Quantcast

Living With Fibromyalgia - Online Support Group

Running out of options

The pain management clinic I go is about at the end of options for my fibro. We’ve tried gabapentin, lyrica, Norco, Percocet and nothing has helped. I did just have a rare 27 day run with no pain, but I wasn’t on any of the above. However, I had a flair from hell over the weekend. I do think a magnesium malate supplement helps some. My visit with the clinic today was depressing. The dr told me he wants me to try cymbalta, which I hear has lots of side effects. He also gave me a lidocaine topical cream to try. If these don’t work, he said we’re out of options for now. There is something called lidocaine IV infusions, which I just don’t know if I’m willing to do. They only work for about 45% of those who try them.

I have tried a lot of pain control options also. Pain cream with Lidocaine has helped some. Norco too but not good for liver. Resting with heating pad helps lots. I am wondering about CBD Oil. Also doing massage every other week. But when storms are approaching it is much more painful in muscles.

Talk to you doctor about medical marijuana, it’s helping me so much and I’m also on Cymbalta 90 MG and that’s it. I lost over 80lbs once I got all those other medications out my system. Medical marijuana can come in pill for, liquid which is the tincture, vapor which is only for rescue pain and medical CBD for inflammation. I’m more mobile like never before and diet helps also. I noticed certain foods and alcohol work against me too so, I cut them out.

1 Like

Medical CBD also come in creams and let me tell you it really works

1 Like

Hi, Don’t give up. It takes time to find the right combo for each person. I take 100 mg of Lyrica twice a day and Cymbalta at night. Doctors need to start you on low doses then increase SLOWLY. We all tend to be chemical sensitive meaning that new drugs need time to adjust. Either they work out or we get bad side effects.
I also take seratraline at night now because of depression but studies have found that mild anti-depressants held to depress pain. I find it helps me sleep better.

Having said all this- each new drug is scary. I recently had surgery and they threw all sorts of new drugs at me including percoset which almost bottomed out my blood pressure.

Not everyone reacts the same. I also LOVE acupressure because it not only helped with pain relief but also balanced me emotionally, physically and gave me more energy.

1 Like

I was put on Cymbalta when it first came out and I had bad reactions to it. One of the side effects that I had was it really messed up my eyesight and it never improved after stopping it. The other side effects were swelling in my feet and ankles, confusion along with trouble with my memory. I was very lucky for most of my diagnosis to have a fantastic doctor who believed me because he has Fibromyalgia himself. When the healthcare system started to fall apart he retired in 2011. He was doing research on it and he would read articles that I took to him. That is how I managed to find a medicine that helped me. I have been on Fentanyl patches off and on for almost 18 or 19 years. After he retired I have been going to a pain management clinic and they ordered a lot of different tests. They found that I have fractures in my spine. Unfortunately, the clinic that I go to was just purchased by another doctor and is making them cut back on the dosage of the fentanyl patches. Then in order to control the pain they are prescribing Percocet. I would rather stay on the dosage of fentanyl patches that I have been on for years. I had even been told how happy they were about me always being compliant on my drug counts and never asking for refills early. Then at my next appointment is when is when they also stopped prescribing Ambien. Since then I haven’t slept more than 1-2 hours a night. Now, they have prescribed Trazodone for sleep but that doesn’t help either so I tried adding melatonin but I still haven’t slept. If your doctor would be willing to try the fentanyl patches might work for you. I like them because you put them on and you don’t have to worry about them again for 72 hours. For a while before I have had more injuries to my spine I was able to control the breakthrough pain with diclifenac or if I was having a bad flare up then I would take Norco for breakthrough pain. I didn’t mean for this to be so long but I’ve had Fibromyalgia for so long that. I have a hard time squeezing everything into a short post. Hopefully you’ll find something that works.

CBD has been a miracle for me. And I take the generic Cymbalta Duloxetine. All the other stuff were no good for me. Cymbalta was also a real benefit for me.

It isn’t legal in my state, unfortunately.

What dose do you take? So many people say they gain weight and get brain fog on this drug - like Lyrica.

I take 60mg a day. I also take it at night so I can avoid the drowsy effect. Only it doesn’t make me drowsy. Really when you could get samples we found I did better on 120mg. That was back when it was in the thousands per monthly supply. Now I find the CBD takes the need for the larger dose away.

When I tried to take Lyrica I was only tired and brain foggy. Worse that and others gave me a odd sleep experience. It’s like asleep and aware of everything! Wind, rain, husband’s bathroom trips, kids messing around. It was worse than a nightmare :tired_face:.
I suspect it maybe why some have the drowsy effect. My doctor also mentioned that if a patient had no problems with Cymbalta, Lyrica was NOT a good match. The opposite for the ones that take Lyrica. All you can do is try it out.

Before going on the “pharmaceutical” rollercoaster, you may want to try Magnesium supplements. Now there are various types of magnesium with their own purposes, and you need more than just one type. Its hard to believe, but most individuals have a magnesium deficiency. Wow, to have a 27 day run, its been over a decade since I had one of those. Hope to hear from you and find out what the witch doctor decided.

I’m not taking any fibro meds anymore. They’re not worth the side effects for me. I am taking 625 mg of magnesium malate (I had my magnesium tested and it was low.). I’ve read where the malate type is best for fibro. I do believe it’s helping. I’m still doing a lot of hot Epsom salt baths. Critical for me before all else is keeping my stress in check that required some hard lifestyle adjustments like having a lot less on my schedule, not worrying about things I can’t control and getting enough sleep. I’m not having anymore 26 day runs with no pain, but I do have 6-7 day runs.

1 Like

That is good news with the magnesium, but there are other forms of it. Have you used sulfate in the form of a lotion? or citrate and oxide supplements? You can even get magnesium oil for external use. I remember when I had runs like that, but now it is 24/7 hell. Living with fibro, there is only remission and relapse. I’ve been dealing with it for 30 years. The first decade I meditated and tough threw it; the second decade I did the whole med, physical and massage theory thing (didn’t work at all,) and this last decade has pretty much destroyed my life. However, the only relief I have is with the “all natural” alternatives, which includes magnesium supplements. The medical community still have more questions than answers, and the only way to advance forward is for people like us getting together to make a difference and make the medical community try harder to find a solution. We are not drug seekers, its not all in our heads, and were not problem patients, which is how the doctors treat us because they can’t do nothing for us. There is someone, somewhere, and something out there that can help, just cannot seem to find it yet. Until researchers, scientist, and doctors decide its an avenue worth dealing with is when we will have the answers.

1 Like

Hi, Aphrodites
I hear you about the fatigue, the pain, the the feeling that you are just not going to make it through the day. I don’t have Fibro, but I’ve been “gifted” another disease which gives me chronic pain, fatigue and such, so I’ve been some of the same places you have. At one point I had excruciating leg cramps, and they were greatly helped by a Mg citrate supplement.
No, we are not drug seekers, but we are seekers of relief from our daily misery, aren’t we? I had two decades of not being diagnosed, and during that time fibromyalgia was considered the most likely suspect. I wasn’t offered much (well, ok, make that any) help. What I should have been offered was a consult with a rheumatologist.
Rheumatologists are specialists in fibro and other diseases that can be mistaken for fibro. Apparently, there are over 100 different diseases that Rheumatologists diagnose and treat. Have you been to a rheumatologist lately? (Seeing one twenty years ago doesn’t count: you change, and the state of the diagnostic art has changed a great deal in that time.)
My family doc mentioned fibro several times over the years, but always in the context of “nothing can be done, you’d better start exercising and lose some weight”. Had I been directed to a rheumatologist before I ended up with the joints of both feet wrecked, I’m certain a rheumy would have diagnosed me with Psoriatic Arthritis many years before I in fact got the diagnosis.
So my question to you and everyone on this thread is, did you receive your diagnosis from a rheumatologist?
Seenie from ModSupport

1 Like

No, my diagnosis came from my reg. doc, but he has a lot of knowledge and experience on arthritis (which I have on the spine and neck.) I have been tested for the other conditions, syndromes, and diseases that mimic all the symptoms I suffer from. I like to call it the alphabet disease, because I have been diagnosed with Gerd-(stomach,) GAD-(generalize anxiety disorder,) fibroids, IBS-(irritable bowel syndrome,) restless leg syndrome, migraines, and so much more.

All my stomach issues were due to ibuprofen intolerance, and now have an ulcer for that but its the only thing that helped with the swelling. I’ve been tested for Lyme disease, West Niles; you name it, I was tested for it. They tested me for Lupus and the test said the lupus factor was in my blood, but when I went to the rheumatologist (who was very rude) said it must have been a false positive, and that I did not have it, nor rheumatoid arthritis, it was osto. My doctor consulted with the other docs on staff and they all came to the conclusion that it was fibromyalgia. My white blood count at times are threw the roof, its always high, but the only thing coming out of that is what lupus does to a person, and that is attacking good tissue or organs and now I have damage to just about everyone.

I can’t take most prescription drugs, nor can I take steroids, or anti-biotics (it sends me to the hospital.) Certain drugs they’ve tried me on either gave me horrible side effects or darn neared killed me. The one drug that helped me was Xanax, for sleep, which helped me feel better, not all the way, but to the point that I could get back to work, but they took that away from me and I now back to crying myself to sleep (when I could get any.) They told me to stop taking ibuprofen because of my ulcer, but once again, giving me no hope, meds, nothing… I suffer in silence. I have leg cramps so bad that I cannot get my toes from crossing, sending me strait to the floor. Can’t get help, can’t get disability, can’t work, can’t live; I am just existing, taking air away from others that clearly matter more than me. I have no support system here, I live alone, feel alone, and most likely die alone. This is why I’m angry all the time, depressed all the time. I try, really try to hang in there, but I’m loosing the fight I have left and don’t know what I’m going to do about it. I just had another MRI done to my spine and won’t know nothing from the neurologist until Dec 16th at my next appointment. I’m a wreck, the first MRI I had done a couple of mo. ago was to determine if something was wrong with my heart, did the stress test, but my back and legs couldn’t go fast enough for them. I feel like I’m dying, seriously dying.

Plain CBD with no THC is legal in every state and can be shipped directly to you. Do your homework though. Lots of people jumping in the cash cow. Look for the company’s that consistently come at the top of rating scales AND look for ones who do 3rd party testing (and publish the results). You want to know pesticides, mold, etc Not just cannabinoid levels.

1 Like

Aphrodite…
Have you considered counseling too? There are therapists that specialize in dealing with chronic pain. They can be really helpful. It’s worth a try.

Love your handle name; wish I could. I’m out in the middle of nowhere. I have to travel at least 50 mile plus before I’m in a town where I could go, but driving for me is awful, and I use to race cars, so that sucks. Need someone to drive me, or at least not without working around with someone else schedule and having to come up with money I don’t have for gas. Can’t drive at night and it is dark here at 5pm. My youngest son has a masters in psychology, and he’s no different than anyone else is when it comes to being around me because he don’t understand, but no I don’t go to head shrinkers. I basically done with the medical community treating me like a lab rat.

4 posts were split to a new topic: Supporting Aphrodites

Hi I’m newly diagnosed and on cymbolta 60 mg. I have had great relief from my pain symptoms with it and no side effects