeropixie]

I can't belive I have never seen this thread, just goes to show how big our community is. Tears are welling up as I read all these posts.

 

After injuring my neck I have been suffering with constant pain, migraines, high blood pressure and elavated heart rate for the past five years. I am beginging to think that I may have CMP (chronic myofascial pain). The more research I do the more convinced I am. I have made the commitment to get as much of my life back as possible. My DD is going to be five this year and I really want her to see that mommy doesnt have to spend so much time in bed under a fog of pain meds. She is very active and wants to learn to fish and go camping but until things change it just wont happen.

 

How do I help my doctor to give me the right diagnosis? Being a Medicaid/Salud patient I am limited to what I can do on my own. Doctor has to grant all referalls and that can only be if it's really needed.

She sent me to physical therapy but that made the pain worse so she sent me to a pain clinic for trigger point injections which help tremendiously. But that is all that has been done aside from the standard pain meds.

The thing that scares me is my blood pressure and elevated heart rate, I have had chest pain and shortness of breath but she never takes it seriously. In fact that was the reason I went to see her the last time and again she past it off, she gave me even more meds and told me to come back in a few months. I told her politely that if the meds didn't do anything there really wasn't much point to coming back because my care ws less then stellar, not those words exactly but you get the point. She didn't like that very much and gave me a look that said I was probably making it anyway.

Switching primary care providers is not easy and it takes time so if I can't get her to take me seriously I am stuck.

 

What have you said to you doctors? Did you have some information for them to read?

[Misa]

Hello ladies

 

Just checking in as I haven't posted to this thread in some time now. But I have been reading. I know how frustrating it can be dealing with the doctors. In my case, the solution has been not taking no for an answer. Pressing until something is done. I treat doctors like what they are....employees. I wouldn't put up with that kind of attitude from a plumber, I'm darned sure not going to take it from someone caring for my body

 

Since my last post, I've been diagnosed with emphysema on top of everything else. I have very mild symptoms as of now, but I know it will get worse. But I still hold out hope! I have a great team of doctors finally. My pain management guy is the best! Yes, I'm in a narcotic haze most of the time still since I'm allergic to aspirin and nsaids but things are getting better. He gives me Hyalgan injections in my knees which help somewhat. It is only FDA approved for knees but an off-label use is hip injections. My left hip is probably my biggest problem other than my hands. So he gave me an injection in my hip and the results were fabulous! No pain at all until the last few weeks to the next injection (can only be done every 6 months) or with overuse. It's made a super difference in my life.

 

When I found the Clover hooks that I can actually hold, I told him that I was crocheting again finally. Of course, I was so excited I overdid it at first Now I'm in a rhythm of crochet and then rest that works well for me. He can be a horse's rear sometimes but he's also my biggest cheerleader. That alone helps a lot.

 

My primary busts her hump to make sure that other docs listen to me and she gets me what I need when I need it. She never gives up on me. She's my champion!

 

Bottom line, I think once you find a good medical team life can be greatly improved. It's taken me over 20 years to find the folks I needed. It can be done. Hang in there all of you...you're in my thoughts always

[mythunderbird]

i am also checking back too. it is heartbreaking to hear these storys that people have to deal with because doctors don't care. mine was not so much as my primary didn't cared, on the contrary he was and is my champion, now the other doctors , well they are another story. grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

 

 

i could not believe the horses patoots i dealt with including one pain specialist who swore all i wanted was pain meds and i was nothing but a junky, i swear i hope he somedays experiances the pain that i have endured for all of these years. if anyone needs someone to talk to pm me i will be try my best to cheer you up:devil:devil:devil

[sunflowermom1972]

Wow.. I am so happy I actually found other pain sufferers..

I have not yet been diagnosed with fibro BUT have symptoms.. just cannot seem to find a dr to diagnose me.. people are telling me to see a rheumotoligist... so i guess i need too.. just am soo tired of drs.. they put me on this and that.. but wont say well this is whats wrong..

I told my husband last night, well it has got to be in my head.. although I KNOW IT isnt.. I KNOW the pain I suffer.

Crocheting has sooo helped me to actually MAKE myself sit.

[sunflowermom1972]

How do I help my doctor to give me the right diagnosis? Being a Medicaid/Salud patient I am limited to what I can do on my own. Doctor has to grant all referalls and that can only be if it's really needed.

 

 

 

I too am a medicaid recipient.. and its soo hard. i hope someone can give us some good advice..

[PBLKNP]

Well, I don't suffer from physical pain, but years ago I was suffering from depression. I couldn't motivate myself to do anything, short of work (which I sort of had to do to eat ). I had no joy in my life othewise. One day, however, I wandered into the craft section at Walmart and was suddenly taken with the urge to crochet again--something I hadn't done since college. I went up to some random woman in the aisle and asked her what size hook I should get to work with the skein of yarn I'd picked out (Red Heart Super Saver, of course). I brought everything home and just started to experiment...and the rest is history, as they say. Granted I also did therapy for my depression, but I definitely would say that the day I picked up the hook again was the day it all began to turn around for me.

[Elle]

I was shocked, and truly saddened to learn, as I read through this thread, how many of you wonderful people are fellow chronic pain sufferers.

 

I suffered a repetitive motion injury in the mid-90s, I ended up with three herniated discs in my neck. For six years I went to doctors, some of whom tried to help, some of whom looked at me like I was some junkie off the street looking for a fix. I finally found one that said that he knew a surgeon who could correct my problem. I went to him and, sure enough, he told me that with the removal of the three discs and fusion of my neck, he could have me pretty much back to normal, with just a bit of reduced range of motion in my neck. Before my surgery he prescribed a myelogram so that he could see just where the nerves in my neck were being pinched off. They injected the dye and did the CT scan, I went home, three weeks later I had the surgery, and thought I was on my way to recovery. I could not have been more wrong.

 

Six months after the surgery I started having severe pain in my lower back. To make a VERY long story short, it turns out that due to the injection of the myelographic dye, I now have a condition called Adhesive Arachnoiditis, which essentially is a doctor-caused, lifelong, incurable version of spinal meningitis. Spiders In Your Spine The arachnoid is the membrane covering the spinal cord, and what will happen now is that scar tissue will build up, eventually to the point where it prevents the flow of cerebro-spinal fluid, and the nerves in my lower back will basically fuse together and just die off, leaving me unable to use my legs.

 

I spend a solid year in bed, unable to walk or go anywhere until I found my current pain management doc. Now, with the use of oxycodone and very careful exercise, I am able to walk again and I forced myself to go back to work, just to save my sanity. I was very fortunate to find a job that provides me with a really nice apartment to live in right on the premises, all bills paid in addition to my salary, and I have a power wheelchair for when I have to go long distances. We also have an olympic sized pool here that was instrumental in my getting my "sea legs" back because I exercise in it every day that the weather permits, which, down here in South Texas, is most of the year.

 

Seven years ago I was diagnosed with fibromyalgia and, truth to tell, that was difficult enough to deal with until the adhesive arachnoiditis came along. The two pains are very separate and distinct, the fibro being a diffuse muscular ache and the arach being a stinging, throbbing, shooting pain that feels like a hot wire running through my lower back and legs. It has spread up my spine (eventually it will spread to everywhere the dye touched in my spine) and is now affecting my eyesight, however that's sporadic and doesn't happen unless I allow myself to become completely fatigued. I get what I call "eye seizures" where I feel a discernable "click" in my right eye and then have a bout of double vision that can last anywhere from two minutes to two hours. It feels like my eye is crossed, but to look at it, it looks straight as an arrow.

 

I also get strange neuropathies that feel like anywhere from a dull ache in my arms that feels like someone is trying to pull them out of the sockets, to a sensation that feels like I have a bad sunburn on certain patches of my body, except the skin is not red and it's not hot. I get sensations of hot water running through my arms and legs, but mostly I get pain. The hot wire pains in my lower back, legs and arms, and pains in my feet that feel like there are shards of broken glass stuck in them, but there's nothing there.

 

On my last visit my doctor upped my dosage of oxycodone to 15-30 mg every four hours. He said I can decide whether to take one 15mg tablet or two, depending on my pain level that day, but I have to take at least one every four hours no matter how good I might feel, just to keep the level of the drug up in my system. He told me it's easier to prevent pain than it is to stop it once it starts. It's WAY past the point of preventing it, I have lived in constant pain for the last 10 years, but I understand what he means in theory, so I follow his instructions.

 

It has recently been discovered that epidural steroid injections are responsible for the disease that I have, and ironically, epidural steroid injections are the treatment of choice for lower back pain. I urge anyone whose doctor might be considering these as a treatment for them to PLEASE read the link I included early on in my post and to do a LOT of soul searching before agreeing to these injections. I wouldn't wish this on anyone.

 

As heartbreaking as it is to learn that so many of you have chronic pain conditions, it's oddly comforting to know that I am not alone. Gentle hugs to all of you wonderful, creative souls and I wish you all a low pain day. And thanks for listening.

 

Elle

[ErinLindsey]

It has recently been discovered that epidural steroid injections are responsible for the disease that I have, and ironically, epidural steroid injections are the treatment of choice for lower back pain. I urge anyone whose doctor might be considering these as a treatment for them to PLEASE read the link I included early on in my post and to do a LOT of soul searching before agreeing to these injections. I wouldn't wish this on anyone.

 

My mom has had at least 4 or 5 epidural injections for back pain in the last 3 or 4 years. I dont think she's going to be doing anymore now that she's walking more normally after knee surgery. She has been complaining of back pain again recently.

 

I'll have to ask my dad about this...he's an anesthetist (Certified Registered Nurse Anesthetist) and knows a lot about pain management.

 

I've got some pretty serious back pain (no idea if it's MS related, or car accident related) and was thinking about doing the epidural injections like my mom had. I think now I'd rather just live with the pain like I've been doing. (I dont usually take anything anyways, but if it gets really bad I'll pop a tyelenol or advil...doesnt do much for it tho) After I've been dealing with numbness in my legs and now my arms and (strangely enough) my left ear, I think pain is a much more welcome sensation than numbness. At least I can feel something that hurts.

[zeropixie]

I found this group and joined so I an still reading all the posts but it does seem to be a great source of comfort and help.

http://groups.yahoo.com/group/Fibromyalgia-Crochet/?yguid=224826498

[scc51055]

thanks will look into it!

[shadow]

I understand the pain you are in! I have fibromyalgia, burcitis (sp?), berylliosis (chronic beryllium disease), arthritis, 2 herniated discs in my back, knees and hip joint problems from 19+ years of almost constant prendnisone treatment, and IBS. There are days I don't want to get out of bed...and some I don't. Thank god I have a wonderful hubby who cooka and cleans and most of all understands when I don't feel well.

[sueb0154]

well i am fairly new here and just found this site. i have had fibro for at least 8 years. when i was pregnant with my son i had severe pain in my back all of the time. not being a complainer i never said anything to my ob. the pain subsided a little after i had my son. then my mom became ill with leukima and all of the stress of her illness finally sent me to my family doctor and i was diagnosed with fibro. my son was only a few months old then. a couple of months later my mom passed away and i had to little kids to raise on my own and all of the stress only made the pain worse. of course that is still when doctors didn't beleive fibro was a real illness and the just kind of ignored my problems and that is when my depression set in. they finally did give me prozac for that. was on it for almost 2 years when i suffered a panic attack from them and was switched to something else. that worked fine untill i no longer had insurance and couldn't afford to go to the doctor. that is when my relationship with God got better and things started to get better for me. i can tell you all i haven't been on anything for at least four years now and my depression is doing good. i still have pain from time to time and was on celebrex for awhile using prescription assistance but after awhile it started not working as well for me so i quit taking it and when i was on it there were all of those problems with the side efects and the talk of recall that i figured i would just live with the pain. been doing good so far. i take over the counter pain pills only when i really need it. it is working so far for me. i know how isolating the pain can be, especially when your loved ones think you are overexagurating your pain. but what can i say. take one day at a time and i praise God all i can and i beleive he can releive the pain that man can't. take care to all and God Bless.

[ashleighraew]

Oh my gosh! I almost forgot I existed on this forum!!! How has everyone been lately?

 

I have to admit I've been a mess! Nothing has been going my way. The ride has been so insane that I've been driven into the ground.

 

I've been so so so so out of it. And work has gotten really hectic. I upped my schedule.

[ErinLindsey]

Oh my gosh! I almost forgot I existed on this forum!!! How has everyone been lately?

 

I have to admit I've been a mess! Nothing has been going my way. The ride has been so insane that I've been driven into the ground.

 

I've been so so so so out of it. And work has gotten really hectic. I upped my schedule.

 

I've had an interesting (and stressful!) month. My boyfriend finally declared his love for me... My sister visited and drove me insane... I'm apparently having some sort of exacerbation of my MS (probably because of the stress of my sister driving me insane!) and I'm getting ready to go on a vacation to S. Dakota in about a month.

 

The MS is acting all wonky. Sunday I noticed if I bend my head forward towards my chest, it makes my arms and legs feel all tingly (icky sensation too) That's apparently called L'hermitte's sign. I guess it means I have some sort of damage in my cervical spine (that's the neck) At least I have something to tell the neuro next week other than "I'm fine, except for the numbness, crappy vision, and the burning tingly sensations"

 

My lower back and my neck have been hurting me a lot lately too. But, I've consoled myself with buying some yarn and starting an afghan AND a shawl. I think I'll do some more consoling of myself by going yarn shopping at some local yarn stores while I'm wandering around in South Dakota next month. (that's if I can get the boyfriend to stop at those kinds of stores)

[ashleighraew]

My heavens, this week could not have been any worse for me.

 

On Monday, when I went back into work, no one was in a good mood, and every person that called in had to, um, number 2, down my neck. So, needless to say, I went home crying because my neck and shoulders got so tight.

On Tuesday, everything was going fine until the big boss posted a memo on the wall that they were looking for someone to fill in a position on the side of the call floor that I'm on. Looking around, all seats are full. So, I was wringing my hands all day Tuesday, and went home with stiff hips, hand, neck, shoulders, and ankles, and cried to my mom.

On Wednesday, I had a day off, but was about in tears because I couldn't sleep and woke up almost every hour because my jimmy legs had made me kick my solid cedar chest by my bed.

On Thursday, when I was having my smoke break, I was attempting to do a balancing act by smoking, talking on the phone, and walking on the retaining wall on our smoking patio, and fell, hard, off of the 4'1/2" wall. My knee was bloody and purple, and worse, I broke my last cigarette.

On Friday, nothing really huge came up, well, except I banged my stiff, swollen, bruised knee up against a bar on the bus.

On Saturday, work, of course. I hate working on Saturdays. Nothing could be worse than a bad week, and then having to work a Saturday to top it all off.

 

But, I've made a lot of progress on my crocheting, YAY!!!

 

OH! I got a tattoo to prove to myself that my pain tolerance is VEWY VEWY high.

[zeropixie]

Sorry to hear that you week was so bad Ashleigh . I know how you feel yesterday I visited a friend I hadn't seen in over a year and was miserable because my blood pressure was very low and my neck was spasming which of course led to a migraine.

What is your tattoo? I have that "ink itch" really bad.

[ashleighraew]

I got a hibiscus done on my hip. It was quite the interesting experience. I found a shop where my mom had gotten hers done and decided I was going to do a walk in and get a tattoo. I knew I wanted a flower, and I knew I wanted it somewhere on my back. I showed the guy at the register where roughly I wanted it, and asked him to point out the most painful spot. He pointed out the fatty part right over my hip and said since there's more fat and muscle in that spot, it's bound to hurt more.

Well, it hurt, bad, but it wasn't the type of pain I expected. It got more obnoxious than anything else because I was sitting there for so long. And it was funny to watch all these tattooed muscled biker guys crying when they came out of the private room holding their hands over various parts of their bodies. Well, that and humorous to have all the guys that worked in the shop coming by and gawking because there was a "hot chick" with her pants down over her butt.

Embarrasing!

I'll post a pic on my blog.

[dsneystamp]

I too have severe Fibromyalgia. My family doc has been great through all of this. It took me a while to get diagnosed. It's hard to find a doctor that doesn't want to give you the look of being a hypochondriac. You begin to wonder the same thing to yourself after a while. My fibro has caused severe pain, depression, memory trouble and so on. On top of all of that, I have carpal tunnel in both hands, peripheral neuropathy in both legs (legs/feet numb, tingling, dead all of the time.) This has caused me to have pain in the legs worse than usual and to have difficulty walking at times. I am severely sensitive to heat and cold, as well as smells and chemicals. My doc has me on a mixture of meds. I take antidepressants, which has been shown to be effective with fibro sufferers. Low dose muscle relaxers, such as flexeril work great too. I take hydrocodone for the pain. Without it, the pain is so severe that I can't stand to sit or lay in any position. Something I have found that works great for the bed is one of those memory foam mattress toppers. I want a full mattress, but the topper has taken so much pressure off of my hip joints that it's unbelievable. If you have any questions, I'd be happy to share what experiences I've had. I'd also be happy to hear anyone else's stories.

 

Thanks,

 

Joyce in Arkansas.

[ashleighraew]

I know how hard it is to find doctors that don't make you feel like it's all in your head.

 

One thing I would definitely recommend is Celebrex. It has very minimal side effects and helps to cut down on the edge that makes you feel like you have the flu.

 

As for the neuropathy, I've heard that low-dose seizure medications (such as neurontin, phenobarbitol, etc.) do amazing things to cut down on the nerve sensations.

 

Also, I've got a close friend that was taking Lyrica for nerve pain.

[ErinLindsey]

I too have severe Fibromyalgia. My family doc has been great through all of this. It took me a while to get diagnosed. It's hard to find a doctor that doesn't want to give you the look of being a hypochondriac. You begin to wonder the same thing to yourself after a while. My fibro has caused severe pain, depression, memory trouble and so on. On top of all of that, I have carpal tunnel in both hands, peripheral neuropathy in both legs (legs/feet numb, tingling, dead all of the time.) This has caused me to have pain in the legs worse than usual and to have difficulty walking at times. I am severely sensitive to heat and cold, as well as smells and chemicals. My doc has me on a mixture of meds. I take antidepressants, which has been shown to be effective with fibro sufferers. Low dose muscle relaxers, such as flexeril work great too. I take hydrocodone for the pain. Without it, the pain is so severe that I can't stand to sit or lay in any position. Something I have found that works great for the bed is one of those memory foam mattress toppers. I want a full mattress, but the topper has taken so much pressure off of my hip joints that it's unbelievable. If you have any questions, I'd be happy to share what experiences I've had. I'd also be happy to hear anyone else's stories.

 

Thanks,

 

Joyce in Arkansas.

 

I just got copies of my medical records from last year. (needed them for the MS clinic, but I'm making a "scrapbook" for myself too) and I looked at the report for when I went to my regular doctor last May because my right leg was numb. The PA (Physician's Assistant) actually put in the record that she thought I was a drug seeker. WTF!?! (I'm going to be calling that office today to see if they could have that removed from my records!) That was my first obvious symptom of MS. I could have been put on the immunomodulating drugs before now, and possibly avoided the whole vision problem with the Optic Neuritis... argh!! I hate that PA!!

 

I've never been a drug seeker! I've even been offered the narcotics once or twice for my back, and have always refused them and just asked for a Rx of a non-steroidal like Ibuprofen or Naproxen or something with out anything addictive in it.

 

Even this week, the pain in my back has been so bad that I've been tempted to borrow some of my mom's good meds that have the narcotics in them, but I havent. I just get out the bottle of Ibuprofen.

 

I'm sensitive to drugs that have narcotics in them. If I do take them, I cant take them full strength because they affect me so strongly (same thing happens when I drink alcohol, it just knocks me out after a sip or two)

 

Plus, I've heard from people who are taking the stronger stuff that you eventually build up a resistance or something to those meds, and they can eventually no longer work for you, or you have to start taking more and more of the drugs to get them to work. So, I'll be using the non-steroidals until I have to take something stronger.

 

I'm going to the neuro in about an hour. I will be asking him for a muscle relaxer like Flexeril, because I've taken that before (years ago), and it doesnt make me feel weird or anything, but it does help the stiffness in my knees and back. And I dont even take it full strength either.

 

Plus, Flexeril is cheap...I think with my insurance a bottle of 90 pills (which is something like a years worth of pills for me) costs about $5.

[zeropixie]

I'm sensitive to drugs that have narcotics in them. If I do take them, I cant take them full strength because they affect me so strongly (same thing happens when I drink alcohol, it just knocks me out after a sip or two)

 

I can understand about taking certain drugs. I hate feeling disconnected it can sometimes be scary. More than once I have had to take something that is fairly strong and have been unable to recognize my own daughter:eek. Thankfully I live with my mom and she takes of DD whenever I need to take something but I try very hard not too. As for alcohol I am now allergic to it something to do with the yeast which is fine after all what exactly am I missing.

Hope that you have a good visit with the Neuro and can get some relief. Have a comfortable day.

[ErinLindsey]

I had a fairly good visit with the neuro...except for the migraine headache that started when some woman came into the waiting room just marinated with what smelled like eleventy-thousand different perfumes. And she went in to see the neuro before I did, so I got the double whammy of stinky stuff.

 

The neuro noticed I was rubbing my forehead, and asked if I had a headache...I said, "nope. Migraine. From the stench of the woman who had apparently embalmed herself with White Diamonds, Axe body spray, Chanel, and...I think skunk smell..." He giggled and said that he sympathized, he's got scent allergies too and he just had to spend a half hour in a closed exam room and office with that lady. He was apparently getting a migraine too!

 

I cant wait to read the medical report he writes up for this one. I've read some of the reports he's written after I've seen him. He's got a good sense of humor while yet, still professional.

 

He said I looked pretty good. I'd had some improvement, while still having a setback or two. I've got a new neurological symptom...something called L'hermittes (pronounced "leer-meets". means that when I bend my head forward I get numb tingly sensations in my hands and feet)

 

He did give me a Rx for Flexeril (a muscle relaxer) for my back.

 

Now if I could just get rid of the stupid migraine that Pepe' Le Phew triggered with her odor, I'd feel better.

 

I'm going to go take a migraine pill and watch Mythbusters.

[zeropixie]

Now if I could just get rid of the stupid migraine that Pepe' Le Phew triggered with her odor, I'd feel better.

I'm going to go take a migraine pill and watch Mythbusters.

 

I can more than understand for me it's lavender which of course is in everything from perfume to laundry detergent. I got a kick out of Mythbusters episode last night hope you did too.

[ErinLindsey]

Ever walk thru the potpourri aisle in a WalMart craft department? I cant stand it!! (especially the mulberry potpourri) I used to work in a WM craft department, and I absolutely HATED the potpourri aisle...and no one believed me that I could get a migraine from smelling that crap. (WM managers are totally evil jerks! and the girls I had to work with were more evil than WM management is)

 

That migraine from yesterday finally went away about an hour ago. So it lasted over 24hrs. It's messed up my sense of time now. I thought it was only about 6pm until I looked at the clock on the computer. It's 745pm! I forgot to eat lunch and dinner. It doesnt even feel that late to me.

 

Yes, last night's Mythbusters was excellent. I loved how they tried to hypnotize Grant to paint hearts on his robot. (didnt work)