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Old 06-13-2009, 07:18 PM   #1
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New to Board,Recently Diagnosed with Fibromyalgia, Chronic Fatigue, new to Pain Mgt

Hi all, I found this forum about a week ago and have been coming on here to read others posts, but have finally decided that I should write and get some feedback from others in the same situation as me. I apologize in advance for the amount I write, I just really want to get some background out there. Thanks in advance for any advice.

Brief history of me: When I was 18 my doctors thought that I had depression and was put on numerous different anti-depressants at separate times to figure out which worked best. Over the years I had ups and downs and was stabilized for periods of time on different drugs but none that ever lasted. I had several periods where I would 'go off my rocker' as my mother would say and I would end up doing stupid, reckless & compulsive things which sometimes got me into trouble and others not. That behavior seemed to stop after I met my boyfriend (now of 6 years). I've been stable on Lexapro now for about four years. About two years ago, I got accused of something from a former employer that I didn't do, that has resulted in a 2 years court battle that is still outgoing. Needless to say there is HUGE stress associated with this. Jan of 08 I ended up having to have a back surgery for herniated disks at L4/L5 and L5/S1 which ended up throwing me physically and mentally into a total wreck. Luckily I was able to get a job doing accounting where I can work mostly from home which has been wonderful for me.

The last six months have been particularly difficult for me. I found myself wanting to sleep all the time and would 'sleep' for 9-11 hours a night but would wake up still exhausted. I could wake up at 10 am and be ready for a long nap by 12 or 1. Even with all the sleep, I never felt rested. I started seeing my doctor about it and we found out that my iron levels were low, probably because I'm a vegetarian, so we started an iron supplement. All of the other tests were normal. She told me the usual, get good rest, try to go to bed at the same time and get up at the same time every day, watch your diet and make sure to exercise.

After trying this for several months, nothing seemed to help. I started to develop insomnia as well as intense fatigue. I would be so incredibly tired, but wouldn't be able to sleep. About 4 months ago I started developing incredible pain all over. I'm used to the chronic pain in my back, but this was ridiculous. My bones and joints would hurt, ligaments and tendons seemed to hurt and I always had muscle aches. My doctor requested that I keep a journal of how I was feeling, my food and exercise log and a record of when I was in pain, etc... We tried fast acting narcotics for pain (Norco), a muscle relaxer for spasms (Soma), and Valium and Triazolam for sleeping. When nothing worked we tried adding Seroquel. Worked great for sleeping, except I would end up sleeping 20-24 hours and then would be in horrible pain when I would wake up. I would get parasthesias (burning and tingling sensation) under my skin under some of my large muscles, feel constantly tired and exhausted. It really started to affect my relationships with my mom and my boyfriend. They thought I was just being lazy all of the time, staying in bed for hours or days at a time. We ended up fighting constantly about it. Even I couldn't understand why I couldn't wake up and stay awake for several hours without being so tired or do simple things around the house. I would get so tired and hurt all over if I just cleaned the house or did dishes. Sometimes when I would get tired, I'd even have trouble catching my breath (maybe it was anxiety, but I'm not sure). I was starting to get so down on myself thinking that I was just falling into another depressed funk and couldn't get out of it.

Finally after more months of journaling and hit or miss drugs, my doctor finally came to a few diagnoses last Friday. She diagnosed me with Chronic Fatigue Syndrome and Fibromyalgia. She has now put me on a long lasting narcotic medicine (Fentanyl) for the pain, some fast acting pain meds for break through pain (Norco), muscle relaxers (Soma) when needed and Valium for sleep. Since starting this regime (8 days now) I have started to feel better. I'm able to fall asleep fast and stay asleep through the night and wake up feeling rested (even if only sleeping 5-6 hours). Unfortunately my boyfriend decided he coudlnt' take it anymore and we split up last Thursday before I had a chance to get these diagnoses from my doctor. Since last week, I've been able to clean my house (a huge mess), clean litter boxes and stay somewhat active. Today was the first time since starting my meds that I have had to take a nap and it was only a short one. Yay. Today I did feel pretty tired all day and was hurting despite having just taken my long lasting pain meds. We're still working on adjusting my med doses for the future.

My concern is that I won't ever be able to deal with this on my own. I do NOT want to stay on narcotics and muscle relaxers forever. I want to know how any of you cope with your Fibromyalgia on a daily basis and how do you function. I dont want to give up my life but am not sure how to keep going every day once I get off the medicines. Also, how do you deal with the stigma of FMS not being a 'real disease'. I'm so scared of judgement from people and not sure how to explain it to all them. If any of you have any coping suggestions or recommended reading, I would greatly appreciate it! I'm sorry for writing so much, but I wanted to provide a background for what I'm dealing with. Thanks so much and have a great weekend everyone.
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Old 06-13-2009, 09:07 PM   #2
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Re: New to Board,Recently Diagnosed with Fibromyalgia, Chronic Fatigue, new to Pain M

Welcome and happy you found us here. We all do try to give our best opinions and all here. Almost like having invisible friends, we all never meet in person but we can sure relate our journey.

I'll briefly see what i come up with here. Your post is long but very much detailed and that's good.

I have found it is almost impossible to explain my fibromyalgia to any family or friends. Fibromyalgia varies day to day and i have learned to keep my health issues to my immediate family. (husband , mom, brother). Having a sister in the medical field does not understand fibro so i don't bother if you know what i mean. The less stress i have is better for me.

If your medication is keeping your pain under control that is wonderful.
I have pain that just never wants to leave, so under doctors care making some changes due to tons of weight gain from these meds.

If you are wanting to make med changes please do this with under your doctors care. Not all medications react the same to all.

Welcome again and post & vent as we're all here to listen,
BeHappy2

 
Old 06-13-2009, 09:28 PM   #3
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Re: New to Board,Recently Diagnosed with Fibromyalgia, Chronic Fatigue, new to Pain M

Thank you BeHappy

I appreciate your kind words. I think you are right. It doesn't seem that many other people understand this disease or CP and they just think i'm faking it. I was scared that my mom and best friends would be the same way about it. When I first got the diagnosis and told them about it, they were kind of skeptical about it. I sent them several links to info on Fibromyalgia and Chronic Pain and after they had read them and had a chance to really sit down with me and talk about it, they have been very supportive. This past week, one of my best friends driven me to my office a few times to pick up my work. (I'm really lucky at being able to work at home) because I didn't feel as if I could drive on the Fentanyl yet. My mom and I have two houses on the same property and today I took a bunch of laundry over to her house to wash and did some housecleaning. I didn't even have to tell her (she could just tell by talking to me) that I was hurting really bad after cleaning and she finished doing my laundry for me. I feel so guilty sometimes getting help from people. I'm still young. I'm only 26 and my 65 year old mom is having to help me with my laundry...
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Last edited by New To CP; 06-13-2009 at 09:30 PM.

 
Old 06-13-2009, 11:36 PM   #4
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Re: New to Board,Recently Diagnosed with Fibromyalgia, Chronic Fatigue, new to Pain M

You are young and so fortunate to have a mom who understands and is helping you with laundry and all.

It's good you have someone to drive you since you began with the fentanyl.
There is a good information post on Fibro board page 3 i think it's titled
pain medication to watch out for. It's about the fentanyl , of course everyone reacts differently to meds but that post is well worth the read.

We're all here to be of help and suggest what we can.
Post even to vent, we listen.

BeHappy2

 
Old 06-14-2009, 12:03 AM   #5
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Re: New to Board,Recently Diagnosed with Fibromyalgia, Chronic Fatigue, new to Pain M

BeHappy,

Thanks again. I truly appreciate the answers, guidance and suggestions. It's great to know that there is a place to vent frustrations if needed. I'm going to go look for the post on the Fibro page about Fentanyl. Thanks again.
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Old 06-14-2009, 02:12 AM   #6
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Re: New to Board,Recently Diagnosed with Fibromyalgia, Chronic Fatigue, new to Pain M

Quote:
Originally Posted by New To CP View Post
Hi all, I found this forum about a week ago and have been coming on here to read others posts, but have finally decided that I should write and get some feedback from others in the same situation as me. I apologize in advance for the amount I write, I just really want to get some background out there. Thanks in advance for any advice.

Brief history of me: When I was 18 my doctors thought that I had depression and was put on numerous different anti-depressants at separate times to figure out which worked best. Over the years I had ups and downs and was stabilized for periods of time on different drugs but none that ever lasted. I had several periods where I would 'go off my rocker' as my mother would say and I would end up doing stupid, reckless & compulsive things which sometimes got me into trouble and others not. That behavior seemed to stop after I met my boyfriend (now of 6 years). I've been stable on Lexapro now for about four years. About two years ago, I got accused of something from a former employer that I didn't do, that has resulted in a 2 years court battle that is still outgoing. Needless to say there is HUGE stress associated with this. Jan of 08 I ended up having to have a back surgery for herniated disks at L4/L5 and L5/S1 which ended up throwing me physically and mentally into a total wreck. Luckily I was able to get a job doing accounting where I can work mostly from home which has been wonderful for me.

The last six months have been particularly difficult for me. I found myself wanting to sleep all the time and would 'sleep' for 9-11 hours a night but would wake up still exhausted. I could wake up at 10 am and be ready for a long nap by 12 or 1. Even with all the sleep, I never felt rested. I started seeing my doctor about it and we found out that my iron levels were low, probably because I'm a vegetarian, so we started an iron supplement. All of the other tests were normal. She told me the usual, get good rest, try to go to bed at the same time and get up at the same time every day, watch your diet and make sure to exercise.

After trying this for several months, nothing seemed to help. I started to develop insomnia as well as intense fatigue. I would be so incredibly tired, but wouldn't be able to sleep. About 4 months ago I started developing incredible pain all over. I'm used to the chronic pain in my back, but this was ridiculous. My bones and joints would hurt, ligaments and tendons seemed to hurt and I always had muscle aches. My doctor requested that I keep a journal of how I was feeling, my food and exercise log and a record of when I was in pain, etc... We tried fast acting narcotics for pain (Norco), a muscle relaxer for spasms (Soma), and Valium and Triazolam for sleeping. When nothing worked we tried adding Seroquel. Worked great for sleeping, except I would end up sleeping 20-24 hours and then would be in horrible pain when I would wake up. I would get parasthesias (burning and tingling sensation) under my skin under some of my large muscles, feel constantly tired and exhausted. It really started to affect my relationships with my mom and my boyfriend. They thought I was just being lazy all of the time, staying in bed for hours or days at a time. We ended up fighting constantly about it. Even I couldn't understand why I couldn't wake up and stay awake for several hours without being so tired or do simple things around the house. I would get so tired and hurt all over if I just cleaned the house or did dishes. Sometimes when I would get tired, I'd even have trouble catching my breath (maybe it was anxiety, but I'm not sure). I was starting to get so down on myself thinking that I was just falling into another depressed funk and couldn't get out of it.

Finally after more months of journaling and hit or miss drugs, my doctor finally came to a few diagnoses last Friday. She diagnosed me with Chronic Fatigue Syndrome and Fibromyalgia. She has now put me on a long lasting narcotic medicine (Fentanyl) for the pain, some fast acting pain meds for break through pain (Norco), muscle relaxers (Soma) when needed and Valium for sleep. Since starting this regime (8 days now) I have started to feel better. I'm able to fall asleep fast and stay asleep through the night and wake up feeling rested (even if only sleeping 5-6 hours). Unfortunately my boyfriend decided he coudlnt' take it anymore and we split up last Thursday before I had a chance to get these diagnoses from my doctor. Since last week, I've been able to clean my house (a huge mess), clean litter boxes and stay somewhat active. Today was the first time since starting my meds that I have had to take a nap and it was only a short one. Yay. Today I did feel pretty tired all day and was hurting despite having just taken my long lasting pain meds. We're still working on adjusting my med doses for the future.

My concern is that I won't ever be able to deal with this on my own. I do NOT want to stay on narcotics and muscle relaxers forever. I want to know how any of you cope with your Fibromyalgia on a daily basis and how do you function. I dont want to give up my life but am not sure how to keep going every day once I get off the medicines. Also, how do you deal with the stigma of FMS not being a 'real disease'. I'm so scared of judgement from people and not sure how to explain it to all them. If any of you have any coping suggestions or recommended reading, I would greatly appreciate it! I'm sorry for writing so much, but I wanted to provide a background for what I'm dealing with. Thanks so much and have a great weekend everyone.
Hi, hun! Can I ask how to tell if you have CFS? I think I may have it. I'm having sleeping problems 4 hours a night. sigh.

How to deal with the pain? I just take one day at a time. Use ice packs, Take HOT HOT SHOWERS. Moist heating pads. Tylenol, Pamprin. It's not easy
sometimes you just want to cry.

I hope your feeling better.

 
Old 06-14-2009, 02:25 AM   #7
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Re: New to Board,Recently Diagnosed with Fibromyalgia, Chronic Fatigue, new to Pain M

I feel so bad for you but yes I do remember th times and It only been10years for me and I have to say that this has been one of the roughest weeks that I have ever had my pain is 7-9 and when I think that thing can't get any worse my husbond comes home and then he wants to fight and I just don't have enough energy for that.... and right now I don't even have enough energy to write any more so good luck and God Bless
Kimmie- Kat

 
Old 06-14-2009, 03:39 AM   #8
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Smile Re: New to Board,Recently Diagnosed with Fibromyalgia, Chronic Fatigue, new to Pain M

Hi SnowBunny,

Well one good place to start looking at symptoms and such is on the Mayo Clinic's website. After getting diagnosed I went on there and was able to do a lot of research on the disease. I'm guessing you have Firbromyalgia (since you are on this group) and wanted to let you know that it is VERY common for people with FMS to also have CFS and vice versa. From what I've seen and learned about so far, generally most FMS patients also have chronic fatigue, so it's very possible that you may be fighting that as we.. See below:


Chronic fatigue syndrome is a flu-like condition that can drain your energy and, sometimes, last for years. People previously healthy and full of energy may experience a variety of signs and symptoms.

People with chronic fatigue syndrome exhibit signs and symptoms similar to those of most common viral infections. Unlike flu (influenza) symptoms, which usually subside in a few days or weeks, the signs and symptoms of CFS can last much longer. They may come and go frequently with no identifiable pattern.

Primary signs and symptoms
In addition to persistent fatigue, not caused by other known medical conditions, chronic fatigue syndrome has eight possible primary signs and symptoms. Chronic fatigue syndrome symptoms include:

Loss of memory or concentration
Sore throat
Painful and mildly enlarged lymph nodes in your neck or armpits
Unexplained muscle soreness
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Sleep disturbance
Extreme exhaustion lasting more than 24 hours after physical or mental exercise
According to the International Chronic Fatigue Syndrome Study Group — a group of scientists, researchers and doctors brought together by the Centers for Disease Control and Prevention (CDC) to determine a standard method for defining and diagnosing chronic fatigue syndrome — a person meets the diagnostic criteria of chronic fatigue syndrome when unexplained persistent fatigue occurs for six months or more along with at least four of the eight primary signs and symptoms.

Additional signs and symptoms
In addition, people with chronic fatigue syndrome have reported other various signs and symptoms that aren't part of the official definition. These include:

Abdominal pain
Allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
Bloating
Chest pain
Chronic cough
Diarrhea
Dizziness, balance problems or fainting
Dry mouth
Earache
Irregular heartbeat
Jaw pain
Morning stiffness
Nausea
Chills and night sweats
Psychological problems, such as depression, irritability, anxiety disorders and panic attacks
Shortness of breath
Tingling sensations
Visual disturbances, such as blurring, sensitivity to light, eye pain and dry eyes
Weight loss or gain


I hope some of this helps. Let me know if you have any other questions. I'd be more than happy to share my expeience with CFS. Have a great night!
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Last edited by New To CP; 06-14-2009 at 03:41 AM.

 
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