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Posted 2/23/2012 2:42 PM (GMT 0)
I thought I would start a thread that could be a short introduction of each member. There are so many new members that I can't remember that I can't remember the ins and outs of each what your story is. And maybe at the same time it can help everyone else at the same time. I was thinking we could mention what our chronic pain is, what meds we take, how you are coping, where you live, you know stuff like that or a bit about yourself, what is the meaning behind your screen name.... etc.

Hope you all think this is a good idea.

So I will get the ball rolling.

I am Suzane. I live in Ottawa, Ontario, Canada. I am a paediatric nurse but have lost my job back in 2008 due to my chronic pain. I am 54, married to a very supportive man, have two boys, two grandchildren.

 I have been suffering with constant severe headaches for twelve years. In those twelve years I have done everything possible to find the answers; so many doctors, forms of treatments and all kinds of med to no avail.

I am currently investigating going out of country to be investigated for an occipital nerve stim. I have an appt in March to see a new pain dr. and another referral in the works for another.

 I keep ice on my head all the time. It goes with me everywhere i go. LOL.

My screen name refers to my jaw, face and head pain I have. I have a tmj disorder; tmj being your jaw joint. I have had a lot of orthodontic work for this as well which still did not help my pain.

I take three antidepressants, as you know depression and chronic pain go hand in hand; no narcs as I have tried them all and none of them help my pain, as well as many other types of meds.

 My motto is one day at a time. I try to stay in the moment but even that quite often does not sustain me.

Looking forward to hearing from you. I sure hate having this memory problem as well as decreased cognitive functions. Chronic pain is not easy to live with but I believe we are all stronger and courageous beccause of it.

Suzane

Post Edited (tmjpain) : 2/23/2012 10:09:57 AM (GMT-7)

Posted 2/23/2012 4:54 PM (GMT 0)
I'm Tina. I'm 39 and I live in Maine with my hubby and 4 kids ranging in age from 8 to 14. I used to work in a lockdown dementia unit in a veteran's home and volunteered on our local rescue as an EMT.

I had a car accident back in 2005 that totally changed mine and my families lives. Currently I'm only taking meds for my diabetes, cholesterol, blood pressure, asthma and ibuprofen for pain. I do use voltaren gel, zanaflex and lidoderm patches. I've been on Topomax, neurontin, cymbalta, amitritptylline, hydrocodone, flexerill, MsContin and probably others but the brain isn't working.

I've been diagnosed with bulging disc c4/5 and l4/5 and a herniated disc thats erroding the thecal sac at t11/12. Cervical and lumbar radiculopathy, chronic mysofascial pain, spondylosis to the cervical and lumbar. SI joint dysfunction. I did have TMJ from the accident but that was resolved with cranio sacral therapy. Everytime I see another doc they add another diagnosis. lol

I've had epidural injections, facet injections, medial branch blocks and RF's, occipital nerve blocks and Botox. I've been approved for an occiptal neuromodulator and a SCS for my lower back. Holding off on those for now.

I've seen my PCP, spine specialists, orthos, neurosurgeon's, pain clinic and a headache specialists at Faulkner/ Brigham and Womens in Boston.

Currently I'm scheduled for another round of RF's next month to my neck. Then we'll start working our way down.

Can't think of anything else. Must be because I haven't had enough coffee yet.
Posted 2/23/2012 5:12 PM (GMT 0)
Hi Justanother day and great to hear from you. I know we have chatted a bit before regarding our headaches. I see you have been approved for an occipital neuromodulater which is what I am looking into for my headaches. Can you tell me what you know about it, the name of the doctor and where he is located, etc. Can you email me if you prefer. My email is located right under my name in the left hand column. thx.

Suzane
Posted 2/23/2012 7:49 PM (GMT 0)
Suzane, thanks for starting this thread, I also feel very far behind on getting to know new members, and forget the details for many people too.

My name is Heather and I live in the midwestern United States. I'm 31 years old and between jobs right now, but work as a health policy analyst. I'm married to a wonderful and supportive woman, and we have no kids yet.

I have several chronic health issues, but most of my pain right now is from fibromyalgia and SI joint dysfunction. I also have endometriosis which causes some pain but is pretty well controlled right now. I have a lot of back pain, but my biggest problem is the fibro, which amplifies all my other pain issues.

I take Cymbalta, Lidoderm patches, and Tylenol #4 and Flexeril when needed. I take birth control pills for the endometriosis, and prescription Naproxen when needed as well. The Cymbalta has made a difference between unrelenting pain and sleepless nights and functioning fairly well.

I use a lot of non-drug treatments to manage my pain as well. I use ice and heat a lot, warm baths, arthritis gloves, wrist braces, taping, orthotics, and a cane. I have done physical therapy several times and have PT exercises I do on a regular basis to keep myself in shape. I also do yoga, but I am pretty inconsistent in my practice.

I am coping okay. I spent a lot of time last year getting my strength back after a back injury, and am trying to continue to get stronger and be more active. I am a very private person and don't like talking about my pain. I haven't told my family about the fibromyalgia, and have only told a few close friends. I try not to let pain slow me down, but I am slowly accepting that my pain does mean I need to pace myself to avoid flares.
Posted 2/23/2012 8:26 PM (GMT 0)
Hi all I am Kathy/nini53, I am coming up on my year anniversery of joining the HW forum, and from the moment I joined I felt I had found a place where everyone (sadly) knows how I feel day by day.

I was injured at work in 1989, I was a construction inspector for our local water and sewer services, my job was overseeing the installation of new water and sewer mains.   I was still on probation when I was taking what is called a compression test on the road that was being built over the water that was just installed.  This involved pounding and large rod into the ground with a 10 lb weight.  Well the road was well compacted, as I went to remove the rod from the ground, it wouldnt budge, I saw a man coming to help me, and thought, if they think I cant do my job, I wont pass probation, I then stupidly pulled with all I had and not using my legs, using my back, the rod came out and I went down.  I went to the ER that evening, they called it a pulled muscle, gave me percocet and flexril and sent me home for 7 days of workmens comp.

As the years passed, I had more and more issues with my back, I had several MRI's that showed buldging disc's at L4, 5 and several problems around my cocsic (I dont know the spelling) bone, but it was my but bone.

By 1996 I was on vicoden es, and xanax, flexril, by 1998 after having a failed lumbar laminitomy, I gave up ever feeling well again.  I went out on work disability, was on methadone 10 mg up to 5-6 times a day and 2mg diladid for bt.  My doctor was my family doctor and I just kept asking for more and he just kept giving me more.  He left his practice in 2006 Dec. he left me with 2 months worth of scripts.  The first pm doctor I saw after that went crazy when he saw how much I was on.  So I went from taking 3 full bottles, 100 pills per bottle each month, to 170 10 mg per month, I was in withdrawal for a very long time, finally it evened out.  I have gone thru 4 doctors before I found the pm doctor I now have, and I travel a long way by public transportation to see him and hes worth it.  The other 4, well the first one sadly passed away.  The second and third were pill mills, and I wanted no part of that.  The only other one I liked moved out of the area where public transportation does not go.

I am 58, I have 2 beautiful daughters, and 2 beautiful grandchildren, I have made many adjustments in my life after becoming totally disabled in 2001.  But I am still here, alive and kicking, and plan to stay for a much longer time.

Sorry it was so long, take care all,

Kathy

 

Posted 2/24/2012 8:17 AM (GMT 0)
I have a hard time keeping up with everyone's stories, too (shoot, I can hardly keep up w/ my own, lol).... I won't give all the details - because, frankly - I could write a book - so I'll just give the basics (and, yes, this is the "short version" for me, haha):

Between ages 16 and 19 - got mono, severe case of chicken pox and had a severe reaction to the Hepatitis B vaccine (given in nursing school). I think all of these contributed to my future health issues.

Age 19 - fell approx 20 feet; broke my foot; but, again, think it contributed to my future CP issues. Also, had my 1st battle w/ meningitis; again, breaking down my immune system.

Between 20 and 30 - pretty darn healthy - and had six beautiful boys. Was very active; involved in a zillion things; etc.

Age 30 - BOOM! The ax fell. Severe health issues started. For every month I'd spend at home, I'd spend another month hospitalized due to health issues. I won't get into all the particulars.... but I ended up with the following diagnosis (these took several years - it wasn't all solved at once - that's for sure):

POTS (postural orthostatic tachycardia syndrome - a heart/blood pressure thing) and Dysautonomia
High Blood Pressure
Hypothyroidism
Reactive Airway Disease (pretty much - asthma)
Pineal Gland Cyst (in brain)
Depression and Anxiety
Chronic Pain Issues - DDD (thoracic and cervical regions); severe migraines; severe carpal tunnel syndrome; fibromyalgia

Age 35 - Pain Pump Trial; Successful... but got meningitis.... and opted out of permanent implant (for now).

Age 37 - Surprise! I was blessed with twin daughters - despite being diagnosed pre-menopausal/no cycles for 7 years; hardly any estrogen/testosterone in my body; etc. That sure threw me for a loop (to say the least).... "someone" has a sense of humor! But I wouldn't trade them for the world. Had my 7th c-section w/ them.... 7 abdominal surgeries did nothing to help my chronic pain.

Current age: 38....39, in a few months. All health/pain issues are still there.... and really don't look like they are going anywhere. That being said - my outlook is SO much better. I had to change my perspective and what I "thought" life would look like. My kids are what get me out of bed each morning - even on my worst days. And I still have VERY challenging days (ask anyone here, lol). But, I DO try to make the best of each day that we are given....

Thanks, too, for sharing your own stories. I enjoy reading them and getting to know you all better. --Tina
Posted 2/24/2012 3:55 PM (GMT 0)
yeah I think this is a great idea- thanks for starting it Suzane! I am fireflyhillary- the sci-fi show that was cancelled after only 13 episodes was called Firefly and it is near to my heart, so that's the meaning behind my user name.
I just turned 34 and have been married for 10 months- my second marriage. I live with my hubby and my three fur babies- A senior lady calico cat named Muffin, a soon to be 7 years old Chihuahua/Feist mixed dog named Buster, and a 6 year old Min Pin/Rat Terrier mixed dog named Zoe. Zoe is named after a character from Firefly and Buster is named after a character from Arrested Development.
My signature has all of my illnesses, but I will try to remember all of them. LOL I have degenerative disc disease L4-S1, arthritis L4-S1, facet syndrome, si joint problems, interstitial cystitis, vulvodynia, restless leg syndrome, bi polar, fibromyalgia, post traumatic stress disorder, irritable bowel syndrome...think that's everything. I am on Percocet 10mg twice a day, Baclofen 10 mg 4 times a day, Lyrica 100mg twice a day, Seroquel XR 200mg, Paxil 40mg, Clonazepam 1 mg, Hydroxyzine 25mg. I was recently prescribed Lidoderm patches, but they don't help, so I don't use them. I use mostly heat for my pain, ice occasionally, but it doesn't really help. Here recently my pain has been very severe, which I'm sure a lot of you know with all of my venting posts. The only thing that gets me through my bad days are my husband, babies, family and friends. There's several people that don't understand all of my issues, and think that all I do is complain, but I can't help it. I try to be as positive as I can because I know many more people are much worse off than I am, but it's not always easy. I live just south of Atlanta, Georgia. None of my family is here- I am from Arizona and was there until I was 21 and my first husband brought me to Georgia. I like it here, but my allergies/sinuses do not like it here at all. Since living here I've developed rosacea, but can't take anything for it as it either contains sulfa or it interacts with my other medications, so I just have to deal with that the best I can- there are many days I will not leave my house because I am so embarrassed by it. I am in school online and will finally be getting my Associates Degree in Medical Billing and Coding in September- I was let go from my job last August due to being out so much with health issues and I've not worked since. Thank the lord my husband makes enough to support us and that I've been getting unemployment. I am in my first week of doing a part time billing job from home and am really enjoying it- it's just hard at times to sit up and be on my computer. My true passion is making jewelry, but have not been able to do that in at least 6-8 months and I really miss it. I am a huge animal advocate and since I can't physically work at a shelter I do a lot of social networking to try to get animals rescued before they are put down and am involved online with quite a few petitions for animal rights. I guess that's about all- sorry I wrote so much! Feel free to ask me anything, I'm an open book and don't mind sharing my story with anyone. wink
Posted 2/25/2012 7:13 AM (GMT 0)
Hi all, i'm Kaila/Parsley. Parsley was the name of my favorite goat, so i've been using parsley as a user name since he passed away a few years ago.

 

I'm 23, and I live in north-central Ohio.  All together I have had 22 surgeries, I used to say I have a surgery for each year lol. I have been off work since September of last year due to my health problems. Hopefully I will be able to return to work someday, though right now I am in the process of applying for disability.

 

My health issues started when I was born, I was born with cataracts. Which the doctors did not find untill I was 2 years old. By then my right eye was to far gone to fix, though they tried. Untill I was 11 I was legally blind.  In 1999 they were able to do a lens implant..and something else that I cant remember the name of, after the surgery my vision improve greatly.

 

In 2006, I wrecked a snowmobile going 90mph. I went to the doctor that night but they told my I just pulled a muscle in my arm. Two years, four doctors and one surgery later, the true cause of the pain was found. I had torn all the muscles in my rotator cuff. By then it was too late to fix completely, the Dr. did the best he could, but I have lost about 60% use in my right arm and shoulder, and the pain has gotten worse over the last 6years.

 

My vision and eyes did okay untill April of last year. In April my right eye started to become painfull. I went to the Dr. and they could not figure out the problem. This pain continued and by August my right eye also became light sensitive. By Setember it was unbearable. Because the eye was legally blind my only option was to have the eye removed. Sept. 23rd my right eye was removed, since then I still have pain in the eye socket and the vision in my left eye is deteriorating.

 

So now I go to PM and visit my eye doctor at least once a month.  I take Lortab 7.5-500mg 4 x a day, 1200mg of gabapentin, zoloft 50mg, flexeril 10mg 2 x a day, amitriptyline 50mg at bedtime and Trileptal 150mg a day. Think thats all, cant remember for sure. lol

 

I am so thankfull to have found this website! Everyone here is so wonderfull!

Posted 2/25/2012 11:31 AM (GMT 0)
Great idea Suzane.

I'm Laura - 27 and from SE Australia, where I live with parents, brother, 2 dogs and cat. I hurt my knee part way through a 3-day hiking trip in 1999, when I was 14, and made a bigger mess of things by walking another 20km on it the next day. As we now know, the surgery to clean it up triggered Complex Regional Pain Syndrome. I went through a bad time with the surgeon, who accused me of malingering, hysteria, hypochondria, and finally offered me a psychiatric referral. The surgeon I went to for a 2nd opinion turned out to be a good mate of the one who did my knee. I had quite a bit of improvement with physio, but hurt my knee again in 2005 and again needed surgery - which made the CRPS much worse and was finally diagnosed. Been passed through a couple of PM doctors now because they don't know how to manage my pain and I've developed so many other issues along the way that all are a bit stumped.

I think my signature has it all, or at least most - but as of now -
Full body CRPS
Dystonia with equinovarus deformity
Gastroparesis
Orthostatic hypotention
HR control issues
Osteopaenia & Osteoporosis - with multiple thoracic compression fractures
Lumbar disc bulges
Bilateral carpal tunnel syndrome
Currently also having problems with fevers and fatigue of unknown origin.
Bursitis (feet)
Posted 2/27/2012 3:42 PM (GMT 0)
I'm Aaron. I am 27 years old and live in Kansas with my parents. I have a girlfriend who just turned 25 and a dog named Buddy.I work for a contractor providing technical support for military exercises around the world.

When I was in 5th grade, I was hit by a ball in my right knee which caused my kneecap to dislocate. I found out that I have a birth defect in both knees that causes my kneecaps to float freely instead of fitting into the knee. I had 2 surgeries to try and fix my right knee, the last one seemed to be effective but over time my kneecap has migrated once again. I am looking at knee replacements for one or both in the future and Arthritis is almost guarenteed.

Then at 16 I found out I had scoliosis, along with scheuermann's disease. How that had been missed for so long I don't know. I had terrible pain in my lower back for several years, but it seemed to settle down for a while after about age 21. Since then it has returned with a vengence, and I have been diagnosed with degenerating disk disease as well. I consistanly frustrated with the lack of caring by my doctors. My spine specialist says that I don't need surgery, which is good, but won't do anything else to help. My old family doctor gave me Vicodin, but my new doctor won't even do that, I am living on 15 of them that was left over from last year. She got very akward with me after I mentioned going to pm, I just cannot seem to get them to understand. The Vicodin and Celebrex help, but not as much as I would like. I just wish someone would take me seriously and give me something other than yet another pt suggestion. Lately I have had another flare up, but my pain is now spreading to my arms, shoulders, and head. My family tries to be supportive, but also has unfounded fears of me turning into an addict. I am just glad to have all of you on these boards to talk to. You all understand what it is like. :-)
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