Hi Dee, I am using some supplements and herbs but you’ve mentioned some I’m not familiar with at all. Am making a list and will check them out to see if any are contraindicated because of the other meds I’m on and also check with GP and transplant nurse once I’ve done my research. My doctors usual phrase is " check with the transplant team". Haven’t tried massage or reflexology, bit of a chicken, but will look into it next week. Trying to workout 4 times a week, okay for one week, next week only make it twice. I think part of my problem is working to hard, when I’m at the gym, then doing very little the other days. Going to try the yogurt tonight.
Thanks for the ideas, gives me lots of avenues to explore. Really hope your brother is winning his battle, and you’re taking care of yourself.
Gentle hugs.
Hi Susan, your message is a good reminder to me to have positive thoughts and say positive things to myself (I talk to myself all the time lol) and to others. I do feel better when I think positively, look forward to little things, laugh and make others laugh.
I do try not to think about some of the stress/trauma in the past, and in some cases have no conscious memories of them, although I still get flash backs occasionally. I have heard of 5 HTP and will add it to the list to explore further. Need to investigate a lot of things (energy healing, book by louise Hay). Until I joined the forum, I kept telling myself it was just something I had to live with, that pain was relative., and kept just curling into myself.
Hey again B2chi! We don't ever have to live with anything as far as I am concerned! I am learning not to identify with my thoughts (hard work but gets easier), memories are just thoughts that need to be worked through. I think a lot of women (and it is mostly women that have it) with Fibro are trauma survivors. I am both a survivor and a healer so get both perspectives. It is my specialty area as a therapist. I used to have hideous flashbacks with severe panic and it limited my life so badly I was afraid I'd never get over it but here I am! A client said that healing is like a spiral staircase. Every time you think you are back at the beginning you are really up a level. A beautiful picture I think!
Hugs and Hope to everyone because when you keep your hope, faith and trust and learn to love yourself doors open!!
Thanks capefibro my trainer keeps telling me one small goal at a time, I do need to push myself harder; you’re both right, I really admire your son, never realized how disciplined a body builder had to be until I worked with one.
We have a lot in commmon! Let me know how it goes.
I have had to delegate grocery shopping and cooking. After so many years of being queen of my kitchen, it feels weird. But given the exhaustion of shopping and the fact that I actually burned water (ruined the cooking pot), it has been worth it.
Your account of staying up to do the letter is so familiar! That sounds like me! The funny thing is that I sleep better in the daytime when no one is home, and think better after they have all gone to sleep. Any distraction makes my brain take a wandering trip. :)
I agree with all you have said here. The neuroplasticity of the brain is a factor in chemical sensitivity, trauma or prolonged stress, and more. I am looking into a Chakra healing program. How did you go about balancing your energy?
Try prohealth.com or immunesupport.com. They are linked together as sister sites, one with info and one with vitamin products. I have ordered from prohealth and they have been reliable. I believe that is where I found magnesium with malic acid.
I am putting my 2 cents worth in!! :-) There are many forms of energy healing including clearing and balancing Chakras. I have had Reiki and sound healing done, as well as Kabbalistic healing and other things. I use acupressure which has the same idea of balancing the Chi or energy in the body and I use EFT (Emotional Freedom Techniques) which is like "acupuncture without needles". I also have recently started using reflex points on my feet. There are specific acupressure points for Fibro if you research it. If you can find someone near you that does any energy work it is well worth it!
Hi Susan, I sleep well during the day, but don’t get up rested. Trying to stop the cycle, tried sleeping pills, they worked well at 6 am and woke up at 5:30 pm. Stopped taking them. Hoping sleep apnea test will tell me something but don’t know what it’ll do if I can’t fall asleep, lol. Feel I’m sleeping through most of my life, can’t do anything noisy after my husband goes to bed.
Will let you know if anything works.well.
Hugs, Barb (B2chi). The chi stands for the energy I want to find again
For some reason, I sleep very deeply if I take a nap in the late afternoon. It seems to have something to do with my personal body clock. Sleep at night is not restful for me. Even with sleep aids, I wake up at 2am with a burst of energy that lasts at least an hour. Hard to sleep afterwards!
Very interested in how your sleep apnea test goes. Since mine was obstructive sleep apnea, I found an ENT who discovered that my septum was not only deviated but "S" shaped. No allergy spray could get through. My nose closed up when I tried to breathe - you could actually see it! The ENT also put cartilage on the sides of my nose (inside) because my skin could not tolerate breathing strips. I was also missing one sinus, so he opened it up for me. With all my allergies, I am thrilled! I am breathing through my nose for the first time in my life! Sleep has been better quality, too.
The program I am looking at includes meditation, rapid eye movement therapy, EFT, and more. I don't have a reiki person in the area, though I would love to try it someday. I loved doing tai chi, but now I have trouble balancing, so it's off-limits. Yoga is off-limits too because of a weak hip bone (osteoporosis) and spinal injuries.
I love acupressure, and use it on my many trigger points. I have reached the point, though, where there are too many trigger points to keep up with! (I think they multiply when I'm not looking!)
I have a book on reflexology, but I have not heard of specific reflex points for fibro. I will research that. Do you find it helps with fatigue as well as pain? I am sooooo intrigued! Thanks for the idea!
I have been using acupressure and the reflex points as well as EFT and am never sure what helps what but I generally feel better other then some times when I hurt a lot and have to just watch how I am sitting or whatever. It has been so cold and wet here and that makes it worse so am looking forward to long stretches of sunny and warm weather which I think will help. I have a friend (also a therapist) who did EMDR when she was working and she did it with me so I'd know what it was like before she used it with my clients. It seemed to help and I have quite a trauma history!! THE points for FIbro were acupressure points not foot reflexology although I am using some of those too like sinus and eyes. The sinus seems to help.
Also have been drinking Kefir daily which improves the immune system and a host of other problems. I get the plain because I can't have sugar and sugar messes with the immune system anyhow.
Hi, I havent been a part of the group too long, but it's very helpful when I have the energy to send a message. Oh Boy! can I relate. I am exhausted most of the time and I think pain makes us even more tired. When I do have some energy I forget I have this illness, even after 20 years, overdo and then Im down for a week. If I were employed, I dont what Id do. My heart goes out to anyone who is and has this illness. Youre in my prayers.
The weather really affects the way I feel. Yesterday we had a lot of wind announcing a front was going through and Im down for the count. This is so hard to accept! My life is ruled by the weather! But I hear it is common for people with fibro.
I have a friend here who has it and lupus. She has been seeing a Medical Massage Therapist and has greatly improved. So, Im going to give her a try. Ive never had a massage like it Hurt like hell and she said I would be sore the next day and she didnt lie. But Im going to stick with it and see her once a week. The great thing is she comes to my home. I was always cancelling appts with my other massage therapist cause I didnt have the strength to drive.
Cant say Im very good at it, but stress really puts me under too. When Im catching myself with negative thoughts or worry, I try to give the situation over to God. Right now my daughter may be moving to Hong Kong! Ive cried and stewed of course. To get the job over there she will have tto jump thru many hoops. So If she gets the job, I have accept as what God wants for her. Thank God for Skype!
Well I dont know how much help this was for you. It helps me to reach out and share what's going on. Keep in touch. Sue
I do a lot of energy balancing techniques (look on the internet and you can find acupressure points for them) and other energy work. My energy is better (I think getting off hormone replacement helped too) and drinking Kefir for my immune system. But the pain is worse then in a long time. Not sure why. The weather and emotions (Stress) etc. does make a big difference. I work hard at positive thinking (that will physically change the brain) and it is easier then it was but I just wish the pain would go away. Almost all activities seem to cause it and of course waking up tired after only a few hours sleep doesn't help either. I am glad there are other people who will listen (on here) and not roll their eyes or look bored or change the subject. I have gotten used to most of the symptoms and figure I have to live with them while trying hard to make them go away but I hate it and the limits it puts on my life!
I love my massage therapist, as she knows where my trigger points are and doesn’t beat me up like some. She points out new ones and will even show me what to do to keep them from getting into huge knots. She and her partner mixed up some great oils for pain and stress that feel so good. I try to go once a month, as it can get expensive.
I absolutely love reflexology! I would go about once a month and never thought I would like my feet rubbed cuz I never even had a pedicure because I didn’t want anyone to touch my feet! But I’ll tell you, it’s even better than a massage, especially when you are flaring. When you walk out of there you feel like you’ve had a total body massage. I have a ritual before I go to bed and massage my feet - you do have tender points that need to get rubbed out because it helps with the pain. My dog sits and watches so he can lick the lotion I put on my knee! I love my dog :). If you can find a reflexologist I strongly encourage you to try it.
I believe strongly that stress is my major flare maker. Be it a work issue, or worrying about having to drive in the snow or at night. Yeah, I know - those are really stupid but they do set me off. Some things I can control, some I can’t. But looking back through my journals it is the key.
It appears that all of us worry about things others don’t. I get in a panic if I think I’m going to be late, have to go for a different test, walking into a room where I don’t know anyone, wake up in the middle of the night because I forgot to do something (nothing urgent), worry about everything being perfect for company, worry about what I’m not getting done etc etc etc.
I’ve never had a massage but have been thinking about it for a while, and I love my feet being massaged so I’m going to check out reflexology this week since I’ve had foot problems lately.
Sue, weather seems to affect most of us, We’ve had a fairly bright day today, but I can tell from the aching that rain is moving in again. It’s great that you were able to reach out and we’ll always be here any time you can. It’s nice to receive responses to discussions, it’s an opportunity to share what we’re dealing with, and to support each other.
I am so happy to hear this is working for you! I don't drink kefir, but I do have a plain yogurt every day. That seems to help with digestion and has become a comfort food for me. I wonder if kefir does the same thing for the body as plain yogurt. I will have to look into that - fascinating! Sugar does affect many of us. I have reactive hypoglycemia, which is common with fibro. If I have sugar, I will be sleepy within the hour from the rapid sugar drop.
I am teaching my daughter accupressure points, as I notice she is wearing pain patches along familiar locations. I hope she takes it to heart. I don't want her to turn into a walking mass of trigger points like me!
It is sunny and warm here in the day, but cold and damp every night. I have throw blankets all through the house! :) Since I had nasal surgery, three procedures at once, I notice that trigger points which affect my face and neck are easing up. I am breathing through my nose for the first time in my life....Huzzah!
I will look into EMDR. This is fascinating, and many of us fibros have either trauma or long-term stress histories. You are not alone in this!
I am so thrilled that things are working for you. I love it when I hear that someone has found some help & success in improving their lives!