new to fibro

Susan - posted on 05/15/2009 ( 11 moms have responded )

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Just was wondering what others with fibro did to deal with the chronic pain. I am newly diagnosed with fibromyalgia. New to the diagnosis not to the pain. I've been in consistent pain for about 2 years now ever since a recluse spider bite. Just now have a doc that has given the pain a name-fibromyalgia. Celebrex and ultram is what I am on now. they just dull the pain some of the time but not all. Not wanting to be stuck with just drugs (our son is on 9 a day) to treat the pain so asking for suggestions as to what works and doesn't.
Thanks for the suggestions.

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Dr. Peggy - posted on 05/21/2009

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No, NO. Didn't mean to imply fibro is "simply a matter of pain perception". There is nothing simple about my fibro although I don't have nearly the history you do. What I wanted to get to is we do know that fibro people have more substance P in our spinal fluid so we do feel pain more and more of our brain is engaged when we are given a pain stimulus (central nervous system stuff). This is not a matter of perception. It is a matter of a physiological state that is different in fibro people. We don’t think we feel pain. We feel more pain with less stimulus than the rest of the world.

And your point about most of us having multiple chronic conditions is true in my experience, too. I sometimes wonder if my past background of long term chronic pain (since I was 24/am 58 now) caused the physiology of my body to change to present as fibro, i.e., inability to sleep, fatigue, pain, fibro fog, etc. Did I always have these physiological differences, but the differences became fibro due to the chronic pain combined with the fact that I was a Type A ‘push, push, push’ myself who never really let herself stop when she was tired? Kind of a chicken or the egg question.

I also appreciated your statements about the differences in your pain from different causes. Yeah, I do understand that one. At the eye doctor yesterday, she asked if I had headaches. LOL!! I said I had fibro and headaches come with the territory and started naming off the types – stress, muscle tension, lack of sleep, sinus, allergy, migraine, cigarette smoke, and “I don’t know, but my head hurts.” They all feel different. Does the rest of the world do this?

Now days I don’t know what normal is. PBB

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Crystal - posted on 01/09/2013

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There really is not a lot you can do except learn what cause you to be in more pain and try to take it easy at all times. I have had fibro and r.a for over 5 years and have tried all pain meds I'm now on percoets and been for last two years and they barely subside the pain so be careful and try whatever you can not to have to be on narcotics

Joaquina - posted on 06/06/2009

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Quoting Susan:

new to fibro

Just was wondering what others with fibro did to deal with the chronic pain. I am newly diagnosed with fibromyalgia. New to the diagnosis not to the pain. I've been in consistent pain for about 2 years now ever since a recluse spider bite. Just now have a doc that has given the pain a name-fibromyalgia. Celebrex and ultram is what I am on now. they just dull the pain some of the time but not all. Not wanting to be stuck with just drugs (our son is on 9 a day) to treat the pain so asking for suggestions as to what works and doesn't.
Thanks for the suggestions.





Hi Susan I'm Joaquina(kina) from Atlanta.  I have also suffered for about 2 years like you.  I am on Lyrica and Cymbalta with Motrin 800 as well as Trazadone for sleep.  In the beginning I recall taking over 20 pills a day and becoming addicted.  I went to all kind of specialists like you to get an answer for the pain but everyone said that they couldn't find a diagnosis other than my back pain from a sprain and moving boxes for 3 months at work.  It does get better though.............................The pain specialist suggested that I try pool therapy and going twice a week has made wonders....Are you on SSI?








 

Rebecca - posted on 05/27/2009

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I may have FM but have not been officially diagnosed. I am being treated for it though. I take Cymbalta, Neurotin, Ambien, Lamictal, Darvocet, and about 5 others that are for alergies and asthma. It is awful taking this many meds! I also have a TENS unit that helps. And, I am in physical therapy. This helps alot. It is so hard to parent with all of this. I have two daughters, babysit my 1 month old great nephew, and am about to take in a troubled teen. I also have many neighbor kids coming in and out of my house all day! I love them all but do not feel I have enough energy for them like I used to. At first, I was "just" tired all the time. That lasted for a year then the pain started. That was a year ago. So, about 2 years of dealing with an unknown disease. No fun.

Sharon - posted on 05/21/2009

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I was just diagnosed with fibro last year after years of pain especially in legs and feet.

I am taking Lyrica and Ultram. The Lyrica is great and makes me sleep soundly which seems to help more than anything else. Also take a supplement from the health food store called Magnesium Maleate which is helping, too. I still having pain that moves around from one area to another and sometimes disappears for a time. I was on Naprelan but got ulcers so had to change to Ultram which doesn't work as well. Just relieved to have a name for something that I've lived with for years that Dr.'s couldn't figure out what it was. Finally went to a Rheumatologist and got some answers. Also have osteoarthritis so its hard to know where one starts and another stops. Good to read some of the other posts for clarification.

[deleted account]

Quoting Dr. Peggy:

Lots of you are asking for information. Remember fibro is not a disease or an auto immune dysfunction like arthritis or lupus. It is a problem of our central nervous systems. We feel sensations differently than most. The pain is from our nervous system responding to simple tension or touches as pain, not from inflammation. There is no one med or simple fix.



I actually used to work in Anesthesia and Critical Care in a major teaching hospital and I honestly don't think that nociceptive transmission -- how we sense pain -- is all there is to fibro. There are too many other factors involved like trigger points -- which are very real physical manifestations of it. I do agree, however, that there is no one med or simple fix. 



Another thing to take into consideration is that many people who have fibro have other co-morbidities as well, so many of us also have osteoarthritis and/or autoimmune issues, so we're no stranger to other types of pain. I, for one, have been complaining of pain since I was three years old and had my first surgery at the age of six which happened to be bilateral ankle surgery. I've had over 20 surgeries, in fact -- most of them orthopedic in nature (I had a hip replacement when I was 25 and that was my 3rd hip surgery, and that hip replacement needs to be redone now that I'm 40, but that's complicated by osteoporosis). So I'm no pain wimp. I'm loaded with trigger points and while my CNS is out of whack and does tend to be sensitive, that's not the be and end all of my fibro and I can differentiate the different types of maladies and pain syndromes I have going on and know a fibro flare from, say, an iliopsoas spasm or bursitis or tendinitis flare. I also know when my autoimmune system is out of whack and when that needs tweaking. 



I've seen lots of theories abound about fibro over the years and how there are supposedly quick fixes. I know that my rheumy practically jumped up and down when my Vitamin D level came back as THE lowest they'd ever seen in the rheumatology practice (again, at a major teaching hospital) last year. Alas, I didn't have fibro, he rationalized, I had a practically non-existent Vitamin D level. So I went onto the mega-dose levels of Vitamin D and my level went up but my fibro symptoms were still there. No quick fix there. Ditto for my abysmal blood counts. I still take the B12, do the iron infusions and take the Vitamin D because they help, but they don't "fix" me. 



I think it's important to be careful about these global statements about what fibro is and is not because I think that we simply do not know yet. Yes, I do believe there is a CNS component, but I do not believe that we can absolutely say that there is not an autoimmune component because so many of us have autoimmune issues. Many do not, but many do. I do not believe that we can definitely rule out any other aspect of what fibro can or cannot be because the "medical community" barely takes it seriously so I would just be very cautious when stating things like that is all. But, I respectfully take exception to the statement that it's simply a matter of pain perception as there are identified physical manifestations of fibro that have been recognized by those who study it.

Dr. Peggy - posted on 05/21/2009

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Lots of you are asking for information. Remember fibro is not a disease or an auto immune dysfunction like arthritis or lupus. It is a problem of our central nervous systems. We feel sensations differently than most. The pain is from our nervous system responding to simple tension or touches as pain, not from inflammation. There is no one med or simple fix.

My best source has been the National Fibromyalgia Association. It is 501C3 not for profit organization and sponsors research, patient and health care providers awareness and other things to help us. And my favorite, Fibromyalgia AWARE, a magazine that covers research, traditional and non-traditional treatments, exercise, footwear, diet, people who have FM and people around us, etc., etc.. It is just great. I think I gave the organization a donation of $35 and got the magazine about once a quarter. I have seen it on a newsstand before, too. The organization also has a website: www.fmaware.org Easy to use. Free. Good information.

Also there is great information at the http://www.niams.nih.gov/Health_Info/Fib...
That is really good booklet by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) available on the CDC website and as a PDF file. Has a diagram with the trigger point sites. My husband and teens read it and understood a lot more about what I was going through.

Deborah - posted on 05/19/2009

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I have been suffering with Fibromyalgia for 14 years now. I have now just received a disablity retirement from the State and I am going to the Pain Clinic. The pain is terrible and your body is sore to touch most of the time. Any ideas let me know.

[deleted account]

Hi Susan,

I have been suffering since 1999 and have been prescribed everything from Celebrex to Vioxx to Relafen and others I can't think of. None of it ever did any good and only gave me side effects that were not worth the trouble at all.

I agree with Zoe; I have been sticking with natural/homeopathic remedies, moderate exercise and much healthier eating. My favorite remedy combination is a Glucosamine/Chondroitin/MSM complex along with a B-12 supplement, Omega Fish Oils, and a Magnesium/Zinc complex. I love yoga and also take walks every day. I have minimized sugar (but stay away from artificial sweeteners), fats, virtually eliminated red meat and eat much more whole grain foods. The change in eating habits is not so much for my pain, but for other symptoms and just for general health purposes.

All in all, I feel better than I have ever felt. The aches and pains still exist, but I suspect that nothing will ever really make it go away. Those really bad days are fewer and farther between though, so what I am doing is working (with no nasty side effects). I also have my moments of extreme fatigue, especially after a bad night or over-exerting myself throughout the day, but that is remedied by a good nap or just relaxing on the couch and letting someone else take over. A nice, hot bath (or shower) is also really good for some aches and muscle tension.

I hope this helps a little. If you have any questions, you can always send me message.

(((HUGS)))

Christine - posted on 05/19/2009

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i take norco and soma and caffeine pills for my pain. 1/2 of each-----if i don't feel better after about 1/2 hour, i take another 1/2 of norco and soma. soma works on the central nervous system and changes your perception of the pain----as long as i don't perceive it to be there---that is just fine by me, i'll happily take the drugs. i do take fiber pills and a stool softener with a stimulant laxative to keep things moving. i also take a few other medications for some other things.

right now i feel like i need to do whatever i can to be able to take care of my family. i would love to be off of meds---but i would not be able to function----as it is, i don't function very well alot of the time. every so often i will have a really good day---but they seem to get further and further apart.

[deleted account]

Hi Susan,



I was officially diagnosed in 2000, though I've probably had fibro since I was a teen (at least). I was started on flexeril and never took it regularly, though it did help improve my sleep which helped me cope with pain better, but it didn't help the pain directly. I never really took anything for pain as I've been on pain meds off and on over the years for other pain issues and don't like the way they make me feel (and they usually just change your perception of the pain, not get rid of the pain itself). As it so happens, I take lyrica now along with topamax for epilepsy and I don't think I could tolerate the dose that people take for fibro. I've heard mixed reviews about lyrica for fibro and don't think that I personally would try it for that purpose. In fact, if I weren't out of options for epilepsy meds, I wouldn't take it at all. At my last pain clinic eval, they suggested Zanaflex and I tried 1/4 of one and I'd rather take the flexeril personally.



SO... what do I like? I do gentle exercising within my limits. I actually like pilates, yoga, and swimming (but only in salt water). I prefer natural remedies like homeopathics. I try to rest when I need to (which, to be honest, usually doesn't happen) and watch my diet to minimize sugar, fats, and refined carbs I met with a health psychologist for a few sessions to get some ideas for how to cope with being in pain all the time and she gave me some tips on how to get people in my life to respect my boundaries and limitations without making me feel guilty. She also made a meditation cd for me to listen to at night and gave me some other ideas like biofeedback.

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