Fibromyalgia

Traveler · Mar 6, 2005

autumneve- It sounds like you have been going through a lot of pain for many different reasons. I can empathize with you since I have had a long bout of chronic pain myself, have been put on many meds and tried lots of treatments for my problem. I take Cymbalta (for nerve pain and the depression that goes along with the pain) and have been getting nerve blocks which help some. Lately my interventional anesth. sent me to a physical therapist (my nerve entrapment is in my lower abdomen from 3 surgeries). She is almost two hours away from my home, but I thought I would give it a try for one session. She specializes in womens health especially the abdomen and pelvic regions. She has been giving me exercises to do and has been doing myofascial release work on me. She explains this as the white fibrous material that covers muscles, organs, etc. When it is traumatized it becomes twisted and pulled and can cause pain. She thinks it's a possibility that the nerves may be trapped in this mess. I am scheduled to have another nerve block done next week but may put it on hold. It has not worn off like the last ones have and I think her work has something to do with it. It sure it better to go this route than surgery which my family doctor wanted. I haven't had to take my Avinza since I saw her and she did this- first time this has happened in months. I still take the Cymbalta. The s/e is that it makes me tired. When I was first rx'd Cymbalta I was to take 30 mg for one week and then up to 60. I never made it past the 30 because I was so tired I literally didn't move off of the couch for 2 days. She lowered me down to 20 but I dump half of the capsules out and take 10. I wish you luck. I know how pain can impact on every aspect of your life. Remember to look for all of the options and don't be afraid to recommend things to your doctor.

Ann

autumneve · Mar 6, 2005

Hi Ann, Thank you for your kind response.It sounds like you may have hit upon a really good treatment for you.I hope it continues to help you.I have heard of others who have the myofascial treatments.My friend has myofacial syndrome from an auto accident and has been disabled for years but she gets the treatments and it does seem to help her.I think everyone who has this terrible foe should go for anything that can be safely done to get relief.

I am gong to my doctors tommorow and am going to ask for Cymbalta.I am on Lexapro now(I've been on evey antidepressant since 1979) and have been having a lot of pain especially in the abdomen which I am sure came from the recent kidney surgery.

I have been on medical leave since last August for one thing after the other and I dearly wish to go back to work.Not only do I love it but I need to build up my retirement so I can retire in about 9 more years.

I think exercise is the best thing you can do for fibro but sometimes it's not always convenient.I can't walk on my treadmill yet because of my leg surgery but I hope he will release me tommorow to do that and to go back to work.Do you work outside of your home?

Does the Cymbalta really help your pain?I already take Neurontin for my peripheral neuropathy(My fibro was caused by a bad fall and resulted in the neuropathy from damaged nerves) and don't need it for that.I have been on the same medical therapy for 8 years and with the exception of antidepressants have never changed.I take Ultram three times a day and zanaflex at bedtime so I can go to sleep.I have always been a very poor sleeper.I also take Elavil.I have never had any unfavorable side effects from any medications and I count my blessings for that.

I hope to get back into a regular routine and can get back to work.It affords me alot of activity.

Thank You again Ann and I hope you have a great week,Jean

autumneve- It sounds like you have been going through a lot of pain for many different reasons. I can empathize with you since I have had a long bout of chronic pain myself, have been put on many meds and tried lots of treatments for my problem. I take Cymbalta (for nerve pain and the depression that goes along with the pain) and have been getting nerve blocks which help some. Lately my interventional anesth. sent me to a physical therapist (my nerve entrapment is in my lower abdomen from 3 surgeries). She is almost two hours away from my home, but I thought I would give it a try for one session. She specializes in womens health especially the abdomen and pelvic regions. She has been giving me exercises to do and has been doing myofascial release work on me. She explains this as the white fibrous material that covers muscles, organs, etc. When it is traumatized it becomes twisted and pulled and can cause pain. She thinks it's a possibility that the nerves may be trapped in this mess. I am scheduled to have another nerve block done next week but may put it on hold. It has not worn off like the last ones have and I think her work has something to do with it. It sure it better to go this route than surgery which my family doctor wanted. I haven't had to take my Avinza since I saw her and she did this- first time this has happened in months. I still take the Cymbalta. The s/e is that it makes me tired. When I was first rx'd Cymbalta I was to take 30 mg for one week and then up to 60. I never made it past the 30 because I was so tired I literally didn't move off of the couch for 2 days. She lowered me down to 20 but I dump half of the capsules out and take 10. I wish you luck. I know how pain can impact on every aspect of your life. Remember to look for all of the options and don't be afraid to recommend things to your doctor.
Ann

Traveler · Mar 7, 2005

Jean,

You sure have been through a lot! I don't know if the Cymbalta helps or not- it is supposed to potentiate the other meds. Also, it's a dual action antidepressant and is supposed to help with neurological pain (like Effexor but supposedly better.) When my MD first rx'd it, it was being used off label for this. I think it has now been "approved" for neurological conditions. The only drawback is that it's very expensive. Of course depression goes hand in hand with chronic pain, so that's a plus. I agree with you- we need to try anything and be grateful for whatever works. I do work- as an RN in home health 2 or 3 days a week. It is enough for me since I am also in school online working toward my BSN. We live in a very remote area so 6 or 700 miles/ week driving is the norm for me for work, running the kids around, etc. These are very hard miles on mountain roads, so that doesn't help with the pain. In home health we have been using Anodyne therapy for about a year. It is a machine that used infrared light for things like diabetic neuropathy and wound healing. Medicare actually even pays for patients with dm to have their own machine. I tried this on my pain last year but it seemed to exacerbate it. I have seen the Anodyne work well with many of my patients though. I hope you find help and will be able to return to work soon. I know that going to work (even on days when I feel bad) helps my mood tremendously. It kind of puts it into perspective too- no matter how badly I think I have it, there are many others who have many more problems than me. When I see the grace and bravery that they have, it makes me feel ashamed for feeling sorry for myself. Take care of youself!

Ann

FutureNrse · Mar 12, 2005

For those of you who know me well, you know that Fibromyalgia is one of the main reasons I went into pain management. After seeing my mother suffer with the disease for many years, I became all to aware how under treated the disease was and then began to see how under treated ALL pain was.
Hopefully this thread will allow us to expand on the history, presentation and proper treatment of the disease.
To start things off, here is a study that I found which I found to be very helpful.
Pain Ratings in Fibromyaliga...0-10 isn't enough!
Dave
A NOTE about this thread.
ABSOLUTELY NO negativity! If your goal is to come in and debate whether FMS is real disease, if these patients are in pain, the use of narcotics... Hit the road. This isn't your place. This thread is about how to HELP those with FMS. Not give them any more crud then they've already endured.

After all I've been through with herniated disks, and no one believing that I was in agony, I would never knowingly discount anothers pain. I feel guilty though, because unknowingly, I had some very negative thoughts about Fibromyalgia. I know very little about it, but it seemed to me that it appeared in the news overnight and suddenly EVERYONE had it. I had a physicians assistant tell me that it was basically made up, a catch-all for people in pain for no reason. I'm ashamed to say that I believed him. Since then, I've learned more about it and I know now that it is very real, and very painful.

I wish there was a way to stop the negative press about this disease. It will never be taken seriously until people understand how real it is. It's one of those unfortunate things with no middle ground, either a doctor goes overboard and tells every patient he can't take the time to diagnose properly that they have it, or the doctor refuses to believe it exsists and ignores the patients with obvious signs of it.

I hope more research is done and released soon, so the poor people suffering with it will be recognized as having a legitimate condition. Thanks Dave, for starting a thread to get the word out.

Traveler · Mar 13, 2005

I think it would help if every practitioner that is treating patients had experienced some of the same pain the patients present with. We have a very old lady in hh who used to be very active. Her knees started giving her trouble years ago but her doctor didn't think she was a good candidate for replacement. Now she has to splint them to walk or they slip out of joint. They are also very painful which he just brushes off and won't treat. I think he needs one day in her knees to know what her life is like. Empathy is not found in many hcp's. You have to believe what the patient tells you. Other telling signs about pain are: how do you sleep, where do you sleep, what gets you to sleep, do you tell your family about your pain, has your pain caused problems in your family, are there things you would like to do but can't because of the pain? Just because the patient doesn't present in screaming agony, normal vitals, and has a smile on their face does not mean they are lying about their pain. People with chronic pain present much differently than acute pain. Where the difference can be seen is in their mental state and lifestyle changes because of the pain.

Carissa · Mar 13, 2005

Other telling signs about pain are: how do you sleep, where do you sleep, what gets you to sleep, do you tell your family about your pain, has your pain caused problems in your family, are there things you would like to do but can't because of the pain? Just because the patient doesn't present in screaming agony, normal vitals, and has a smile on their face does not mean they are lying about their pain. People with chronic pain present much differently than acute pain. Where the difference can be seen is in their mental state and lifestyle changes because of the pain.

I wanted to let you know how much I agree with your observations and wish other practitioners felt the same!

I can attest from personal experience that nothing is more frustrating or demoralizing than when a physician says "Your back can't hurt that bad, you're smiling." Receiving that comment last week after almost 4 months of pain from 2 herniated discs was enough to absolutely infuriate me! :angryfire

Thanks to all you nurses who look beyond the façade many patients with chronic pain put forth; it can make all the difference in the world for a patient to know they are heard and that someone truly cares!

higas · Oct 4, 2005

I've dealt with Fibromyalgia for about the past 4 years. I'm not a whiner, I am very exercise and nutrition conscious, I run on the local EMS squad and use very few narcotic pain meds, in fact when I relocated from west to east, I brought many pain meds with me, all of which have expired. For people who really do have Fibromyalgia and weren't given just the catch all diagnosis, I have found that a combination of swimming, flaxseed oil, pain meds, and muscle relaxants help. I have given up seeking help through the medical profession because I know there are so many seekers that first I have to prove I'm not at the doctor because I am one. So...what I know from taking Kaiser Permanente's 7 week nationally recognized pain management class is that you have to implement a multi-facted approach and you need to get your Mom up and moving. It hurts to get moving, but even more so to sit still. Even if it's just 1 block 2 times a day or a little moving in a pool. Too bad Ohio isn't set up to have affordable ways to get low-impact exercise

For those of you who know me well, you know that Fibromyalgia is one of the main reasons I went into pain management. After seeing my mother suffer with the disease for many years, I became all to aware how under treated the disease was and then began to see how under treated ALL pain was.
Hopefully this thread will allow us to expand on the history, presentation and proper treatment of the disease.
To start things off, here is a study that I found which I found to be very helpful.
Pain Ratings in Fibromyaliga...0-10 isn't enough!
Dave
A NOTE about this thread.
ABSOLUTELY NO negativity! If your goal is to come in and debate whether FMS is real disease, if these patients are in pain, the use of narcotics... Hit the road. This isn't your place. This thread is about how to HELP those with FMS. Not give them any more crud then they've already endured.

srk · Oct 4, 2005

Not everyone has "imagined pain." We are taught as nurses that pain is subjective, in fact we are taught from the time we are children that when we get hurt we should just tell the truth. In my opinion, most individuals do not fabricate stories of pain and with my patients who have had fibromyalgia the normal methods of pain control are just not enough to relieve chonic pain with acute onset symptoms. If analgesics are not enough then please allow them the control of telling you what has worked for them in the past.On one occasion I had a pt who had hip replacement surgery and had been without her dentures for approximately 16 hours afterward. This was just enough to cause her FM to really take over. She wore her teeth at all times and because her jaws were aligned improperly (TMJ) after a prolonged period without the alignment she was used to her whole body started rebelling. It was more difficult to get her post-operative pain under control due to the fact that it took a whole day before her or her family mentioned that she had FM. The doctor who did her surgery was not even aware of it because he thought she was just not getting enough pain control from the narcotics. In reality all it took was getting her dentures back into her mouth and some repositioning and light massage on trigger points that were not unbearable. I learned more with the pt's description of her pain needs than any manual or computer program. I am always reminded to listen to pt needs and reply to them individually.

StudentNurseKelly · Oct 4, 2005

Hi,

It has been awhile since I've posted here. I was diagnosed with fibromyalgia several years ago. As for how someone should act when they suffer from chronic pain, all I can say is you can't cry all the time. You learn to deal with it as best you can. I have had some interesting news regarding my health. I was so tired of being sick and hurting, so I finally found a fibromyalgia specialist. This doctor is great, she tests for a lot more than any other doctor I have been to see so far. Anyway, it turns out I have Lyme Disease. Plus several other bacterial infections. So all this time I have been sick, it has been Lyme. I am on a antibiotic now. It is making me extremely sick, but my doctor said I would get pretty sick before I start to get better. It makes me feel like I have a bad flu and my joints are all on fire. I am hoping and praying that I will get well and be free from pain soon. I wouldn't know how to act if I didn't hurt, haha! There were 2 tests my doctors office uses for Lyme, one of which costs $180. but it sure is worth testing for. Anyway, if you haven't been tested for Lyme it might be a good idea. It never crossed my mind that I might have Lyme disease before. www.lymesite.com is good, or just do a search. Fibromyalgia and Lyme disease have many of the same symptoms. I hope that once my lyme disease is cured that I won't have fibromyalgia anymore.

God Bless you all and have a pain free day!

Kelly

bsnrnoh · Oct 4, 2005

I just wanted to add my :twocents: to this discussion as a 10 year sufferer of fibromyagia who was recently diagnosed with celiac disease and is now pain free.

If you have IBS symtoms in addition to the pain, fatigue and depression get checked for celiac.

It has changed my life. I am now pain and medication free, all it requires to test is a celiac panel blood screening to determine if you have it. The treatment is a gluten free diet for life, though I am researching holistic cures at this time that claim to increase tolerance for gluten.

Feel free to PM me for information.

If you do not have the IBS symtoms it is unlikely but not impossible that you have celiac disease.

Best wishes to all and I am not saying that fibromyaglia is not real, I do believe that it is, but if misdiagnoses is the problem then no medication, nutrional advice aimed at fibromyagia, or exercise routine will help.