I hope things will improve soon for you. I don’t know anything about the American health Care system but I do know that I tried LYrica and it did nothing for me except make me so dizzy that I had two falls! So don’t rely on such a med for help!
I am retired now so things are different for me and I can’t imagine what it would be like to try to earn a living with this condition.
I find that I try to keep life as simple as possible, walk for a few minutes several times a day, rest forom lunch times onwards, the pleasures of retirement and in all honesty have as little to do with the health services as possible!Although I am a nurse, I have yet to find in Oz anyone who actually understands or knows anything about the condition. I take a mucle relaxant, tramadol when the pain in unbearable, and vitamins. That’s it. I don’t know that this note has been of any help but I hope so. Take Care Barb
Are you near Oak Creek, WI? I found a great rheumatologist in Oak Creek. He's the only one who has helped me. Let me know if that's anywhere near you-I'll give you his name.
Hi Sandi, I tried gabapentin and it worked well for pain but cause weigh gain, but does not do that is everyone. Lyrica is closely related and can cause weight gain too. It is much more expensive since they have not created a generic. I am taking Cymbalta now that is helping with pain and depression. It is also a little pricey but you can download coupons online and even get a 30 day supply from the manufacture for free. Watch for ankle swelling and allergic reactions such as mouth swelling with Gabapentin or Lyrica. I take Ambien and that can help with sleep which helps a lot with fibromyalgia. I use hot packs to help relax muscles too. I created little bean bag size rice bags that I can use in multiple places if needed-heat in microwave at work. They are so small no one notices. I am tired of everyone acting like it is in my head!!! I am working on trying not let others affect my attitude. If your doctor starts that crap go elsewhere-you deserve a lot better.
The spray works instantly, and lasts for hours. The only thing that helps me with all of the pain and creepy crawlies down the legs only compared to child labor is Lyrica. The spray helps my bone pain! People would kill you for it though! They're huffing it!
I’m not far - it’s just south of Milwaukee. A hop skip on the expressway. Please message me his name! This is astounding news! Thank you so much for mentioning this. The way I feel about a good doctor - I’d volunteer to go to the moon if one was there! big hug~ Sandi
I am very sensitive to the drugs used for Fibro - savella and cymbalta froze me up and gabapentin did nothing. Didn’t want to up the dose anymore as the doctor thought I’d have some bad side effects. I am leary of lyrica, but right now it’s the only thing I haven’t tried. Going to take it slow. Hoping the new rheumie has a totally different protocol, as she’s young and out of med school. So appreciate all the hints and info - I’ve added then to the back of my journal under hints. I refer and reread it so much! hugs to all ~ you have all boosted my spirits once again :). Sandi
Hi what state do you live in have you ever tried to get state insrance thats what i have i dont work. thank god i have it my doctors suck they rather lecter me or go for the doctors then help me i asked my primary to increase my pain meds no i wont because i wont go behind your neuro back they rather see me suffer my reumy said the same thing my leg hurts but all they did was increase my topomax.i hate doctors.i tell you i have arithritis in my right knee but know one believe me he did a emg course it came back normal she should did on the nerve on my back doctors dont like to do tests down on the cape thats why i like my doctors in boston. he the only one who cares.all i want i do is cry
Hope you are getting some relief. I am just starting more tests, MRI, EMG tests because my neuropathy seems to be getting worse. It is so hard to find just that right doctor who listens has compassion and is willing to go the extra mile to help their patients. If I could clone my Chiropractor I would make a million of him. He is so willing to try anything he can to help me out. Unfortunately he can't prescribe drugs so I have to rely on my Rheumatologist who doesn't really listen, just hands out prescriptions. I hope you find a good doctor, one who has some empathy and understanding for what you are going through. I don't know how you work full time, I have trouble working just 20 hours a week sometimes! You are so strong! Keep good thoughts and sending warm hugs.
Are you single ? If so there’s your answer, state insurance. Hey we all pay taxes. Take a ride to boardwalk mam. And my personal suggestion for full body pain is fentanyl patches, you wear them 3 days at a time and they release a certain dosage of meds in your body per hour. There’s no high, no side affects I had or heard of. And also ambien is about to be pulled of the market, it’s to dangerous. To many sleepwalking/driving accidents. And next morning hangovers.
Are you single ? If so you can get state medical ins. No rx will be over $3. And if not I hate to say this but either get on ssi and by age you can get Medicare. Or last resort and I know people who have had to do this, and it’s a touchy subject but annulment. Only single women can get Medicaid, know dumb rule. But all dr’s are free and like I said on the rx’s. Or move to Canada lol
Have good insurance - just costs a lot until you’ve reached the limit on your plans out of pocket maximum. Not planning on leaving my husband and the insurance us through his employer. At my work I get a monthly stipend in Miri of taking health care benefits. It’s a great perk but who knows how long that will continue for educators in Wisconsin. Politics I am more than willing to pay for a GOOD doctor. It’s when I get taken for a ride with some of them that I have a problem with.
There are so many possible changes coming at work this summer and am just waiting to see how it will effect me - lots of intense training on new programs, less employees to help, it may help me make the decision that I can’t continue working. Fire drill on Thursday set me off with the noise and the strobes - people just can’t imagine how that affects someone with Fibro!
Hi Sandi - please be very careful about taking Lyrica. Although it does work for some - the side affects can be pretty bad. I took it about 2 years ago and after just the 3rd day of taking it, I developed a horrible rash and swelling of my lips and face. I had to go to ER because I was so scared that my throat would close up - one of the side affects. Laurie
I will. Savella and cymbalta froze up my neck, face muscles and it felt like my throat was closing. I’m on day 3 of only 25 mg. and haven’t noticed anything unusual and very much hoping I don’t. I so want something to relieve the pain - it’s been going on too long and I’m so tired. Had a great massage yesterday which was wonderful and helped relieve a few knots. Best masseuse ever - she mixed some oils for pain relief - was great. Heated up the areas and I brought some home for my shoulders, back and elbow.
I understand completely. And I’m not saying leave your husband by any means. I’m saying survive. My fiancé had the best bcbs ins but changed jobs and with no ins paying cash with Targets discount plans his rx’s are a 1/4 of what they were with ins. That’s crazy. And if you are considering disability it took me a year and a half. You do get back pay. But “you” cannot" work or “show income”. So have a plan !
Glad you wrote this Sandi. I'm still reeling from my most abusive Dr. appt ever 2 weeks ago.I'm in Canada where it's free, but If I lived in the states and this happened, I would take my business to a naturopath. I'm going to find one here in Canada where I'll have to pay for the services, but I can't handle the abuse anymore. It's like having a husband that beats you but you have to keep going back because you need help so badly, so you can't get away from the abuse.I lived in the states for 20 years, and when we couldn't afford insurance, we used natural remedies. There's a natural alternative for almost every type of prescription, and naturopaths are so much kinder. They did not become a naturopath for the money and prestige, but to help people feel better. I have become allergic to almost all prescriptions, and since doctors can only pass out prescriptions, I'm sure I frustrate them as much as they frustrate me, so I have used natural supplements, herbs and alternative treatments for a long time and now will lean on them more heavily. I'm sure sorry that you also are dealing with the cost and abuse. I was bankrupted only by the doctors when I lived in the USA. And after all that, they didn't have any answers for me anyway.
Thank god I now have a good rhuematologist. It may not help you much but she is very understanding. When she diagnosed Fibro she made a point of telling me that some doctors still think it is all in the mind but she told me about an enzyme in csf called substance P which apparently is raised in fibro sufferers and increases pain messages sent to brain. She has prescribed a drug called Duloxetine to take at night and she told me how it works to help the pain. Apparently it dereases substance P and increases noradrenaline and seritonin in brain and told me they have been getting great results in the states with it when given to fibro sufferers. I have been taking it for 7 weeks and am now averaging about 12 hours sleep a night which is helping me deal with the pain.
I am more than willing to pay for a GOOD doctor. It’s when I get taken for a ride with some of them that I have a problem with.