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barley - August 4

Is anyone else suffering worse symptoms while we are having this hot weather? I am getting terrible pain in my jaw, neck and shoulders. Everywhere else is hurting more than usual as well, and sleep is almost impossible. Has anyone got any tips for helping with this?


Agavegirl - August 5

Hi Barley. Yes, horrible jaw/ear popping/pressure, neck/shoulders and lower back symptoms right now. I have been using a heating pad, and although it is "heat" it has been helping. I was up all night and finally fell asleep about 5 a.m. this morning. Even though I hate to do it, I am going to take 1/2 of an Ambien tonight since I am really tired from the lack of sleep. I wish I had more answers for us. Hugs to you.


barley - August 5

Hi Agavegirl, thanks for the reply it's nice to hear it's not just me experiencing the effect of the hot weather. Am going to the doctors next week to ask for sleeping pills. Just need to get some sleep to make me more human for my son, don't want to spoil the school hols, he wants to go to the beach but really affected me badly last year. But he means everything to me so if I have to suffer I will do so, he's missed out on enough himself as he was in a wheelchair for five years for a hip condition, so his first walk on the sand is really important. Hope you get some relief soon. Take Care.


Cher0208 - August 5

Yes!! What the hell is that about? Having a major flare. Thought it was something I did. Perhaps it is the weather. I'm in New York. Sleep has been affected as well.

Feel better! If it isn't the heat then it's the cold. Can't catch a break.


January - August 6

I guess we're just those "sensitive people"…….


Agavegirl - August 6

Hi Barley! Yes my friend, you are not alone! Definitely ask for some sleeping pills. I rarely use them, but it is nice to know they are available if necessary. So touching to hear about your son. He sounds like a sweetheart. Sleep is so precious. I wish I could get more of it. I think one the worst symptoms/curses of FM, is the sleep deprivation. When I was in the Corporate World and working till wee hours and traveling for business all the time, I thought it was okay to just get the 6 hours of sleep a night - if that. Always on the move. My main problem is my mind never shuts down. It constantly runs. I wish I could have a Quiet Mind but since I do not, I am attempting to change habits for sleeping. I hope you have a lovely time at the beach and that you get some rest. All the best....hugs.


Agavegirl - August 6

Hi Cher0208! Sounds like all of us in various parts of the country are having flares. Not good! So sorry to hear that you are suffering too. The cold is always good to me. It does not snow here in AZ, but it can get chilly because the desert gets really dry and the temps can get really low. What I would not do for a lovely crisp evening right now! Hope you are feeling better and hugs coming your way!


Agavegirl - August 6

Dear January - First of all, I want to say THANK YOU for all of your wonderful posts on this site. I read every one of them and you have helped me so much. When you write/speak, I feel as if you are speaking for me and know EXACTLY what I am going through. Your insightful information on FM is really fantastic. I am trying to go Gluten free too, plus stay away from sugar and Diet soda - anything with Aspartame in it. And because of you, I went out and purchased the book on "The Highly Sensitive Person." In fact while I was at the hair salon today, I was reading it and was telling my stylist about it. WOW - this is me and then some. In some cases, it is so scary to see these things in writing because they hit the nail on the head. Especially about the sixth sense/intuition/sensitivities/reading people's moods, being deeply moved by the arts/music, being conscientious, etc. etc. I can be very extroverted and social, but also need to recharge and be by myself when necessary. So please know that I thank you so much for being on this site and hope you feel better soon! Big hugs and ALL THE BEST to you my friend. :)


barley - August 6

Hi Cher, I think it is definitely the weather causing my flare up, which is getting worse. I am in the UK but have been getting very hot days. Get bad flare ups in the cold as well, wish it would stay spring all year round.


January - August 7

Agavegirl - I just answered a couple of your other posts - and checked in here. I can't thank you enough for your kind words. To know that I have helped someone else is what gives my life and my own pain meaning. (I have a feeling you know what I mean, as you just mentioned on another post you wanted to do something to help!) It's what I do to make sense out of the pain I've been through… to turn a rotten situation into something positive. And this goes a lot deeper than just fibro.

Fibro is so isolating and no one really understands it unless they have it. So this little online community is my "hometown" in a way, where I've made some wonderful friends - who don't judge me, or get panicky about my situation and their own mortality, or offended if I hurt and have to cancel! Etc.! You, FRIEND, made my heart feel good today.

Isn't The HSP book wonderful!! Glad you liked it. Yes, I think it fits a LOT of us. We're SO conscientious and hard working we knock ourselves out! And we're so nice and sensitive about other people's feelings, we just keep going til we nearly kill ourselves. "No" is not in our vocabulary and it should be, along with a few other choice words maybe. : )

I just read something amazing. If you've ever experienced adrenal fatigue, one of the odd things about adrenal fatigue is….it increases your abilities for empathy and sensitive intuition, like a 6th sense. If you have adrenal fatigue as a youngster (under 18) and then it gets better - you NEVER lose your especially powerful intuition. However, if you first experience adrenal fatigue, say, in your 30s - while you are in it, you have increased intuition, but when the adrenal fatigue is treated and healed, that intuition goes away!! I thought that was quite amazing. I think this has implications that relate to child abuse - which is something that shaped me - I don't know if it relates to other people here...

Barley - since this is your post, I wanted to mention that I have had great luck using melatonin as a sleeping aid. I read that in tests it worked as well as prescriptions and sometimes better (I vote better). I use it every night, and take a small dose of a prescription to go to sleep. By adding the melatonin, I have managed to keep my dose of sleeping meds low. You can get time release or sublingual (sometimes I use one of each!). I don't know if it's in the UK, but the brand I like the best is Source Naturals. Melatonin is a natural hormone - but you never want to take too much of any hormone, so google it and read about it. I also got a great tip that works - and that is to eat a little carbohydrate snack at night before bed. It seems to work.

And YES, this weather has been horrible. Seems we've been complaining since last winter about increased pain. Maybe we're the canaries in the coal mine for global temperature change! I have horrendous pain when the barometric pressure changes. I don't know if it's the lows or the highs that get me - but one of them (or both?) does. Along with humidity and sensitivity to heat and cold. ARGGH!

I was at a little party today and someone I barely know came over to give me a hug hello. I meant to say "Hi! Good to see you!" and instead I yelled "AAOOWW!" Awkward… My bad shoulder seemed fine, but he just caught it the wrong way. I didn't want to launch into my "Well, I have fibromyalgia" monologue…. He just smiled and kept on moving. I stood there wondering if he heard me scream, or... maybe not... another "Fibro Moment." LOL


Agavegirl - August 8

January - I really meant it when I said THANK YOU, so THANK YOU AGAIN!!!! Yes, we need to keep up-to-date on everything, because if we don't, then no one will! I have read many articles about keeping a positive frame of mind, because our Fibro brains really need to stay focused and upbeat, otherwise, we spiral further down.

Yes, I know what you mean about how wonderful it is to have this outlet for all of us to share and vent. Some of my well intentioned friend's have NO IDEA what we go through. It is amazing that because they see no PHYSICAL differences, that they think we look great and all is dandy. No one knows about the private suffering - physically and mentally that we go through. I very rarely share anything with them anymore. It just is not worth it. I feel that although I am close to them, I am still being judged.

"No" has become part of my vocabulary recently and actually it is very empowering. Too many times we give in and then regret it later.

Your comments on Adrenal Fatigue are amazing...thanks for sharing. Makes total sense to me. I really hope that you were not abused as a child. If so, I admire your strength, courage and wisdom. You are a special person and have a very powerful mind and soul. xoxoxo to you.

Barley - As January has posted, Melatonin has also worked wonders for me. So give it a try and let us know if you get any relief from it. I also use aromatherapy oils at night to breath in and they have really helped clear my mind and sleep more soundly. hugs to you.


January - August 10

Agavegirl - I saw a decent Dr. Oz show tonight where he actually talked about some of the issues we have with doctors, like being dismissed, treated as idiots, or not listened to. On this show, I learned about a profession called Nurse Advocate. This is a person who goes with a patient to medical appointments and helps navigate the system, ask the appropriate questions etc. and helps explain things in detail to the patient.

If you are up to it, you can get a technical RN in 2 years (that's a lower status than a BSN and very hard stressful physical work) but in 2 years, you could also get a Masters in Social Work. That's a very versatile degree with good licensing and a lot of clout. You can work in counseling and/or in medical settings. In fact you could even start your own business (MSWs often work alone) as a fibromyalgia advocate. Lots of us need help navigating systems to do with medical, legal, disability, insurance, family understanding, etc., and an MSW could do all that, if you took the right courses. The coursework would probably be a little less physically stressful and draining than the RN work. Glad you are researching options - you sound like you would be wonderful in some kind of field like this.

And yes, I was a victim of violent long-term child abuse on many levels. It made me who I am, and I turned it into something good. From the outside, we looked like a lovely family, so no one ever suspected... except our family doctor, who, in front of me, once told my mother to stop it. But back then, nobody interfered in private family business. My mother continued to do everything in her power to ruin me and every good thing in my life for as long as she lived - which was a long time! She was a scary, angry, violent person and from the time I was little, I was the only one who ever stood up to her.

I have to say that I applaud Dr. Phil for bringing a little of this problem out into the open; he sometimes is very confrontive with parents who are abusing their kids. The most healing thing to do is air it out - it helps me to talk, and it helps others to hear my stories if they are going through the same thing, especially if it's still a "secret." On the other hand, some people get angry - and those are probably people who feel guilty about something they've done. I am working on a book about my experience, but it's hard to write, I am still piecing things together, so your words were encouragement to me.

Thank you again for those very kind words. They meant more than you know. I am so pleased when I can have some positive effect. It makes life worthwhile for me and helps to right the wrongs that were done.

And now…. if I can just get this great big head out the door….. : )



Agavegirl - August 10

January - All I can say, is I am SO SORRY for your past. You are an amazing person, and you must write "the book." I have so much I would like to say to you, but I would be writing for days. :) Wish we could meet in person someday. I have many books in mind as well, and feel that talking and sharing are very important...when we share and speak about some of our private issues, we may be changing a life for someone else. And not to mention, helping us make sense of things, because when we share, then we heal too. Keeping things in can only harm us more. I think this is one of my biggest frustrations with having Fibro. I want to share what it is with others, and when they do not have it, they look at you as if you are from Mars. That is why it is so wonderful to have this site to vent and express our thoughts and feelings.

THANK YOU too for the information on the career options. Actually, I go with my parent's/in-laws and friends to their Dr. appointments. I ask so many questions that they would never think of, so the Patient Advocate role really resonates with me. I can tell in an instant when a Dr. is "going to be a problem." :) They either hate me or love me because when we come packed with knowledge and demand certain tests, they are either incredibly threatened or embrace the fact that we are in tune with our bodies. Through lots of trial and error, I know have a great stable of doctors who get it.

Once again my friend, you are making an enormous impact on the World and are fantastic. So keep being you!

Hugs and love to you.



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