I also have RA and was taking methotrexate and getting remicade infusions once a month, after months of misery...debilitating fatigue, pain, insomnia, etc., hardly able to even work (and I even work out of my home), I'm in sales....and I couldn't even do that! I also take Cymbalta (60mg), for the last 2 mo., but am continuing that.
Two weeks ago I stopped taking both RA meds, I decided it was time to see if meds side effects were also making Fibro worse, and try supplements. I have had insomnia for almost 8 mo., and for that I just found "Somnapure" by Peak Life, all natural sleep-aid (also saw it on either RA or Fibro website), sold online and CVS. I take 2 about an hour before I want to go to sleep (for the last week) and I have already seen improvements. I've slept a whopping 6 hrs. STRAIGHT every single night for the last 7 nights...that in itself, for me is HUGE, as I was only sleeping in 1-3 hr. increments! I take 2 in the morning and 2 in the evening. Between those 2 things, I have felt better, had more energy, "wanted" to leave the house.....than I have in 9 months. I always loved going out to dinner, but since my Fibro/RA "disturbance" in my life...I never feel like going "out" to dinner. This past week, I have gotten 3 sales which means I had to "leave" my house, actually "meeting" with people, which I ALWAYS loved, and felt uncomfortable doing for the last 8 mo., not to mention the brain fog while trying to write a contract and using a calculator! lol Well I did it, and I've had so much energy....for the FIRST time in 8 mo. got "bored" while lying in bed on Saturday while watching a movie. I went out to dinner THREE times in the last 5 days.Now I'm just praying that it continues and it's because of these 2 supplements I've started taking. I think because I have finally started feeling so good, I have over done it a little...and I'm feeling kinda crappy today, but that's ok...I'm thankful something seems to be helping, I guess you should still take it slow...even when you're feeling fantastic! : )
I know different things help different people, but you might want to check these two things out. There's a 2 week free trial for both of them online.
I will keep you in my prayers, and hope you find relief soon!!
I'm with you. I have pain, but my biggest issue is the fatigue. Now, I am not a dr and everyone can do with this info as they like, but I had been taking this liquid drop thing that I put in water called OXY E cellular oxygen enhancer. I know it is claimed to work for cancer, but I just wanted to try it. I gave me back energy. It also helped to regulate me and reduce my IBS. I am writing in past tense because I stopped taking it about a week and a half ago only because I had/have a stomach virus and as it is a detox sort of, I didn't think I needed to take something like that with the virus. But I can tell the fatigue is back. So it only works if you take it and you have to build yourself up. I was taking 10 drops 3x a day sometimes 4x a day. That seemed to work for me. I wasn't missing my one day a week at work. I was actually going to work 5 days a week. It wasn't a cure all, I still couldn't over do things, but I could do more things. One problem I noticed is that I got dry mouth and needed to drink more water.
Hello, I have recently found that taking higher doses of some vitamins has increased my energy level. I take 5000 iu of D3, 250 mg of B1, 2000 mg of B12 and Mag ox 400, which has a high dose of magnesium in it. I have been able to get up everyday and function, do a light 30 min workout 2-3 times a week and take a 1.5-2 mile walk 2-3 times a week. I also take 200 mg of Lyrica. I almost feel normal again!!
I have found doing the light exercising helps me to sleep and eat better and my body loves the stretches!! I do still have a day here and there where no matter what nothing is going to get done, but not everyday like it was!!
I wish you luck as being so tired all the time is irritating and draining!! This is so not a fun disease to have and it is tricky to stay on top of it!!
Caffiene is death for me--it is like having the stomach flu, can't keep anything down! I have to be very careful to be sure I get plenty of anti-inflammatory foods: spinach, carrots, broccoli...even if I have to force it down like it is medicine! And sometimes with spinach I do have to force it down--but it sure is filling and makes a huge difference the next day!
Be careful with regular folic acid because if you have the MTHF gene mutation, your body is unable to convert folic acid to the active form methylfolate. This can cause serious problems and folic acid build up in your system. Doctor should test you for that defect before prescribing the folic acid.
Anything that removes toxins from your body, keeping bowels moving, addressing any nutritional deficiencies(work with a doctor on this), deep breathing, light exercise. Rest and dietary changes.
I had some good results with de-ribose(Corvalen brand) but it did stop working after so many months but others that I know still get benefits from it.
anna....be safe, check everything with your doctor. If your doctor is not familiar with a certain substance, bring him some written information about it so he can determine if it is ok for you to take it.
I had insomnia starting at age 9 and continuing until age 60. It is awful and I’m sure that it just accelerated the rate of decline regarding my migraine and fibro issues. I was hospitalized about 4 years ago due to intractable, severe migraines that went on for months. I was a complete mess. I was in a head pain wing of a hospital and the docs took me off the meds I had been on and changed to new meds. The thiing that helped the most was trazadone which was prescribed for sleep. I haven’t had insomnia since then. It was a great relief to be able to fall asleep quickly and stay asleep for 8 hours. I could not tolerate other sleep meds.
Yes, I have fibro, chronic migraine and hypothyroidism. Just had my gall bladder removed, too, but I am 64 and have had fibro and migraine since age 22 so things just build up over time. Hard to know what is age-related or fibro fatigue or both. It’s been a tough year.
I do want to add, yes ask your doctor before you start anything new. My doctor did blood test to check my vitamin levels before I started this regimen and I check in with him often. He also okay’d the exercises I do. If you don’t have a good doctor keep looking, they’re out there!! I wish you the best of luck!!
I just got a prescription for tramadol today, and took my first dose about 1.5 hours ago. Has helped with the pain levels at rest. The key point will be if I can sleep without moving and hurting myself so much that I cry out and wake up my husband.,
Good question, Azlily. Wish I knew a good answer. I'm on both Lyrica and Cymbalta, and it helps some, but the side effects include sleepiness (yes, I have had my face crash into the keyboard) - so I'm just greatful I'm retired and don't have to keep up today's working pace anymore.
The best I can offer is a coping mechanism that's been mentioned many times in this forum. It's The Spoon Theory at http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf . It's about learning to live within the new boundaries that life has given you. I first read it several years ago, and I made copies to give to my family and friends. If I were still working, I'd have given it to co-workers, too.
Once I'd understood the point of the Spoon Theory, the two other things I've had to learn are
How to say "I'd love to, but I REALLY can't" (in other words, NO) and
How to get off the roller coaster. That's when you have that blessed good day, and try to jam your entire to-do list into it - then pay for it with 2-4 bad days when you get nothing done. I've found that 3-5 minutes of quiet time, just breathing deeply (or mindful meditation, which is what my pain doctor is teaching me) every hour or two during the good days helps me slow down, count my spoons, and decide when it's time to say "I'm not finished, but I'm done for today.".
BTW, my daughter has added her own piece to the Spoon Theory. She says if you don't stop once in a while and examine your remaining spoons, you might find that the ones you thought you had at the end are actually slotted spoons and won't hold any energy.!
Sorry I don't have any miracle cures to offer. If I ever find one, you'll see it in this forum IN ALL CAPS!!!!
I too suffer more from fatigue than pain. I did start taking b1 which I found a fibro study online about it and it helped my fatigue. Then I added acetyl L carnitine which is also helping. I am thinking of adding co q10 next. It’s all trial and error. Hope you find something that helps.
Yes...Thanks Lovett. I have a lot of experience with aromatherapy and I've learned that a lot of people assume that the fact that supplements and remedies such as tinctures ect are natural,that they're in fact safe. Not so. Natural supplements and herbs can conflict with medications the same way some meds interact with others. So be careful. There's really great information here and I see things I've never heard of. So I write them down, do my research, but always check with your doctor before taking anything new.
As for insomnia and fatigue. I've been on Zopiclone(sleeping pill) for years and it works pretty well for me.Added Elavil at night for pain and sleep a few weeks ago and thought I might be able to reduce the zopiclone (I take 2) but I couldn't. I haven't seen anyone mention Zopiclone so I thought I'd throw it out there. I had hallucinations on Trazadone , that's why I switched. It knocks me out pretty well most of the time.
I am taking ortho molecular vitamine injections, followed by acupunture, and it's a process. I find the pattern of pain and fatigue is changing with the treatment, but the pain seems much less and paradoxically, the fatigue is worse. I take this as a regulation process with my adrenals going thru loopdeloops trying to normalize, a sort of "detox" of my old dysfunctional patterns. I've been doing it 3 weeks now and as I take my BP once a week, because I had high BP a while ago, which has calmed down now, the cuff would cause such pain if raised over 180, that the FM would kick in and I would have a ficticious elevation in BP from the pain of taking the BP! Now I can tolerate 200 squeese. Also, with the treatment, I get fatigued sooner. I don't know where this will go with me, I'm just glad the pain has calmed down a bit.
Very interesting information! I have never heard of these injections, but they sound promising! I would imagine that they are given by a holistic type of Physician?
So glad you are getting some relief. I'm a big vitamin fan, I purchase my vitamins through my DC, they are the vitamin Gurus, so I'm certainly interested in how you progress with this.