by LisaRose 19 Replies latest jw friends
Lisa try a whole 30 "diet". Its a good way to get over the sugar. You can still have fruit but maybe a serving or two a day.
You stick to grass fed beer and no hormones etc...
No dairy, beans, rice, grains, soy, and more.
THIS is what helped my sister with the inflammation to where she could even jog again!
There is a community, support, its easy to do (in that it isn't hard to understand), and you have nothing to lose.
30 days is nothing.
LisaRose,
You know my pain story. I don't' need to state what I think of made up pain. These diseases strike women very frequently. I suspect female hormone involvement. My hope is that as more women become medical doctors our ailments won't be ridiculed. Sometimes I wonder if there is an epidemic going on. Everyone seems to have FM or CFS. Maybe no single thing will work but a combination of things might.
They have made advances in understanding fibromyalgia and CFS, there are differences in the brain and nervous system, although there is disagreement as to the exact cause, the medical community recognizes it is a real condition, not that I needed any convincing, lol. You still run into people like Mr. Barold, who think it's imaginary or an excuse, but I pay no attention to it, it's just ignorance, you can't fix stupid.
I have actually managed it fairly well, but it is what it is, it does limit me. I have so many things I still want to do, so it's frustrating.
I don't know if I mentioned this before, but if any are suffering from Fibro, CFS, or any other muscle/joint pain, I have had success with a book called The Physical Therapy Workbook. I thought I knew every trigger point, but this book showed me that there are many more than the 18 usually discussed in books on Fibromyalgia. It shows you how to find and deactivate each one. It even helped my knee pain from arthritis. A real massage is great, but many people can't afford them, so this is an alternative, even better in some respects as you can work on your tender spots every day. A heating pad and percussion massager are my friends.
This week I am going to try the FODMAP diet. It's for IBS or other intestinal issues. FODMAPS are short chain carbohydrates and a few other things. They think that people like me, who improved by eliminating wheat, are actually sensitive to other kinds of foods as well. There are five categories, you eliminate them all for a few weeks, then add them back one by one, so you know which exactly which category of foods actually bother you. They believe you can improve your gut enough so that you can have some of the foods that bother you, if you limit the amount and know which ones to target.
I am already better since stopping the Ribose, but I had already bought the food and done a meal plan so I am going to give it a try.
I have never heard of Ribose. I have suffered with it for years and it has gotten a little better over time but there are days when the pain will not get under control and it hurts to even touch those areas. I agree with BOTR about needing more women as doctors to address women's health issues. I too ignore the naysayers who are not doctors and do not do the research or see what we actually go through. I believe diet and stress can make it much worse with sugar and GMO's being the worst things for it. I have noticed that once I walked away from the JW's mine got a little better so the stress was making it much worse.
Stress is definitely a huge factor, as well as overuse of the muscles. I find that it's important to stay active as much as possible. It's counter intuitive, you would think that rest would help, and it does up to a point, but being totally inactive makes it worse.
Epsom salts in the bath help me a lot. I bought some lavender oil and baking soda (a huge bag, at Costco) to mix my own bath salts, that helps with the muscle soreness.
I do still recommend the Ribose, do a search on the internet to read about the studies. Most people do not have the problem I had, so it's worth the risk to me.
I agree with the bath salts and lavender oil. When the pain is bad I will get into our tub with the jets and put that in and it does help a lot. I use to get a massage every week which really helped but I cut back on that. I am going to research the product you mentioned. I do see a natural doctor and he has given me a few things that help and I also see a pain management doctor. I tried the TENS machine but it didn't seem to work.
UPDATE . I stopped the Ribose, and my problems got better, but I was still having bubblies in the bowelies. It was very puzzling, as I am on pain meds and my usual problem is the reverse. Usually I have to take Miralax on a daily basis, or things just shut down. Also, my pain issues were getting worse. I take two extended relief tablets a day, and that usually handles my pain pretty well, but I started crashing in the early afternoon and was white knuckling it by 5:00 PM, the time for my next dose.
I Had received generic pain meds last time, so I went to the pharmacy to ask why, as I though that might be part of the problem. It turns out that THEY GAVE ME THE WRONG MEDS. While it was the same basic medication, it was 15 mg all at once, so the last eight hours I was getting nothing, as compared to the extended relief, which lasts the whole twelve hours. Since my pain is constant throughout the day, I was on a pain roller coaster.
I am livid. The last two weeks have been hell, honestly, I was having suicidal thoughts. I also feel stupid for not having questioned it, I just assumed my insurance company wanted to save money by switching to a generic. I sometimes have flares, where things get slightly worse for a few weeks, but I can usually get them under control by various coping mechanisms I have. My condition is progressive, so I want to save the heavy duty pain meds for when I am older.
Lesson learned, don't accept a change in medication unless you know why. It's very humbling to realize I could have prevented both these issues.
CFS may have stemmed off of Epstein Barr and I know some older people who were diagnosed with CFS after a miserable bout of chicken pox later in life (my case). Epstein Barr is/was a legitimate virus and seems people were told they had CFS when all other illnesses were ruled out. When I was told I had CFS I took it with a grain of salt but realized it was horrifying stress - low grade fever, swollen glands, hair falling out and I have tons of hair - so tired I couldn't (what a blessing) make it to the evil hall. The gawds work in mysterious ways. There are some illnesses/viruses like CFS that people go hummmm about - one of them is Valley Fever which anyone is susceptible to after living/traveling the San Joaquin Valley (major food belt of the world). It's real - flu like symptoms, fever, etc., and takes serious rest (antibiotics sometimes) to revive from. Jus sayin - who knows for sure.
LisaRose - I understand people trying different health aids to alleviate the body pain - headaches are bad enough. Thanks for the warning.
Lisa Rose:
Have you looked at getting your meds from a compound pharmacy if your insce will cover the costs?? They dont use fillers that react in a sensitive system like yours. I know, as my son is going through the same situation as you and he cannot get the pharm pills they regularly dole out - only compound pharm is his savior depending on the issues.
TL
I get most of my meds through my insurance pharmacy mail program, I have no problem with that, they auto refill and get paid through a debit card, I never have to think about it.
The problem is if you get an opiate, you cannot do mail order, you must only do a month at a time, and you have to present the script in person. There is a lot of extra scrutiny with pain meds, the pharmacy gets audited, so they are quite picky. They won't fill the prescription if it's less than thirty days from the previous one, no matter what date is on the script. Sometimes the pharmacy questions the signature, too small, the ink being two colors, etc. I finally told them to call the clinic if they have a problem, I just take what they give me, so they stopped that. That's why it's so weird that he got it wrong, they have to go get it out of a locked cabinet, you would think they would be even more careful, knowing they get audited. I have been going there for three years, the regular staff know me by name and what I take, but the guy that made the mistake was filling in.
The important thing I got out of this is that you should always, always question it if your medication changes. The pharmacy manager for the chain called me and was quite upfront that it was their error, he said the pharmacist should have consulted with me to make sure I had taken the medication before, then the mistake would have been found, besides which they have a number of checks and balances to make prevent this, but mistakes happen. I got the feeling he was going to get a major a$$ chewing.
The problem is that, knowing I will probably be on pain meds long term (my condition is progressive) , I take the smallest dosage possible to keep the pain in check, That way it is more effective long term. If you take it to get high you quickly build up a tolerance and then it's not effective. I was on a higher total dose at first, with the regular, four hour pill. By switching to the extended release I was able to cut the dose, because I don't have the highs and lows. The low dose means I sometimes have to work really hard to keep on top of the pain, and not getting the extended release really messed me up.
I believe they are going to offer me a small settlement.
