[irishgirl]

I was diagnosed with fibromyalgia about 7 months ago. I've visited several websites, including WebMD, NIH, Cleveland Clinic, Mayo Clinic, Arthritis Foundation. It seems treatment is all trial and error. My main issue is inability to sleep and muscle aches. I've tried Ambien 5mg, which gives about 4-5 hours of sleep; if combined with Xanax I can get 8, but Dr. doesn't seem to like that combination. Lunesta gives about 5 hours sleep (just started trial). Several websites suggest antidepressants - Wellbutrin didn't work, in fact seemed to contribute to depression. I think a decent night's sleep would take care of that issue, since the aches are greatly diminished. Even when very very tired, I still have trouble getting to sleep.
Is Xanax with Ambien or Lunesta a bad combination? is there anything else that might work for 8 hours sleep? thank you.

[Scarlet]

Hi Irish.

Has your doc not thought to increase the ambien??? I take 10-15mg per night and it works. I have FM too, diagnosed almost 4yrs so I know the pain and I know the confusion in the first months/years of coping. I have a wonderful reading list if you are interested please let me know.

As for anti-depressants...it would be very rare for a person to suffer from FM and NOT need an anti-depressant. Cymbalta is a relatively new treatment for depression AND FM pain! I think it is unfortunate but you are correct about trial and error...what works for one person won't be suitable for another. It will be the next couple of generations that benefit from the trial and error approach instead of us I'm afraid but if we can help future generations I think it's worth it. (I have 2 kids and pray they do not get it.)

BEST of luck to you in your treatment. Gentle hugs.
Scarlet

[irishgirl]

Hi Scarlet -
thank you for your response so quickly. I am off Wellbutrin and feeling better and haven't even started Effexor yet. but we have had better weather and I still believe that weather (be it temperature, sunshine and/or barometric pressure) DOES have an effect. Dr. started me on Lunesta but it leaves a VERY BAD aftertaste for the entire day following.
Yes, please, I would be interested in the reading list you mentioned, I think education is best way to go with this. I would also be happy to share things I've received - I will forward to you anything I have that is not on your list if you like (websites, etc.)
Thank you again.

[lgirl]

quote:Originally posted by irishgirl

I was diagnosed with fibromyalgia about 7 months ago. I've visited several websites, including WebMD, NIH, Cleveland Clinic, Mayo Clinic, Arthritis Foundation. It seems treatment is all trial and error. My main issue is inability to sleep and muscle aches. I've tried Ambien 5mg, which gives about 4-5 hours of sleep; if combined with Xanax I can get 8, but Dr. doesn't seem to like that combination. Lunesta gives about 5 hours sleep (just started trial). Several websites suggest antidepressants - Wellbutrin didn't work, in fact seemed to contribute to depression. I think a decent night's sleep would take care of that issue, since the aches are greatly diminished. Even when very very tired, I still have trouble getting to sleep.
Is Xanax with Ambien or Lunesta a bad combination? is there anything else that might work for 8 hours sleep? thank you.

lgirl

[lgirl]

I was diagnosed with FM in 2002 and am still confused by this diagnosis. I have the same problems you are speaking of and have gotten some pain relief from Cymbalta-60mg (for depression). The dr. treating the FM presc's. Suboxone for pain which is much better than before, Providial for wakefulness (not working very well), and Seroquil for sleep(too much groginess). The pain had somewhat lessened for about 4 mos. when I started the Cymbalta, but now the muscle tension has started again. Fatigue is a major problem. My advice to you about a sleep med. agrees with Scarlet-increasing the dose of Ambien. I have taken a larger dose than you're taking and woke with more alertness but cannot afford it and my ins. does not cover it. It's a great sleep med. I take Seroquil 100-150mg and am just starting to have probs. staying asleep. I wake throughout the night every night tense and groggy in the morn. I take 3mg of klonopin per day also and get relief from the tension with that, but not for 24 hours. The doses seem to wear off sooner than 8hrs. FM still seems like a helpless diagnosis to the physicians but I haven't read too much about it lately. Sorry for not focusing on your question more, but definitely Ambien would be my choice. Do either of you have problems with excess groginess and fatigue when you wake and throughout the day. I wake much of the time feeling like 300lbs has crushed my body and it takes a couple of hours to just get moving. My joints feel crushed and twisted and stay sore throughout the day. I never know what tomorrow will be like. I have more bad days than good. I've never talked about it in a chat session until now and am wondering if you and Scarlet have the same symptoms... Maybe I need advice... I've been distraught by this condition and have been too undependable to work after 19yrs as an exec. asst. It has depressed my family, my husband, and I worry about my marriage. Who wants a sick 37yr. old wife? I feel sorry for him. Does anyone feel the way I do? I am completely and utterly ashamed. Maybe someone has advice or shares the same symptoms. Is this the FM you suffer from??[?]

lgirl

[lgirl]

[quote]Originally posted by lgirl
[
messed up - new user tech. difficulty...

lgirl

[irishgirl]

quote:Originally posted by lgirl

I was diagnosed with FM in 2002 and am still confused by this diagnosis. I have the same problems you are speaking of and have gotten some pain relief from Cymbalta-60mg (for depression). The dr. treating the FM presc's. Suboxone for pain which is much better than before, Providial for wakefulness (not working very well), and Seroquil for sleep(too much groginess). The pain had somewhat lessened for about 4 mos. when I started the Cymbalta, but now the muscle tension has started again. Fatigue is a major problem. My advice to you about a sleep med. agrees with Scarlet-increasing the dose of Ambien. I have taken a larger dose than you're taking and woke with more alertness but cannot afford it and my ins. does not cover it. It's a great sleep med. I take Seroquil 100-150mg and am just starting to have probs. staying asleep. I wake throughout the night every night tense and groggy in the morn. I take 3mg of klonopin per day also and get relief from the tension with that, but not for 24 hours. The doses seem to wear off sooner than 8hrs. FM still seems like a helpless diagnosis to the physicians but I haven't read too much about it lately. Sorry for not focusing on your question more, but definitely Ambien would be my choice. Do either of you have problems with excess groginess and fatigue when you wake and throughout the day. I wake much of the time feeling like 300lbs has crushed my body and it takes a couple of hours to just get moving. My joints feel crushed and twisted and stay sore throughout the day. I never know what tomorrow will be like. I have more bad days than good. I've never talked about it in a chat session until now and am wondering if you and Scarlet have the same symptoms... Maybe I need advice... I've been distraught by this condition and have been too undependable to work after 19yrs as an exec. asst. It has depressed my family, my husband, and I worry about my marriage. Who wants a sick 37yr. old wife? I feel sorry for him. Does anyone feel the way I do? I am completely and utterly ashamed. Maybe someone has advice or shares the same symptoms. Is this the FM you suffer from??[?]

lgirl

[irishgirl]

hi Lgirl -
sorry - I'm having technical difficulties too.
it is NOTHING to be ashamed of!! so stop that thinking. I have had "friends" who said outright or implied that it's all in my head which just shows their ignorance and insensitivity. Don't go there or let others take you there.
I'll include a list of websites I've visited, some for syndrome info, some for medication info:
drugs.com, to check side effects and info on meds prescribed.
Arthritis Foundation for info, treatment suggestions, gives info on nearby places for aquatic therapy, support groups, etc.
Mayoclinic.com; cleveland clinic.com; webmd, NIH.gov.

whirlpool tub late evening does help sleep. I also have a glass of wine in the evenings and it (as indicated with most meds) does seem to increase effect of medications for sleep.
Has your dr. prescribed Flexeril? (muscle relaxant)

http://www.realage.com/research_libr...bromya_crs.htm

http://www.nlm.nih.gov/medlineplus/fibromyalgia.html

http://www.nlm.nih.gov/medlineplus/e...cle/000427.htm

http://health.nih.gov/result.asp/260

http://www.niams.nih.gov/hi/topics/f...ia/fibrofs.htm

http://www.niams.nih.gov/ne/highligh.../fibro_sum.htm

http://www.nlm.nih.gov/medlineplus/e...pages/9758.htm

http://nccam.nih.gov/clinicaltrials/fibromyalgia.htm

http://health.nih.gov/result.asp/260/2

http://www.ninds.nih.gov/find_people...s/volorg71.htm

http://www.gethealthyagain.com/autoimmune.html

These were links given to me by various people who also suffer.

Regular therapeutic massage helps - drink LOTS of water to flush lactic acid released by massage); I am looking into biofeedback.
there are facilities that specialize in pain management; accupuncture has also been recommended. Also do things to make yourself laugh, sitcoms, funny movies; try yoga, gentle stretching, breathing exercises and stress management exercises. I have been wandering through Dr. Andrew Weil's website, he advocates natural therapies.

with ambien and lunesta I have not had grogginess issues, but also spend first 10-15 minutes moving gently in bed and doing slow stretches - then more stretching in the shower after muscles are warmed up.
My rheumatologist wants me to try anodyne therapy (infrared light therapy) but not every physical therapy location has it - and to buy your own is at least $1000.00, (Google "anodyne therapy for fibromyalgia") but when I'm feeling awful and think of other $$ spent it seems like it might be worthwhile.
Scarlet and I agree that treatment is very much trial and error, so don't give up and we can share info, results and suggestions, but keep in mind different things work better for different people. I also think that when we get upset and frustrated it is a downward spiral, not easy to get out of but keep a list of things that help you relax.
OH - I got a "white noise" sleep machine by Homedics at Target, about $12.00, can play wave sounds, brook, rain, etc., which also helps. Every little bit....
Smile and be good to yourself.
Irishgirl

[lgirl]

quote:Originally posted by irishgirl

hi Lgirl -
sorry - I'm having technical difficulties too.
it is NOTHING to be ashamed of!! so stop that thinking. I have had "friends" who said outright or implied that it's all in my head which just shows their ignorance and insensitivity. Don't go there or let others take you there.
I'll include a list of websites I've visited, some for syndrome info, some for medication info:
drugs.com, to check side effects and info on meds prescribed.
Arthritis Foundation for info, treatment suggestions, gives info on nearby places for aquatic therapy, support groups, etc.
Mayoclinic.com; cleveland clinic.com; webmd, NIH.gov.

whirlpool tub late evening does help sleep. I also have a glass of wine in the evenings and it (as indicated with most meds) does seem to increase effect of medications for sleep.
Has your dr. prescribed Flexeril? (muscle relaxant)

http://www.realage.com/research_libr...bromya_crs.htm

http://www.nlm.nih.gov/medlineplus/fibromyalgia.html

http://www.nlm.nih.gov/medlineplus/e...cle/000427.htm

http://health.nih.gov/result.asp/260

http://www.niams.nih.gov/hi/topics/f...ia/fibrofs.htm

http://www.niams.nih.gov/ne/highligh.../fibro_sum.htm

http://www.nlm.nih.gov/medlineplus/e...pages/9758.htm

http://nccam.nih.gov/clinicaltrials/fibromyalgia.htm

http://health.nih.gov/result.asp/260/2

http://www.ninds.nih.gov/find_people...s/volorg71.htm

http://www.gethealthyagain.com/autoimmune.html

These were links given to me by various people who also suffer.

Regular therapeutic massage helps - drink LOTS of water to flush lactic acid released by massage); I am looking into biofeedback.
there are facilities that specialize in pain management; accupuncture has also been recommended. Also do things to make yourself laugh, sitcoms, funny movies; try yoga, gentle stretching, breathing exercises and stress management exercises. I have been wandering through Dr. Andrew Weil's website, he advocates natural therapies.

with ambien and lunesta I have not had grogginess issues, but also spend first 10-15 minutes moving gently in bed and doing slow stretches - then more stretching in the shower after muscles are warmed up.
My rheumatologist wants me to try anodyne therapy (infrared light therapy) but not every physical therapy location has it - and to buy your own is at least $1000.00, (Google "anodyne therapy for fibromyalgia") but when I'm feeling awful and think of other $$ spent it seems like it might be worthwhile.
Scarlet and I agree that treatment is very much trial and error, so don't give up and we can share info, results and suggestions, but keep in mind different things work better for different people. I also think that when we get upset and frustrated it is a downward spiral, not easy to get out of but keep a list of things that help you relax.
OH - I got a "white noise" sleep machine by Homedics at Target, about $12.00, can play wave sounds, brook, rain, etc., which also helps. Every little bit....
Smile and be good to yourself.
Irishgirl

lgirl

[lgirl]

Hi Irishgirl,

You're a real doll to respond so quick and the info. you gave me is so plentiful. I will check it all out. I've also been reading about people who are having problems with Suboxone (Buprenophrene) withdrawal which is spooky since I don't know how long my dr. will prescribe for FM pain. Feels like living on pins and needles. I will ask my dr. about the other sleep med. you mentioned and research the sites too before talking to him. THANK YOU SO MUCH!! I'm sure I will talk to you again as I will check this site frequently.

lgirl[^]

lgirl

[lgirl]

quote:Originally posted by lgirl

lgirl

lgirl

[Irish Eyes]

Irish- I have had FM,with myofascial, for 7 years.My Dr. (the Dr., that knew what he was doing)He put me on Paxil CR, which now is, Paroxetine,25 mg., 4 X per day. He also put me on Remeron to sleep.It works within 15 minutes! He switches off, and on, on the sleeping meds. The other is Trazodone,2,50 mg., at night.Neither one make me groggy, or sluggish, in the morning! I was rested, and raring to go! He put me on Norco, for the pain. It's the best pain medicine I have ever been on! Then, instead of weak muscle relaxers, he put me on Soma. I take 1 mg., of Klonopin, 3X per day. It is a winning combination! FINALLY! It may not be the right combo., for everyone, but, 7 yrs., later, a Doctor gave me a great,and helpful cocktail, for my FM ! Good luck, Irish Eyes

[lgirl]

Hi Irishgirl and Irish Eyes,
My doctor is afraid to change from Cymbalta to another anti-depressant because Cymbalta has pain med. in it and the pain is not better than before unless the weather changes (as you were talking about). Rain and humidity make it so much worse and the pitting and swelling in my legs, feet, and hands are horrible right now. Do you have swelling?
The depression has stayed the same for years. I was working in 2002 (when it started)and the FM was mostly myofacial. Now it is in my chest, legs and hips also.
I've been taking Seroquel for sleep and it makes me groggy. I will ask the dr. to change to Lunesta or Remeron. Seroquil might be good for you for sleep, Irishgirl. I take 100mg, but am groggy the next day. It probably works different for everyone, but you should get a full 8 hrs. of sleep.
How old are you two? Have you ever applied for disability? I have had physical accidents which injured my jaws and neck and have been through years female surgeries, psychiatry for depression, anxiety, and they said Bipolar disease, but now say BPD, if you know what that is. It's so humiliating.
My energy level is the pits most of the time but I do get an occasional burst of energy. The day after is H_ _ _ if I over-do it. Do you have those same problems? I can not keep my eyes open sometimes from the fatigue, knowing I have a dr. appt. or something I have to do an hour later. It feels like torture and there is no medicine to help that. I don't know of anything for it anyway. One dr. tried to give me steroids. They did not work.
I am so curious to know if anyone has the same probs. I do. I even have stomach probs.. I've had my gallbladder removed and bile is leaking into my stomach from my kidneys. My ears ring and the left one started buzzing about a month ago. I had a hearing test and the dr. said I had sensorineural hearing loss and tinnitis. The hearing loss is mild now and I hope it doesn't progress, but I think the tinnitis (buzzing,ringing) will continue since it gets worse with the myofacial pain and pressure from humidity.
I don't know what each day will bring and I am not dependable anymore; for anyone. I decided to try to get SOC disability a year after quitting work and am at the trial level. I've been denied twice and I fear I will not receive it and need it so badly. I've worked hard for 22 years and the company I last worked for asked me if I would consider disability when everything started crashing down. I was so proud then, I said of course NOT! I was so stupid. I had no idea what I was in for and finally quit due to stress under duress from illness and harassment. My "direct report" male VP became harrassing after I had to make numerous appts. with dr's. and schedule physical therapy. I tried to make up all time missed and fought to keep up. I really thought I could get rid of "it" and things would be fine again. That was only the beginning. I didn't ask for this ******************** and am dealing with it as best as I can, but I am not able to work living on this roller-coaster. My husband was let go from his job during a company takeover in March. We live with my mother-in-law who I love dearly, but money is so tight and the stress he's under is incredible. This has burdened our relationship terribly and I feel helpless. I know I'm skipping around here... I want to help you guys too if I can. The meds I take are Cymbalta 60mg/day, klonopin 3mg/day, Premarin (progesterone? from hysterectomy), Carafate, 1 hour before I can eat along with Reglan-15 mins. in addition before I eat. I've lost 48lbs. in 3 years from these stomach probs. I'm at the hearing level and all of my dr.'s are participating with the disability case, but I will be forced to work if I don't get it and I know I will loose job after job. I have too many things to talk about and have been through so many doctors, medications, physical therapy, pain mgmt., and you name it. I hope I could help you if I've already been through something you have.
What MG of Remeron are you on???
It seems like we are the only FM patients participating. I have to get ready for the dr. appt. I will ask him about Remeron. I've taken Trazadone before, but could only get 2-4 hrs. of sleep on it. I feel so transparent now. Atleast I'm anonimous... Hope I haven't bored you guys..

Take care!

lgirl

[irishgirl]

HI -
also look at Arthritis Foundation - they have many links and suggestions, local sources, places for aquatic therapy, biofeedback, pain management.
have been looking into naturopathic remedies at local health food store.
Has anyone been tested or considered "toxic metal poisoning" - i.e. too much mercury, etc..? not sure how to get tested but that was suggested.

[Scarlet]

I'm so sorry I just sort of left you guys in a lurch! I have LOTs to say about CYMBALTA since I did see it mentioned. (This is why I've been gone)

Ughhh....about the time I started writing here I was also going through a severe depressive episode and ended up in the hospital. If you are taking Cymbalta for pain/depression whatever you do don't stop taking it suddenly!!! Bad, very bad. A nurse told me my doc said to start prozac 20mg and stop Cymbalta when in fact she said ADD 20mg prozac back into what I was taking. I can vouch for Cymbalta's pain relieving qualities for fibro! I know that it won't work for everyone but it is helping me a lot more than I thought. I
won't get too detailed but I went from 60mg to 0mg and lost it completely (Keep in mind I was depressive before I was ever diagnosed with FM, CFIDS and MFP-it [depression] was well controlled with medication) I also felt I needed to stop my pain killers about a week later so I actually added insult to injury for myself.

Cymbalta, if stopped suddenly will give you tremmors, electric shock sensation thru your body, a very quick decline. If you are taking it do not listen to ANYONE that sys it is okay to stop suddenly. I'm now back on 30mg plus 40mg prozac. While on 60mg I noticed side effects were worse, sweating and such and it didn't help any better so we are keeping it at 30mg-I've also done a little research and found that 30mg works well but many people didn't notice any difference when it was increased so it would seem I wasn't the only one. My pain increased with a vengance and the tension thruout my body was tremendous-truly a horrifying experience.

Whomever said "Who wants a 37yr old like me for a wife"-BUCK UP little camper, I'm 36. I know that horrible feeling I have 2 small kids too and often I think they would all be better off you know? We have something that many people think of as "In your head" but all I can say is screw them! Evidence is mouting and public ignorance will not last forever.

Lots of great information has been added to this thread but I can't say enough for just UNDERSTANDING. It's been a very long road to get me where I am right now but I would not be here without the internet. I frequent several mssg boards and have found a lot of support out here in cyberspace.

If you have a HOBBY then find a message board where you can talk about something you like which doesn't include fibromyalgia. Most of this disease is making it through one day at a time. It's so hard not to plan for the future or think weeks in advance but its something I think would help all fibro sufferers. Take it easy, do what you can and don't lament all the things you can't do.

I've read this thread with great interest and many posts sound like I wrote them myself-I've had all the same feelings and positive thinking is just silly sometimes when you can't get out of bed or even eat because you can't prepare anything and you feel too bad to ask someone else to do it for you.

I wish pain free days for everyone.

Scarlet

[bkdaniels]

Hey irishgirl, how are you doing?

The overall approach for chronic pain in FM involves a multifaceted treatment plan that incorporates various adjuvant medicines, aerobic exercise, and psychologic and behavioral approaches to reduce distress and promote self-efficacy and self-management (eg, relaxation training, activity pacing, visual imagery, distraction). Usually the condition clears clears up in a couple of days, and local heat and massage are found to give comfort while symptoms are present.

Fibromyositis and myogelosis would appear by defination to represent an inflammation of the fibrous tissue of the muscles, fascia, aponeuroses, and probably nerves as well. In Europe, following the discriptions by Lange and Schad'e in 1921, the term myogelosis was applied to this condition, but it has never gained popularity in the United States.

The condition is a "favorite" with physiotherapists and osteopaths, who believe their maneuvers and adjustments to be helpful, as indeed they may. The current epidemic of FM, chronic fatigue syndrome, sick building syndrome, and multiple chemical sensitivity syndrome arguably is, at least in part, due to media hype, fear, suggestibility, and focus on definable causes by patients and physicians.

The benefits of exercise for patients with FM include improvement in subjective and objective measures of pain and in an overall sense of well-being. Because many patients with chronic pain fear that activity will make their pain and fatigue worse, they become deconditioned.

Graded aerobic exercise (eg, low-impact aerobics, walking, water aerobics, stationary bicycle) should start very gently and progress gradually to endurance and strength training. Encouragement and positive reinforcement can improve compliance.

Obesity, poor posture, and overloading activities at work and home should be addressed. Diffuse and regional pain is improved by strategies such as sauna, hot baths and showers, hot mud, and massage.

Pharmacologic and nonpharmacologic management of poor sleep is crucial for improving the patient's overall sense of well-being. Only clinical facts are at hand: a muscle or group of muscles becomes painful and tender after exposure to cold, dampness, or minor trauma, or for no reason that can be discerned.

Agents of varying durations of action are used frequently for anxiety and panic and as sleep aids (poor sleep is nearly universal in FM). These agents also have antinociceptive effects in patients with chronic pain.

Benzodiazepines (eg, alprazolam (Xanax), lorazepam (Ativan), clonazepam (Klonopin)), buspirone (BuSpar), trazodone (Desyrel), zolpidem (Ambien), and others in the anticholinergic and antihistaminergic classes are useful. With respect to treatment of insomnia, do not forget to suggest optimum sleep hygiene.

Excellent educational resources are the Arthritis Foundation, various FM advocacy groups, and certain Internet sites, such as that of the Friends International Support. Effort should be made by the patient to foster self-efficacy, with diminishing dependence on health care providers.

REFERENCES
School of Pharmacy University of North Carolina at Chapel Hill
Booth Publications: Divison of Medicinal Chemistry And Natural Products
Williams & Wilkins, 1961
--- et al: Neuromuscular Disorders
Neuromuscular Disorders

Best wishes,


"Experience is the best teacher, but has the toughest Grades module"
Byron K. Daniels, PBT

[Mom O Rama]

[^]

Irish Girl,

What a lovely, on-topic, accurate and informative post from Byron. I've been an FM/CFIDS patient for 5 years now.

Byron's information was excellent. I could add that you must find a doctor who believes in the diagnosis and is imaginative and positive about treatments and therapies (no quackery).

I would recommend finding a rheumatologist who specializes in the treatment of FM/CFS. It may also be helpful to see a therapist who specializes in coping mechanisms for people like you & me[:I]

My favorite website, chock full of info, and not full of "buy this product and slap your forehead and YOU WILL BE CURED" hogwash...

www.fibrohugs.com.
the other that I like is www.immunesupport.com

Great author to check out is Devin Starlanyl...self-advocacy for FM and CF.

There are also support groups available in your community, you just have to do a little research. Check with a local hospital, or holistic health practitioner, massage therapy clinic.

You will feel better! It will not always be this way! You have a REAL condition and are not lazy, crazy or mental!

Prayers to you, my sister.

Signing off,
(maiden name McGee)

~ your sister in hope, light and peace

[buttercup1016]

I ENJOYED YOUR POSTS HAS EVERYONE STOPPED?[?]

BUTTERCUP

[irishgirl]

Hi Buttercup and all -
I think we all go through phases, posting when something comes up or we have things to share.
I have recently (last 2 months) been dealing with IBS, which I understand is common with Fibro. Internist did blood and stool tests, gave me Flagyl, which seemed to help for a week, now seems getting worse again and I haven't finished the rx. Started muscle spasm in July, physical therapy helps THAT DAY but pain and tight muscles are back next day - still doing PT but stopped pain meds and muscle relaxers because of upset stomach. sitting all day at work doesn't help, but I need to support myself.
Has anyone tried biofeedback or hypnosis?
Any suggestions re diet?
thanks,
Irishgirl[/font=Arial]

[elsiejay]

I was diagnosed with FM about 8 years ago and it doesn't get any better. Like you folks, I have tried a multitude of drugs, therapies, vitamins and prayers. I have had IBS, fatigue, muscle pain that is unbelievable, more fatigue and all the rest.

Here are my suggestions. First of all, find a single doctor who believes in you and in fibro. Have all prescriptions, specialists, tests, and reports go through that one source. I have been to all the specialists possible, and it is impossible to keep track of who did what when. Now I let the doc's office handle it. they are better at record keeping than I am.

Then make sure you are using one pharmacy. Get to know the pharmacists and make them part of the family. They will be understanding of the many changes, additions, subtractions and frustrations, and will be able to serve you better than several different pharmacies can.

I had to learn to really listen and trust my body. We aren't very good at that, but we can learn. When my body says it is time to stop, I had to learn to stop. When it is time to go, I sometimes have to push because I am always so tired, but I am learning to push.

Who knows about food. Again, listen to your body.

I did find a wonderful resource on the Weather channel that explains why our bodies react to changes in weather. http://www.weather.com/outlook/healt...eather/tenday/
It has helped me, although it isn't the solution.

I also have a small hot tub that has been a God-send. I keep it at about 103 (which is hot, but my body loves it) and crawl in as needed. The heat and bouyancy make a huge difference. I have a stretching regimen that I use to keep everything moving, and am 100% convinced it has helped. I have fallen several times without so much as a sprain, although I should have broken my arms, wrists, neck at least once.

I have a strong support system who believes I'm telling the truth. No one looks at us and says we look sick. And we have to get past that stigma on our own. But people who love you will believe you and help you. Find someone else who has fibro and understands, and use each other as a resource.

And ignore all the fads out there. Calcium coral may solve the world's problems, but it is only going to take your money. Vitamin supplements may make you feel better, but aren't going to fix fibro. There are a million cons for every one of us who hurts, and they don't care if you get better, only that you send them your credit card number.

and learn to laugh at yourself. God bless you. I wish I had a solution.

Lcj

[luddite1965]

Hello all.
I just joined and am grateful for your thread.

I have CFS/FM for eighteen years, on disability for it, and am eager to learn from other patients, because i don't feel like i've learned enough yet.

To the post describing shame, I always tell doctors that my worst symptom is shame, because no one knows why i can't keep a job, keep a girlfriend, do what everyone does, etc.

Anyway, I am inspired by all your efforts to keep running your own experiments with meds to find things that work.

I have good docs and family support...i just sometimes get pessimistic.

Good luck to you all,
thanks again,

George

[DrHadjian]

Hi! I'm fairly new to this board. I am a 38 year old female. I was diagnosed with FM almost two years ago. My symptoms started in 2001, shortly after I got married.

Something you wrote about the "swelling" of the legs, feet and hands floored me. I have been to the hospital numerous times between 2003 and now due to severe swelling of the legs and feet. The swelling has gotten so bad that I was not able to walk. My hands would swell up so bad that I couldn't make a fist. The DRs at the hospital could never figure out what was causing the swelling. My quewstion is this, is the swelling associated with or one of the MANY symptoms of FM?

My depression has stayed about the same too. I am being treated for depression & anxiety. I, too, was working in 2001 (at the Post Office) when the first severe pain flare-up hit me. I was in an extremely stressfull living situation at the time I experienced my first pain flare-up in 2001. There had been many times I had prayed to die. The pain has been unbelievable.

I have chest pains, and severe pain running from my low back, hips down through both legs and feet.

Reading what you wrote was like reading something I could have written myself. I have applied for disability 2 years ago. I have had several accidents and had been assaulted a few times. At age 30 I was diagnosed with multiple level Degenerative Disc Disease. The Orthopedic Surgeon said I had the back of a man in his 70's.

Your statement here ("My energy level is the pits most of the time but I do get an occasional burst of energy. The day after is H_ _ _ if I over-do it.") is so typical of everyone I have talked with that suffers with FM.

The pain & other symptoms of FM have made feel totally helpless, useless, etc. After having been supporting myself since I was a teen, not being able to work has litterally driven me crazy. I am not able to support myself or my stepchildren. My estranged spouse abandoned me & his children and has shacked up with some female he met on AOHell. In the 3 years we've been seperated, he has done very little in way of supporting his children. In the last year he has done nothing to support or help with his children. (I was finally able to get a child support order this month.)

I have been through too many doctors, medications, physical therapy, pain mgmt., etc. myself. From what I understand, sad but true, this is very typical of all FM patients. I could not possibly list all of the meds I have been prescribed. My problem is, if they don't work for me, I immediately stop taking them, thus I have a surplus of meds and don't know what to do with them. I don't want to have to take medications that I feel don't work for fear of liver damage, or some other important body part/organ.

All we can do is keep trying till we find something that works, right? Keep the faith.

Thanks,

Bren

[hensleyhill]

Hello, This is my first time ever doing anything like this. Your descriptions of your illness touched many nerves with me. I thought I was the only one who felt this way until I read your post. It may not be the appropriate thing to say but, Thanks. It is nice to know I am not alone!

I take AmbienCR for my sleep disorder. It is wonderful. I understand your insurance dilemma.It is very expensive to get a good nights rest.I also take a mineral called Melatonin. You get it at the Drugstore. It is a sleep enhancer. It does seem to help. I take it at night with my Cymbalta 60mg, 12 mg Melatonin and 12.5 mg AmbienCR. I get 8 hours of sleep. I am only 39 and I feel just like you. I have anxiety attacks and fear my husband is gonna leave me.Who wants to take care of a sick person all the time? My fibromyalgia was diagnosed about 3 months ago but, have had it most of my life and did not know it. Hey maybe we can communicate back and forth for support. I could use it.

Hensleyhill





[quote]quote:Originally posted by lgirl

Originally posted by lgirl
[
messed up - new user tech. difficulty...

lgirl

[debbie724]

henslyhill, I sure hope someone whom can share in your pain will see your post. Notice the last time someone posted in here... before you... was in Nov. 05. Maybe you should start a new discussion board. I don't have FM... so I cannot sympathise... but I care.


debbie

[irishgirl]

hensleyhill and others - I am still wading through the FMS maze. right now am on Xanax .25 as needed, I take it at night so I can get to sleep (heart pounding, mind racing)- sometimes during the day when frustration and anxiety are too high; Xanax with Ambien gives me 6-7 hours sleep. Dr. just prescribed Ambien CR yesterday - am looking forward to even slightly better results. I use whirlpool bathtub (fits in regular tub opening) and it really helps. Massage therapy helps. Even when you don't feel like it, do SOMETHING. walk - it really helps legs - make sure you have good shoes good arch support; even folding laundry helps keep upper body moving, pool therapy is good - most YMCA's have Arthritis Foundation pool program. Yoga and gentle stretching is helpful. I use Skelaxin (muscle relaxant) when needed during the day, Flexeril in evenings or weekends (more drowsy effect).
I went through 4 months of tests and just got dx of Irritable Bowel syndrome (IBS) and have Googled IBS diet - high vegetable fiber and mostly vegetable protein. your system needs some fat to keep gallbladder and liver interactions right, stay away from fried foods, check yourself for lactose intolerance. I have tried prescription medications for IBS but am finding that following IBS diet and using OTC probiotics is more helpful and not the side effects of prescriptions. Stop toxic relationships, adjust your lifestyle to allow relax time but don't give up on gentle exercise and activity. Surround yourself with positive things and people, watch comedies.
CHECK OUT: fibrohugs.com; nih.gov; fmaware.org; National Arthritis Foundation; gethealthyagain.com/autoimmune; fms friends international; aarda.org;
check this site and board because we're not alone.. hope some of this helps.

[hensleyhill]

Irishgirl, Tell me more about this fiber diet. I have the same problem.I don't like taking these suppositories. I eat raisen bran everyday. Drink prune juice. Applesauce helps sometimes.

I think You will like the Ambien Cr. Let me know how it works for you!

I currently take pool therapy. I enjoy it. If it is raining the day of my appointment like today. I am not leaving the sheets.

Hey, I gotta question. You don't have to answer if you don't feel comfortable. You said during the day, you have anxiety and frustation. Do you know what your frustrated about or does it just happen out of the blue. I have the same disorder. I personally don't know why I am frustrated. I shake uncontrollably and feel anxious but, I don't know why. Is this part of fibromyalgia?

[xx(]

quote:Originally posted by irishgirl

hensleyhill and others - I am still wading through the FMS maze. right now am on Xanax .25 as needed, I take it at night so I can get to sleep (heart pounding, mind racing)- sometimes during the day when frustration and anxiety are too high; Xanax with Ambien gives me 6-7 hours sleep. Dr. just prescribed Ambien CR yesterday - am looking forward to even slightly better results. I use whirlpool bathtub (fits in regular tub opening) and it really helps. Massage therapy helps. Even when you don't feel like it, do SOMETHING. walk - it really helps legs - make sure you have good shoes good arch support; even folding laundry helps keep upper body moving, pool therapy is good - most YMCA's have Arthritis Foundation pool program. Yoga and gentle stretching is helpful. I use Skelaxin (muscle relaxant) when needed during the day, Flexeril in evenings or weekends (more drowsy effect).
I went through 4 months of tests and just got dx of Irritable Bowel syndrome (IBS) and have Googled IBS diet - high vegetable fiber and mostly vegetable protein. your system needs some fat to keep gallbladder and liver interactions right, stay away from fried foods, check yourself for lactose intolerance. I have tried prescription medications for IBS but am finding that following IBS diet and using OTC probiotics is more helpful and not the side effects of prescriptions. Stop toxic relationships, adjust your lifestyle to allow relax time but don't give up on gentle exercise and activity. Surround yourself with positive things and people, watch comedies.
CHECK OUT: fibrohugs.com; nih.gov; fmaware.org; National Arthritis Foundation; gethealthyagain.com/autoimmune; fms friends international; aarda.org;
check this site and board because we're not alone.. hope some of this helps.