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Date Joined Jun 2010
Total Posts : 14
Posted 6/16/2010 3:30 PM (GMT -6)
I am new here and would like to share my story. I am a thirty-five year old mother of three. I have a 16 yr. old daughter, 10 yr. old son, and an 18 mo. old daughter. And boy do I have my hands full! When I'm not changing diapers, I am texting my 16 yr. old and reminding her not to drinking and drive (or drink period!) or ride with anyone drinking... And my son is in a Division 2 baseball league, that requires alot of traveling.
I will try to make this long story as short as possible. During my recent pregnancy, I was having a lot of back pain from an old injury to my spine. I couldn't wait to have her and get out of this pain. Little did I know that was just the beginning. When she was just 3 mos. old my husband and I lost our home as a result of him losing his job. We moved to a much smaller home and no one was happy about
it. My 16 yr. old went to live with my parents after much fighting about
who was to blame for losing our home. (No one said blending a step family would be easy, especially with a teen.)I started to slip into a terrible depression. That is when I began noticing odd things happening to my once health body. My shins ached, my muscles felt exhausted, my legs would vibrate from the inside out, I couldn't stand to be touched, (it physically hurt for my kitten to brush against me) my hands ached and my fingers felt like I had rubberbands around them, my knees hurt when my pants would rub against them. I could go on & on. I didn't know what was going on! My family doctor ordered an MRI of my brain, that came back normal. He referred me to pain mgmt. I was put on 4 Lortab 10mg a day. Which helped the pain for a couple of hrs. and I continued to have all the other issues with my body. The pain doctor did not want to look into it and just kept giving me pain medication. He finally ordered an x-ray, after much hesitation. It came back "NORMAL." After 8 mos. of this I went to a Chiropractor (I've been to several over the years and never had much success-actually it made it worse.) But I was desperate. He also did an x-ray and he said I had 2 pinched nerves and refferred me to a Nuerologist. He also diagnosed me with Fibromyalgia. I had to wait 2 months to get into the Nuerologist. They confirmed the Fibromyalgia and ordered a CT Scan of my spine. They also diagnosed me with Facet Joint Syndrome, (with arthritis) Restless leg Syndrome, and Pernicious Anemia. They also tested me for RA and it came back "NEGATIVE." The Nuerologist referred me to an Orthopedic doctor (who was so mean to me!
) He even
threw down his equipment
with me! By this point, when I would tell doctors that the pain medication only helped for a couple of hrs. they assumed that I was a "Seeker." But the Ortho. doctor did tell me that you can test negative for RA when you are actually positive for it. I went back to the Neurologist because the Ortho. doctor said he couldn't help me. The Nuerologist ended up dropping me as a patient. By this point I was at the end of my rope. I felt so hopeless! Even though I had already been diagnosed with terrible health issues, I knew there was still more going on. I went back to my family doctor and he referred me to a wonderful Rheumatologist. She was so compassionate and she confirmed that a negative Rheumatoid Factor doesn't rule out Rheumatoid Arthritis. She did a panel of blood test and I just got the results yesterday. I do in fact have RA. My CRP test came back very high. This test measures the protein in your blood. My white blood cell count was also very high. And I was also diagnosed with Scurvy- a rare Vitamin C Defiency. (Like I needed something else added to my list of diseases and syndromes!) But I have to keep positive thoughts and be grateful that after a full year of unexplained health problems, we finally got to the bottom of everything.
I can't even explain how sick I am some days! I honestly have laid in bed praying that I would die. At the age of 11, I watched my identical twin die from a massive asthma attack. I have questioned God, asking why
lived if I am going to be in misery.
My quality of life has gone completely downhill. And to make matters worse. I lost my job 4 months ago. I had been the Childcare Director of a School Corporation, overseeing five other ladies and two schools for 7 yrs. I loved my job! The children there were like my own. The school was aware of my recent health issues, but showed no mercy! On the days that I was running to the bathroom to throw up (sorry!) I would go on home and work from my home computer. I had to keep my program running smoothly inspite of my health. In February, I was called into a meeting where I was repramended for taking work home and was placed on a 2 wk. suspension. A few days later I get a knock on the door and it is a police officer. He wanted me to go to the station. I was freaking out and didn't know what was going on, my mind was racing. When I got there, I was informed that the school wanted to have me arrested for "Timesheet theft." Since I had left the school grounds with paperwork and got paid for working, I had apparently commited a "crime." I am still waiting to see if an arrest warrant will be issued.
My husband is still unemployed. We had to move again! We are in a 2 bedroom home with 3 children! We are surviving on unemployment benefits. I feel terrible that my health has put such a burden on our family. My out-of-pocket medical expenses are almost as much as our rent. I think about
how much I could do for my children with the money I am spending to survive. But I am a strong Christian and I know that GOD will not put more on me than I can bare! This to shall pass.....And my family will be stronger because we made it!
I hope that someone out there has taken the time to read this- Sorry it is so long. And I still have thoughts racing through my mind. I could write for days! If anyone has any comments/questions about
their own battles, please feel free to contact me at my personal email address:
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Date Joined Nov 2007
Total Posts : 6795
Posted 6/16/2010 4:02 PM (GMT -6)
Welcome to the chronic pain forum of Healing Well, although I certainly wish you hadn't gone through everything that's brought you here.
On top of all your health issues, and your husband losing his job, to be brought to the police station???? What a heartless employer - although I have to say I had one, too. I was laid off from my part time job, that held my health care benefits, while out on medical leave for back surgery. I didn't work enough hours to be covered by FMLA. It's so sad that far too many employers behave this way. Have you consulted an attorney yet? Because it seems that your employer may be really taking an extreme position, and you need to protect yourself legally.
You will find most of us have long stories, so don't worry about
your post being too long. One thing though, you may want to put your e-mail in your profile and take it out of your post, so it's more protected from spammers. You can do this by going to the "control panel" and setting up your identity info. as you want. You can edit your own posts by clicking on the "pencil" icon in the upper right corner of your post, although only moderators can edit the posts of other people.
It helps to read the forum rules, as this is a good place for support, but it's a moderated forum by volunteers who suffer from the same condition, and I think it's what helps keep this place a bit different from other forums.
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Date Joined May 2010
Total Posts : 594
Posted 6/16/2010 4:18 PM (GMT -6)
Hello Shannon and welcome to the forum! I am so sorry to hear about
all of the suffering you are going through! You have an awful lot on your plate right now!! You will find that this is a wonderful caring group of people and there is always someone to listen. It is really hard when you have a financial struggle along with medical problems. I can certainly relate to that. I lost my job and had no insurance for 4 months until my husband and I finally decided that no matter what it took we had to pay my COBRA, which involved back paying 4 months. I just have to much going on not to have insurance. Just the medication alone will kill you. Fortunately with my insurance, I get generic prescript
ions for $10.00 for a month. Can you or do you have COBRA insurance? Also, there are many Pharmaceutical Companies that will help you with the costs of you medications. The receptionist at my doctor's office, whom I just love, helped me to get one of mine a no cost. Please know that many, many of us have had doctors look at us like we were drug seeking! It hurts, but unfortunately pain pills are the drug of choice for a lot of abusers, so do not take it personally. Like you did, we all just need to find a doctor who understands CP and believes us! We will talk more later, because much of what you have said, I can relate to, but this was meant to just welcome you to our family!! Hang in there and stick around here.....we have an amazing bunch!!
Take care of you,
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Date Joined Feb 2003
Total Posts : 14324
Posted 6/16/2010 4:56 PM (GMT -6)
Welcome to Healing Wells chronic pain forum. I am glad that you found the forum but sorry that you have to be here. Your story has many twists and turns like so many others here at the forum. One of the biggest problems is finding drs that are willing to invest the time in finding out what is wrong with a patient. So many drs just want to get a patient in and out, they don't want any glitches to pop up either. You will find more and more people are having to advocate for good medical care. But our healthcare system is another story for another day, lol.
I am so glad that you have a good rheumatologist taking care of you. As you already know from your own personal experience a good dr can make all the difference in the world. Just knowing and having a diagnosis means a lot to a person. When the drs look at you and say I can't find nothing wrong or I don't know what is wrong, you get stuick in such a limbo and end up with no care, yet the problems persist. Hopefully your good dr can now put a treatment program together for you and get you back on your feet. My sister has RA so I know about
it somewhat, many of our members here have Fibro. We do have forums here at Healing Well for both Fibro & RA and you may want to check those out too. Has your dr started you on any of the medications used for Fibro such as Lyrica?
If you will look at the top of the posts here you will find a post called CP101 that you may want to check out. There is a wealth of information there and info on how to find out if you qualify for medication at a reduced rate to actually getting some meds free, so please look in to it.
Again, welcome aboard and keep us posted on how you are doing.
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other
issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.
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Date Joined Jun 2009
Total Posts : 2787
Posted 6/16/2010 6:46 PM (GMT -6)
Good evening! Welcome to the Chronic Pain forum in the Healing Well Community! My name is Dani. It is so very nice to meet you. I hope you find this is a relaxing environment to be in. Though I am so sorry for what brought you here... I am glad you found us. I can tell you will fit right in.
One thing that jumped out at me after reading your post is that.. You have had a very hard time the last 2 years. VERY hard. I am terribly sorry that you have had such painful experiences on top of suffering from painful chronic conditions. Honestly, I do not know anyone who could withstand so much and still reach out to others. Most would have withdrawn from the world around them. Yet here you are. There is something to be said for that.
Like susie has mentioned, I too wonder if you have tried lyrica or cymbalta for help with your Fibro? Here are a few links I think might help....
Most of all I want to welcome you to the community. It is very nice to meet you and I look forward to getting to
know you better as time goes by. Please, know you are in our hearts here.
Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator
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Date Joined Jun 2010
Total Posts : 14
Posted 6/17/2010 1:33 AM (GMT -6)
Thank you for all of the encouraging words! Yes, I have tried Lyrica. I was increased to the highest dosage and it still didn't help me. I haven't not tried Cymbalta. I have tried Pristiq & Savella. Didn't care for either, and back on Lexapro. The most frustrating thing now is getting my pain medication straightened out w/ my ins. They will not pay for both Percocet & the Duragesic patch. I'm paying almost $400 a month for the Duragesic patch. But it has made the difference between "Living" and "Existing." I know that will make sense to other pain sufferers! Maybe not insurance companies or doctors.......but follow sufferers! - I'm gonna try to go back to sleep, it's 3:30am! Bye for now.
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Date Joined Dec 2005
Total Posts : 256
Posted 6/19/2010 2:56 AM (GMT -6)
Be careful with Cymbalta, if you decide to try it. It has caused many people tremendous problems, and I myself experienced HORRIFYING, bizarre side effects. My limbs would randomly jerk...no twitch, but actually kick/punch out uncontrollably with great force and no warning.....whenever I would lay down and while I was asleep. While asleep, or just relaxing, my arms would raise up by themselves as if by anti-gravity or floating underwater, and "hang" almost straight up while I slept. I also didn't feel too great in general while I was on it.
That combined with the fact that it causes dependency as bad as, or worse than, any other medication....I am most definitely not a fan. It may help certain conditions, but I think that it's rarely worth the side effects/downsides.
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Crohn's Disease, Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, As Yet Unknown MS-Like Relapsing/Remitting Neuropathy, and a partridge in a pear tree.
Medications: Currently not that many are taken daily, but there are many at my disposal for part-time use. Low dose pain medication, after years at high doses. Working on innovative ways of taking lesser-known pharmaceuticals and non-prescript
ion supplements to maximum benefit.
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Date Joined Jul 2005
Total Posts : 229
Posted 6/21/2010 3:09 AM (GMT -6)
Welcome! I'm sorry that you are having so many problems but you have definately found the right group of people to talk to. They are so understanding and supporting that I feel blessed to have found them.
I know the feeling of going through the route of doctors who either don't take you seriously (usually because you are a woman) or that they just don't want to take the time with a patient who has chronic problems that they will have to deal with. Some doctors run their offices like MacDonald's......almost like a drive thru office...come in, here's a script
and then out the door to the next patient. Heaven help us if we have a question to ask.
I'm sorry that Exitwound had such problems with Cymbalta but it has been a saving grace for me. Usually I could predict a rain storm coming miles away, even before the TV news announced that it was coming. Not now. That has been one of the few meds I have had that have worked wonderfully for me....no weight gain, no nausea.
I have multiple health problems and am the mother of three but they are grown and all are married with babies of their own. Right now my biggest problem is that I'm fighting Complex Regional Pain Syndrome and it has been the thing that I have ever had. Talking to the great people in this group has helped me more than I can say. So stick with us and even if we can't make it better we will sure listen to you and feel your pain with you.
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, bilaterial knee replacements, total left shoulder replacement, years of chronic headaches and chronic pain, asthma.
Find blessings in every day!
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Date Joined Sep 2009
Total Posts : 1176
Posted 6/23/2010 4:28 PM (GMT -6)
I'm so sorry for all you're going through: the financial strain, the incredibly EVIL employer(!!), and on top of it all that it took you
long to find a compassionate doctor....
I just wanted to let you know that I can definitely relate to your story! Especially the part about
seeing many doctors and having them doubt your motives and not getting a diagnosis for months and months....it's agonizing to be that sick and yet have no answers and no doctor who will help you.
I'm really glad to hear that you DO have some answers now, but in a case like yours (and mine), where there are SO many symptoms, and so much pain, it's usually a good idea to get tested for Lyme disease too. Many people think it's a rare disease that's hard to get but actually it's all over the place and Lyme-infected ticks can be brought into your own backyard by birds or dogs or cats or raccoons or whatever. It's the most common tick-borne disease in the Northern Hemisphere. And Lyme disease produces symptoms EXACTLY like those you describe. Most people with Lyme don't remember a tick bite and never had the "bullseye" rash.
I'm not discounting any of your current diagnoses! I believe that you have RA, etc.....Lyme disease can both mimic and trigger autoimmune diseases (like RA). In me it triggered lupus, RA, autoimmune hepatitis, and fibromyalgia. I'm being treated for Lyme disease now, and I don't know if any of my AI diseases will go into remission after I'm done with treatment.
I truly hope you DON'T have Lyme, but would like to encourage you to get tested, even if you think it's
. I thought it was impossible for me, but had a positive blood test. FYI, there are many false negative when testing for Lyme disease, so even a negative test does not rule it out.
Best wishes and ((((((hugs)))))))
Lyme Disease, Babesiosis, Ehrlichiosis
, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, oste
openia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel,
IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP
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