New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
Hi my name is Chrissy.....
4 Replies
SpEdTeacherInPain - February 17

I feel like this is my first day at AA or something like that. This is looong overdue though. I should have started to share my story months ago. So here goes, when I was in college about 7 years ago. I had just had a baby so I was at the tail end of having a Medicaid plan, I started having some pains in my chest and my back that felt like the pain before my gallbladder was removed. This pain was starting to get really bad. The Dr. tried the gastronomy route and checked everything starting with my stomach, intestines, colon etc (my sister has Chrons). Then, when nothing was found we started with my heart they found something (I don't remember because there has been so much information) and they actually gave me Nitroglycerin. Holy crap what a headache and for someone who is prone to migraines this particular treatment was like lighting a bomb in my head.

So, after the heart was clean and the pains continued the Drs. didn’t really know what do to at this point. So, we went back to the gastro Drs., they sent me to the specialists at the University of Michigan ,this strangely is a practice among Drs. in my area who treat patients on Medicaid. I saw specialist after specialist who found nothing significant. So here I am, back to square one. At this time I was taking 180 Lortab a month for pain and was seeing a pain Dr. and PA who was pretty much convinced there was nothing wrong with me. This was about a year after the initial visit for pain to the Dr. I was getting ready to start my student teaching when the strong pain in my chest began again. It was so severe that I missed several weeks of the two years of my internship (short story). Finally I graduated and found a job with teacher insurance Hallelujah!!!!

I immediately began seeing a new Dr who sent me to a specialist for my chest pain. I then had a bilateral breast reduction which included the removal of a breast implant that was pressing on some nerves. This was great, I felt pretty good after the surgery. He had put me on Methadone before the surgery for pain which was working quite well for all of the pain I was dealing with. When I had completed the surgery recovery this Dr. was pretty well convinced that my pain was over and that I was feeling a need for the pain medication. I am not especially fond of the pain medication; the fact that they take the pain away is the only thing that really makes me happy! I get the whole body dependency idea however, that does not explain the rest of my symptoms. This went on for awhile, we changed medications and he then decided to take me off from all of the medications. This went in totally the opposite direction and I went downhill very fast. So this was my first Dr. change. After changing doctors several times after this finally I was given a diagnosis of Fibromyalgia. At this point things were okay in my personal life. My family was taking things in stride and were being very supportive. However, this particular Disorder/Disease (what have you) is not easy to explain to people when you look normal, you have no physical issues but on the inside you feel like you are falling apart. I am at a point now where my family is becoming less supportive. This is scary to me. I know that much of it is due to my pulling away from them because it is sometimes easier that way. I say easier not because I don’t want to be with them by any means but because leaving the house can be hard. I need to change my life however, the first step is scary to take when you are so afraid of the pain that goes along with it.

Today is my birthday and I am hoping that reading your stories and getting your feedback will help me to find the strength I need to do what it takes to get back into my life.

 

mdak - February 17

to spEdteacherin pain- Your message is what a lot of us has gone through. I have learned over many many years with this that I have accepted it and I am working with my body. lol. I know I have pain, so I look what can I do to have less pain. If I know something causes me more pain, I just dont do it. I keep my pain undercontrol. If pain is under control it helps with so mnay other problems I have with FM. I have less depression for sure. I rest more, yes I had to give things up in life. I hate it, but I can get through the day much better. I eat well. I let all my family members know and work place. It has taken some time for all this to happen, but instead of fighting this disease, I have accepted it. I know that sounds like nuts, but it works for me. I also have a spiritual side of me that has help so mcuh. I am just learning how to improve my marriage. I have been reading some material and it has help. My husband has noticed a difference. I hope you start feeling better soon. Happy Birthday!!!!!!!!!!!

 

Fantod - February 17

Hello Chrissy - Welcome to the board and Happy Belated Birthday!

Your story is so common among people with Fibromyalgia (FMS). We seem to be saddled with doctors who don't have the first clue about this syndrome, don't think it exists or flat out just don't want to treat it.

FMS is a disorder of the central nervous system that causes widespread chronic pain. It is recognised by the National Arthitis Foundation, the Centers for Disease Control and the World Health Organization. There is no cure but it can be managed with certain classes of prescribed medication.

I'd like to recommend that you go on the Amazon website and purchase "Fibromyalgia for Dummies." Like all of the dummies series, it contains good basic information about FMS. Read it yourself and pass it on to family members and friends.
Knowledge is power.

You can also go online to the National Arthitis Foundation website and use the "search" function to find the information on Fibromyalgia. Send links to friends and family.

Many people assume that a pill will fix everything which is not the case with FMS. Pain is subjective. Other people can not see it or experience what you are going through so if you look OK to them than you must be just fine.

One of the reasons that you are so sore and tired is lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Amitriptyline is usually prescribed for sleep issues associated with FMS.

Diet is very important. Eat smaller meals more often throughout the day. High protein will help keep your blood sugar stable and keep your fatigue level from constantly bottoming out. If you use anything with an artifical sweetner - get rid of it. That includes Splenda. A sweetner made with the nontoxic Stevia plant like Truvia or Sun Crystals is fine. Avoid deep fried foods, lunchmeat and red wine (nitrates) as they will probably make your pain levels worse.

There are three prescibed medications used to treat FMS. They are Lyrica, Cymbalta and Savella. Your post does not make any reference to the medications that you are currently taking.
We could probably be more helpful if you are willing to share that information. I will say that the longer a chronic pain cycle continues, the harder it becomes to manage or stop. It is very important that you work closely with your doctor and don't stop taking your meds without telling them.

If you want to find a fibro-friendly doctor in your area there are a couple of options. Go online or call your local hospital and ask for the physician referral service. They should be able to match you up with a rheumotologist and/or a pain specialist (I have both) that has an interest in FMS. Or, you can go online to the National Fibromyalgia Association website and see a list of healthcare providers for your state.

And finally, the best advice that I can give you is to be grateful for anything that you can accomplish as opposed to things you can no longer manage. Living with FMS is not easy but it can be done if you break things down into more managable increments, delegate and learn to say "no" and not feel guilty about it. It does sound like you are really struggling to come to terms with your illness. I'd like to gently suggest that you give some consideration to seeing a counselor for extra support. If you can find someone that uses Cognitive Behavioral Therapy, they will give you tools to help you cope. You are not alone. Take care and God Bless.

 

SpEdTeacherInPain - February 18

I truly appreciate your responses. Sometimes all It takes is some validation. I started taking Pamelor while I was seeing the gastro specialist as this is the medication that is given for pain in the belly region I was told (it is an old antidepressant). After the Pamelor was stopped as it did nothing, I returned to my general physician and he started me on Cymbaltal. This was in place of the Prozac that I had been taking. After the Cymbalta I did end up taking Lyrica which increased the swelling, pain and numbness/tingling in my hands feet face etc. (Funny note,the Dr. I had at this time actually said to me that "well, since Lyrica doesn't work you must not have FMS" This Dr. did start me on Topamax which does cause some numbness however, nothing like I saw with the Lyrica. So I am still on the Topamax which has brought my migraines down to a tolerable level. I am currently going the route of the big meds, I've been on a duragesic patch for a couple of years. This has kept me able to work and manage my job which can be pretty physically demanding. My stress levels are through the roof mostly due to my job and then because my husband does not understand FMS and my mom who is a nurse keeps telling me "to just get up and move, you'll feel better." I learned a long time about doing the things I know I can do asking for help with the other things. The problem there is working through the guilt. I also have to stop working really hard on my good days because I know darn well that a bad day is just around the corner because I am working so hard. My biggest goal currently is finding and getting in with a good massage therapist/ "bodyworker" and maintaining this regularly, eliminating stress by asking for help, finding the right counselor for both myself and my husband and learning to enjoy the parts of life that I still can be a part of. This is the first time I have really started to talk to people who understand. I have been on prozac for so many years I feel like I have been a robot to any emotion. I stopped taking it in favor of trying elivil for awhile and am finally feeling actual feelings. While I realize they might induce some stress, this is the first time in a year I have been motivated to change my situation. So, it is good to feel those feelings no matter how many days in a row I end up crying while watching a stupid episode of the Golden Girls. Anyway, thanks again!!

 

Fantod - February 18

Chrissy - Look under the "general discussion" area about Skype. Several of us are on it and it does help a lot to talk to other people one on one. Skype is free between other users any where in the world. It is very easy to use.

Incidentally, your mother is correct to some extent. It is really hard to be motivated when pain levels are bad. But, if you can manage to take a short walk or maybe look into a Tai Chi DVD that you can do at home that would help on a lot of different levels. You'll certainly reduce your overall stress and believe it or not you may not be as sore and tired once you get used to it. The key is not to overdo it and start very slowly.

Take care and keep in touch with us.

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question