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Old 06-12-2009, 11:29 PM   #1
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Unhappy New to Board and Recently Diagnosed with Fibromyalgia

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 06-14-2009, 08:59 PM   #2
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Re: New to Board and Recently Diagnosed with Fibromyalgia

Hi New To Cp and Welcome .
I'm sorry you have had such a rough time of it, we have all been there at some time or other so hopefully we can offer some understanding and empathy to what you are going through.
I found over time that I seemed to 'get used' to pain being there. Infact, these days on the odd week or so when I actually feel well it is almost an unbearably strange feeling to me. I guess pain has become a strange not so nice companion, and with so many different and unpredictable symptoms it is the one thing I can rely upon to be constant and less changing. As for the rest, well I have learnt over time what sort of things trigger my symptoms. I cannot allow myself to overdo things and risk becoming tired (i get tired without doing anything so I certainly avoid adding to it). Stress really flares me up, so I have had to learn to 'let go' of the little stuff that used to bother me. I guess I have learnt to not sweat the small stuff. Weather changes really flare me up, particularly high humidity with high temperatures, so I keep out of the heat and have my home airconditioner/heater adjusted to keep me at the same temp and humidity most of the time. I seem to catch colds etc easily, and as my family and friends know this, they are kind enough to stay away when they have an illness that I could catch. I have slowed down, I still excercise, but only in small short bursts and nowhere near the level I used to. I sleep when I'm tired, and have stopped worrying if the housework doesnt get completed or if we have to have take out for dinner because I am not up to cooking. The Fibrofog still has me baffled as I am never sure when it will kick in, but I have learnt that there are times I simply cannot study or read. I write notes about everything as my memory is very bad, and I try to laugh when I forget things and to see the humour in it all. (of course sometimes that is hard, but I live by the motto if I don't laugh I will cry, and I'd much rather laugh). I have rough times when I can't get out of bed, but my biggest coping mechanism is to 'allow' myself to have these sick days. THe more I try to fight the symptoms or force myself to get up and be well the worse I usually feel. If I am dead tired, instead of going to bed, I lay on the couch in the living room so I am still around the family and feel involved. Anyway, hope some of this helps. there is a book out called Fibromyalgia for Dummies... it is very good for understanding the illness. Good luck and once again, welcome.

 
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Old 06-16-2009, 12:24 AM   #3
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Re: New to Board and Recently Diagnosed with Fibromyalgia

Cindy in Oz, Thanks so much for the encouraging and enlightening words. They meant a lot to me!!! I will get a copy of that book and I'm working on my 'coping' plan for flare ups. So far my friends and my mom have been incredibly understanding and helpful. I'm sure it's just about getting used to it and learning how to deal with it. At least I know what I'm up against now. Before it was SO frustrating because I had no idea what was going on with me! Thanks again and have a great week!
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Old 06-17-2009, 05:19 AM   #4
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Re: New to Board and Recently Diagnosed with Fibromyalgia

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 and welcome to the fibromyalgia board.

I humbly suggest that you take this one day at a time. and on your good days, don't overdo it and then use the pain meds to cover the pain. When you have a lot of good days in a row, then you and your doctor will be able to start cutting back on the meds.

I don't feel like there is a stigma with fms and cfs. I don't try to explain it to everyone. I just say that fms is a central nervous system illness that causes pain in my muscles. (I don't have cfs but work on a simple response that works for you) It is just too complicated to explain every detail and you need to get to the point where you don't care what they think. You know that you have real illnesses. You don't have to convince anyone.

In regards to your mom (and for you), i would get the book "Fibromyalgia and Chronic Myofascial Pain" by Devin Starlanyl. this book helped me more than i can say.

I cope on a daily basis depending on how I feel after an hour or so of being up. Sometimes, I feel really good and motivated and run errands and clean house. Other days, I am tired and achey and take it easy. You don't have to give your whole day to fibromylagia, lay down for a while and then have a gentle herbal tea maybe a soak in the tub. And ease back into your day. You don't have to spend the whole day in bed or in front of the tube.

I hardly ever have symptoms any more, but it will sneak up on me sometimes especially when a cold front moves in. I will even think i don't have fms anymore, but it always comes back.

Learn as much as you can. Get a good rheumatologist and pain mgmt doctor that treats fms and cmp. There are a lot of treatments out there. Be really gentle with yourself. And don't seek affirmation from people that aren't supportive it is so frustrating and belittling and will make you flare worse.

Malic acid and magnesium help. so does getting off of sugar. I

f you are having numbness or tingling or shooting pain this is probably cmp, so get the book so you know what it is and how it is treated.

None of us have the exact same symptoms. And you can't believe every thing you hear or read. I thought fibromyalgia for dummies was an awful book and should be taken off the shelves because it just made me crazy because they didn't cover about half of my symptoms. I was so relieved when i got the other book because she covers everything.

Take it easy. The more you stress out, the worse your flares will be. I hope the best for you. Keep posting and read some old posts.

rose

 
Old 06-17-2009, 06:16 AM   #5
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Re: New to Board and Recently Diagnosed with Fibromyalgia

New to CP

Sorry you have had to join the FM ranks :}

I understand your reluctance to Narcotics and muscle relaxers. I had the same issues for a while.

Here are some of the things I do that seem to help me. (medicine related and not)

Understand that all meds don't work the same for everyone, and the trick is finding your special combo that gives you the relief you need with the least amount of side effects.

Suppliments i take the top 4 every day

Magnesium for muscle pain
Malic acid for muscle pain
B-12 for energy
Vit D3
Valerian Root for sleep

For muscle spasms

Get a tennis ball. It is great for triggerpoints and releasing the muscle. Just put it under the spot and lay on it.

Yoga

I am religous in my yoga and stretching routines. Stretching twice a day seems to really help. I can absolutely tell the difference when I skip.

Medicines

I have taken just about any and everything at one time or another to get relief. My current regeme is

Zanaflex(anti-spasmatic) It is different from soma and gives me much needed relief Tried soma I started seeing things like pink elephants :}

Tramadol (synthetic narcotic) It does as much for me as the narcotics ever did with much less side effects.

Ambien cr (hypnotic) I have to have something for sleep. I can go weeks with only 1 hr or so a night without it. It is the only one that has ever helped me.

Daypro (antiinflammatory) It helps with inflammation and pain

Visteril (antihystamine) I use this for mild anexiety.

Neurontin (antiseizure) This blocks substance P and reduces pain levels

With this cocktail I am able to hold down a fulltime job and raise my family.

This is not to say that I do not go through my bad spells. The trick is finding the combo that works for you .

Hope this helps,

T

 
Old 06-17-2009, 08:46 AM   #6
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Re: New to Board and Recently Diagnosed with Fibromyalgia

Thanks to all on the replies!!!

Rosebuddy You are so right about taking each day at a time! Trying to plan the rest of my week, let alone the rest of my life can be extremely frustrating right now. Some days I'm gung ho and believe that I can conquer all, and some days I can't even conquer the task of getting out of bed.

I'm starting to see what you mean about not trying to explain it to others and often times they won't understand and sadly a lot of them don't care or may just see it as excuses for things you don't want to do.

I am definitely going to look for a copy of that book and start reading! I did read a few exceprt out of Fibro for Dummies, but it was way to generalized for me. I didn't feel as if there was anything in that book that I couldn't find on these boards or online easily.

I am thrilled though that with the new pain meds I'm on, my sleep has imporved 100%. I don't have the insomnia anymore and I don't sleep 12-14 hours anymore and do wake up feeling rested most of the time. On those days, I too get busy and work on my house and things like that. But now I don't feel as bad if there is a day that my only goal is to make it from the bed to the bathroom and then to the couch! Understanding what I'm dealing with has made a huge difference for me as well.

I am going to be doing a lot of reading regarding homeopathy and natural medicine as well in the near future. Thanks so much for your advice as it meant a lot to me!

Msnova I'm glad I'm not the only one who has concerns with taking narcotics and other meds continually forever. I have come to accept the fact that I will probably always need some sort of Rx help to get through one symptom of another, but I am definitely going to try to learn as much as possible about dealing with the FM in other ways.

I'm going to do some reading on the supplements you suggested and run them by my doctor and I have already gotten a tennis ball. (haven't used it yet, but have it lol)

For right now (at least the next few weeks) my doctor has put a halt on all exercises due to my difficulty in adjusting to my pain meds and side effects. Streching I think would be ok, but i've put an email in to her to double check. Thank you for sharing some of your story and solutions!!! I do appreciate it more than you know! Have a wonderful day!

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Old 04-27-2010, 07:57 PM   #7
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Re: New to Board and Recently Diagnosed with Fibromyalgia

Iam new to this so bear with me. I have been living with FM for 8-9 years, I have taken Neuronton, Lyrica, Savella and am now back with Neurontin and Lortab. The Lyrica worked great, but, I retained fluid real bad. It was to the point of where I sounded like I had asthma, but I didn't. When I was taken off my Dr. put me on Savella. It also worked great, but, I couldn't sleep and I felt wired for days after I stopped it. So, my Dr. put me back on Neurontin with Lortab. I am really trying to limit my use of the lortab. But, I have FM to the point that I can predict the weather. Past few days have been awful. I am to the point I can't work, and I have develloped problems with nerves in my tail bone so I can't sit still. Will it ever end? The meds I spoke of are my findings with me only. Meds treat me different than most. So, good luck to ya'll. I would appreciate some feedback. Thanks bunches........

 
Old 04-28-2010, 10:41 AM   #8
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Re: New to Board and Recently Diagnosed with Fibromyalgia

HI Sixshooter - I too am a weather predictor. I was driving home from a client yesterday afternoon and after 45 mins had to stop the car and sleep for 30 mins even though I only had 30 mins to go - I knew I was too tired. I got home at 6pm and slept till 8 - spark out!! Couldn't work out why as it was a warm day - easy work day etc this morning I woke up to rain!!! It seems to be that the changes in pressure affect me hugely - and the cold/wind is disastrous - and given that I live in the UK is a challenge to say the least!!

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Old 08-03-2010, 10:50 PM   #9
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Re: New to Board and Recently Diagnosed with Fibromyalgia

I am also sorry you have the problems that we all share in one way or another. Physical therapy helps, as does keeping your emotions steady because emotions can play hell with your body.
I understand your need to be free of prescription help, but you are lucky that you found a doctor who will help. I will be very lucky if I haven't done damage to my stomach from taking Advil for so many years for very little effect.
My suggestion is to keep the meds on hand and decide daily if you want to use anything that day. I take Morphine and Soma for mine, but on days that I can get by without taking any I do. Unfortunately There are no days of quite peace but it is always the new things that are the most difficult, after the hurtle of "Oh no, not this now" passes and you figure out a way to deal with whatever the issue at hand is you will have the power of knowing what is going on and fear is a big enemy.
There is a thing called a Thera Cane that can help you do your own trigger point therapy. < edited >
My P.T. gave me one years ago and it has helped a lot.
For me the the times that I feel helpless are the worst and doing something that empowers me in even a small way can help emotionally. If you get one just please be careful. Often I use it to try and pry my ribs apart and can get more into the fight than how hard and how long I am applying the pressure. But used like a smart person it can be helpful.
This is a crazy thing we share, sometimes I think we are a sub species. It can be overwhelming. That is normal. If things do not get accomplished because your body is playing hell with you just try and think along these lines.
Was cleaning the house a life or death situation?
< edited >
Good luck and give yourself a break. It's hard to deal with but you have found some great folks here (I am glad I did!) and lots of info on the net. Information is power.

Last edited by hb-mod; 08-03-2010 at 11:45 PM. Reason: Please do not post unapproved website links. Thanks!

 
Old 08-05-2010, 07:47 PM   #10
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Re: New to Board and Recently Diagnosed with Fibromyalgia

Hi everyone,
Hey I just wanted to apologize for posting the website. I really wanted to get that information out but not in any way that brakes the rules.

 
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