I didn't know you are doing so hard you are already sitting in a wheel chair? I'm really sorry for that (esp. as such a chair seems to be next for me in autumn ...). But I'm happy to see you are still playing something and even more – going out for it with your family! That sounds so great!
For me it means a lot to know you because you never seem to give up! This is something that lets me go on step by step the last years since the diagnose, though it seems getting worse more and more. For some reason my fibro seems to be much worse than "usual" my docs say. Even that worse I can't stay in a hospital for "psychiatry and psychosomatics" (that's how fibromyalgia is seen and classfied in german health system, but about 90% of the german docs still don't "believe" this pain is real neither the fibromyalgia) so they told me, it's better to leave and go home. That's so scary and weird! My docs are helpless and perplexed, they have no idea, how thay should help me. A hospital is not able to help, too. In the meantime all morphine and morphine like pain killers can't be used in my case anymore, because the last time I tried it (because "my helping medicine" is limited for ma at the moment and it's expensive, very expensive, see below) I got dyspneas on the lightest one in a low dose.
Now I'm fighting against my health insurance at the court as they don't want to pay for the my cannabis, which is the only thing, that is able to take away pain, helping me getting sleep and relaxing muscles. Without that I can't stand the pain anymore... Any other medicine/pain killer is either not working in a acceptable way or making me more sick.
Well at least weather is on my side at the moment.
I hope you have found some ways to cope better with your fibro!
P.S.: If you are not longer around in this wiki regulary, I'd suggest keeping contact via eMail. For this reason (but also on other stuff ;) ) you can send me a mail instead of an answer here to lady(at)ladyanima.de.
I also read your last message on my wall, but after I saw you are doing fine and the weird hurricane did not do you any arm, I was relieved and concentrated back on the daily stuff of real life, you know. I'm a bad "Letter Friend" because it can be really depletive to write long stuff in foreign language ;)
I'll make it short. My beloved man is still doing fine, only typical age stuff. My cats are all fine (again, one had a bad blatter infection a few weeks ago) – for luck. Me, well, there had been a suspicion of breast cancer, but it's all ok in this case. Too much stress is marking weird symptoms (not pregnant, no birth, no babies around, but lactation...). A new MRT showed up little inflammations at my spine, which opened the next pandora box. The box has to rattle now until end of march for the first appointment I could get at the new doc. Maybe it's psoriasis arthritis. In the meanwhie I'm fighting hard for my rights and try to relax body & soul (that's not that easy as a perfectionist :).
I hope you are ok or in other words that your health isn't stressing you too much!
I'll stop here, tired, the cold out there is a energy vampire!
I really hope your family – especially your brother – are fine now!
I'm not able to travel for years, but my family comes around once or twice the year, this time they brought my little brother (he's already 26), which made my hollidays even better. Fuck the pain (sorry for this word), if I have the family around, the pain loses importance. Okay, I should NOT kiss my nephews, if they are coughing – maybe I'll learn next time.
I'll give you an update if it's PSA, but I'll not know until April '17, because this kind of doctor are very rare...
Other stuff, maybe it might give you help, too. I recently read a study about D-Ribose helping on tired muscles because of Fibromyalgia and stuff. D-Ribose is a kind of sugar with almost no calories and it is the most direct energy giving stuff for muscles. I'm using it for about 2 weeks now and have to say, it helps my legs a lot! Usually they are some kind of "restless" and painful, but it's really better by taking D-Ribose. This kind of sugar is used for years in high performance athletics. Maybe it also might help you?
Have a great New Year with lots of inner satisfaction!
I have been drinking two 8 ounce glasses of orange juice every day. My leg cramps are better right now. I am also keeping track of my hydration, mainly water, in a planner that I got for 2017.
My brother is home and doing much better, thank you! My husband usually calls him while driving to work as the phone goes through the car radio so it is considered hands free calling and safe for drivers.
My brother is 20 years older than I am and we were the only two children our parents had. My son turns 30 this year.......Where has the time gone?
Does your family live far from you? Most of my family lives in Northeastern Ohio area and that is about 1,200 miles from me.......A good two day car trip, spending one night on the road. About 22 - 24 hours of actual driving to get there.
Please let me know when you see this new doctor. I wish you lots of pain-free days!!!
I really hope you can profite of it like I do. It's not doing wonders, but it give relief. And I must say, I never thought of asking you, if you are drinking enough water. I assumed, that's normal for everyone like it is for me. I usually drink at least 2 liters the day, because of my kidneys would start a war if it would be less :) Orange juice makes my stomache fight, which is slowly getting better now finally – no more nausea the whole day and only every now and then a hard nausea attack with running to the bathroom and stuff.
Thanks god he's using a hands free! It's really dangerous without! But that's a great way to keep in contact and to use the time driving more effective! I'm glad to hear your brother is doing better!
I remember like yesterday my little "baby" brother was born, he turns 27 this year, also my little sister, who becomes 20 in summer. But last three and a half years are worst. That time I passed my final university exams, already getting tired more and more, but recalled I had so much energy, I was able to do so much things – now is completely different, it seems like another ones life... Okay, I must confess, I'm very down at the moment. Too much stress on fighting for my rights and further not even one good day for more than a month. Every morning is a torture... Sorry, didn't wanted to moan around..
Yeah, my family lives ~600 km (~372 miles) far away, which is half a day of driving, so not that far than you family. My little brother and sister live both seperatly ~1,000 km (~621 miles) in a neighbour country. My mother visits me regulary, sometimes she brings with my step father and even more "some times" my little brother comes around. Mommy calls herself "happy houswife", so she has enough time to come around. But these visits are rare, my mom 2–3 times a year, my brother came around this christmas after not seeing him for two years. But he's studying and has his own life, he has to learn to handle, and I'm completely fine with that.
My desease limit my "action radius" too much. I haven't been at home for 4 or 5 years, because I can't sit long enough. More than one hour in the car is almost impossible. But I fought for that hour so I can visit my darlings familiy, which is also mine, even without sharing the name and the blood. I'm really impressed you can drive so far! Take it as a good sign, could be worse ;)
I truly hope you can have some relief from pain. Pain just takes everything out of you.
I can't drive... Haven't been able to drive in more than 12 years because of the double vision from my neurological disease. This March will be two years since we travelled by car to see my family. In March of 2016 we only travelled to vacation in the mountains which takes us about 12 hours each way. The trip really wiped me out. I do OK, usually, pain wise while riding in the car, but unfamiliar beds in the hotels can be difficult. I take my own pillows which helps. I also take along a heating pad. Actually, for the past few months, I sit every little while in my recliner chair at home and put the heating pad on my back. It helps. But this past November I just wasn't feeling well enough to travel. My husband has more time off work in March, he is already talking about how much time off he must take as vacation time and he is already hinting about traveling. I don't even want to hear it. March will be our 38th wedding anniversary.
I got the D-RIBOSE tablets ( chewable tablets) on Friday while my husband was driving me around for us to do errands and shop. The vitamin store didn't have them in my preferred brand so I got another brand that is also gluten-free. Chewed up two today with supper. They tasted good, thankfully. A dose is 1 - 3 tablet's once a day.
I know, time certainly hasn't been good to our health. Sometimes it is hard to remember when I could drive or walk without my cane or my walker. Or when I could go outside without having someone with me in case I fall down.
If you enjoy music, it has been shown that listening to music helps with pain levels and feeling more positive.
Layla, thank you for thinking of me. We are fine here in Central Florida. Some of our friends living near us did lose power for awhile. One had some damage to their fence. Others near the coast really took a beating. We were very blessed that the storm jogged a bit to the east and it went through an eye wall replacement cycle and weakened slightly before it reached our area.
A very unpredictable storm. My niece in Virginia wasn't to have had the storm come to her area yet it did and she has a large tree limb down on the back of her house.
I hope you are doing well. About one month after eliminating these other foods that seem to cause inflammation in my body I went to Disney's Magic Kingdom on their 45th birthday, October 1st. I took my walker, moving slowly, but walking. That day I walked 5.31 miles. I hadn't been able to do that in several years.
I want to tell you that I do not know how much longer that I will be able to continue playing these RunAwayPlay games. Since August 30th, support finally got me into Starlight and Splash on the 26th of September on my Android tablet. This was during ongoing events in each game. Neither game is performing the way it should. I have contacted support and the devs repeatedly. Still can't access Flutter: Butterfly on my tablet. No other games/apps on my tablet have had any problems after the Android Nougat 7.0 O.S. update. I should have stopped playing them but guess I am a glutton for punishment. I get so irritated with the games not working that my Blood Pressure goes way up and I get a scary bad headache.
The one thing that still bothers me the most is that they do NOT pay attention to detail and that really affects their customer service. I had clearly stated that I could not access my games on my tablet...that it would go to a dark grayish screen and no further PLUS I gave them my IDs for the three games. The first response from the devs when support transferred me over to them was which of these game IDs are yours...they listed several of which three should belong to my tablet, but two of the tablet IDs were not correct, they had transposed some numbers. AND then he said you need to log out of your games, then log back into them...they had my original email as that is what he replied to me from. Well, that's not possible since I don't sign in with Facebook BUT even if I did, I couldn't have since there was no getting into my games.
Then yesterday I get a form email. Have your problems been resolved.......*sarcasm here*...of course they have, that's why I keep sending you emails about the issues that are ongoing!!!!!!! If we don't hear back from you by a certain time we will close the Support Ticket. I replied that there were ongoing issues still.
But, I want to tell that I have enjoyed our online friendship/communications very much. And appreciate all of the hard work you put into the forum(s).
I hope that your guy is doing well...mine is now after the diagnosis in May of yet another new disease that he will have for life. Please take care of yourself. Hug your kitties for me!
I don't know, if you know about the german latest science research. Finally I found something about that in english, but it's the medical version: Small fibre pathology in patients with fibromyalgia syndrome But the summary is giving an understandable overview, I think. Maybe it can be a help for you, too.
I'm at a really despaired point at the moment. It's hard to accept it will be my companion for next 30, 40, 50 years, depending on how long I'll live – that's making my soul suffer even more than the pain itself, which can be turned off for a while using opioids in worst cases.
Sorry for answering that late. My Fibro has become very bad and all my life and time is needed to find a way to live with it... The docs are "at the end of their Latin" now. My bad days (pain on a 10 points scale at a 7 or higher) are at about 70% of the time. No food adjustment helped, no medicine, nor any other kind of therapy... All I can do, is taking Opioids and Cannabis (which is actually only legal with a special permit in germany...). Cannabis is really helpful for me. It's releaving me from pain, relaxing muscles and giving me a better sleep. Press thumbs for my petition for the special permit, please. I don't know how it is in Florida, but if you have the possibility, try it out! In a low dose, it can give you the good feelig in body without the intoxication/euphoria. For me it even can push away the Fibrofog in the brain.
On the study in short words: It seems Fibro patients have less nerves (so called "small fibres") for temperature, which must have been destroyed somehow. That seems to be the reason for the pain and especially for the sensibility for temperature combined pain. That's making Fibro a "neurological pain".
Give the link to your doc to spread the news. Maybe someday, someone, somewhere will find something, that may help or even heal.
How are you doing the last weeks? I often think of you and always say, that I'd love to emigrate to Florida, because I know someone (you) there :)
I think of you often too. Are they certain that you have just Fibromyalgia? Have they tested you for MS?
Fortunately, I have seen very positive results to the Fibromyalgia pain when I eliminate certain foods from my diet. I say when, because right now I have no will power to be able to do that.
I also know for certain from past history that needing to take strong pain medicine for quite awhile actually causes your body to feel more pain. It is a circular thing, I can't remember what the doctor called it.
I also know from personal experience that gentle walking outside in good temperatures getting some natural vitamin D from the sun does help too with pain. However, because of my other neurological disease, still unnamed by doctors but I think it is MS, which causes my poor balance I am not allowed to go outside alone so I am pretty much confined to indoors except one or two days a week when the husband is off work and then we are usually so busy doing errands that I don't get much chance to just walk.
Oh my dear, Florida is so brutally hot and humid. I had actually gone more than a month without going to Epcot on a Saturday with the husband to listen to our friends play in their musical group and visit with other non-musician friends who also enjoy listening to the music. I get a wheelchair to sit in and my husband pushes me. We went yesterday as it was overcast and only in the mid to upper 80s (F). It was supposed to have rained which would put the music inside but that didn't happen. I did think of you though as we went to the Germany country area at Epcot and there was a new group of musicians. One on guitar/vocals, one on accordion, and one lady who apparently is famous for her yodeling. We enjoyed watching them.
sorry for letting you wait. I read the message already that day you wrote it, but it scared me so I only "ran" away. Your speculation on MS as my sickness mourned inside and kept on scaring. As I'm at a reduction of my pills, I'm suffering some withdrawals like overwhelming anxienty on small concerns. But finally last week I asked my doc and she told me, it's no MS, nonthing is pointing that way and my symptoms are very different to the ones of the MS patients my doc is treating. I'm fine with that answer especially as my MRT of June '16 didn't show any center of inflammations.
I know well about the pain medications circles of pain. This is true for all specific pain killers, but the influence of psychopharmaka is working in another way. Common pain killers I never took long enough to experience the pain by pain killer phenomenons, which usually come up as headache pain.
I tried any kind of diet the last year, but absolutely nothing changed anything on my fibro symptoms. But at least I know more about my gastrointersternal tract, in better words I know, which stuff is less good for it than others :)
The Vitamin D stuff is important, I know, because I need to supplement Vitamin D since two and a half year. There hadn't been enough left on the first blood test to be able to get correctly measured. Light walkings are fine and I try to get on them, whenever I can. If there weren't the stairs to the third floor with my flat and the blockade of my sacroiliac joint. As my sacroiliac joint suffered even more with every step, I need to avoid the stairs until it's getting good enough to not to hurt to the morning after.
You know that kind of music is only representing a part of Germany? ;) It's the state I was born at (where the Brezn came from! ;). It's called Bavaria ("Bayern"). I guess there are already starting the first "Oktoberfest" events in the USA?
At least my soul is getting better ;) So good, other people recognize it. Last week the nurse, which took my blood, asked me if had been away for holidays. I wasn't but must look like. That's a good sign for me ;)
So glad to hear back from you and I am so very sorry if I scared you with my questions about testing for MS!!!
Well, I gathered my determination and on Sunday August 28 I removed all most all foods again from my diet. The gluten-free foods that I was eating had started causing me the same digestive system problems that gluten did. So I pretty much figured out it was corn. Plus I was getting rashes like hives from the foods too. So I started back on my diet the allergist put me on in 2001 when I really had to clear out my system from horrible food allergies.
Probably the hardest giving up was Coca-Cola and caffeine but Coke has high fructose corn syrup. Layla, my pain had gotten so bad again that I was rubbing Vicks Vapor rub on my left arm to ease the pain.
Amazingly again my body responded so quickly to what I was no longer eating. We had a brush of the hurricane last Thursday with very severe storms and tornadoes close to us. My joints hurt and a few of my bones did BUT no headache! Amazing.
I even took a cooler of my foods that travel easily with me to Epcot on Saturday to listen to music and see some friends. I was able to stay longer than I had in a long time.
Please try to do an internet search for foods that cause inflammation in our body, especially if we are more sensitive as we FMS patients seem to be. Also there are a few foods that help fight inflammation in our body. My pain levels are way down already and thankfully my digestive system is happier again. And my sinuses aren't swollen and painful. It is worth it to get the bad foods out of the system.
Now, another thing that happened this week that normally would have had me so stressed out that I would be climbing the walls is none of the three RunAwayPlay games work anymore on my tablet since it downloaded the latest Android System update. I contacted them on August 30th as soon as this happened. I have only had the initial response from them. I put a more detailed post on Splash wiki under Bulan Event if you want to read it. I am undecided if I will continue playing the butterflies and fish on my phone or not. I do know that I will never spend another penny on an online game again as I had put almost $500.00 US, over the 2 1/2+ years that I have played, into their company trying to be supportive of a small business and their educational aspect to the games. BUT to not be prepared for this huge Android System update is totally unacceptable.
Thanks. He was discharged just before 10 pm on Thursday. Crazy time but our son had called in sick to work again with his low blood sugar issues so he was available to go get his father. It's been almost eleven years now since I have driven and it doesn't get any easier. On Wednesday I was going between a pity party and beating myself up because of not being able to drive to be with husband at hospital and worried that I would need to call an ambulance if my son's blood sugar dropped any lower. I felt absolutely worthless.
Marcia. A way to send gifts without paying FBs is to increase ur gifters. The Sachem and the Mountain Snow Apollo add 5 gifting per each butterfly. I have 4 Sachem and 2 MS Apollos. I start with the first free ones...give one to the smallest game and then 4 others. Choose a Sachem and use it's ability to reset the gift counter. Again...give the first gift to the smallest game and then move up to the next set of friends and then repeat. I forget which friend system u r using. If it is FB or G+ let me know and we can be friends.
Twylla... I am using Google+ because I can't do Facebook. I only have two friends on my phone with four gifting resetters. On my tablet I have four friends with three gift resetters. Please do the inviting as I don't do well with it. My name is Marcia Taylor on each device. My phone uses a handicapped parking sign covered in snow for my profile picture. My tablet uses a picture of 1960s style flowers. If you need my emails, I can't remember, let me know. If you have room invite both. If only room for one please invite my phone.
PS...I just checked and I have both devices as a member of the Google+ Flutter Butterfly Sanctuary Community. I have tried searching for you but can't seem to find you. Let me know if you need more info.
I sent an invite too once you ended up in my circle. Sometimes it takes two or three days. You may have to connect then disconnect, then repeat a couple times through Google+. The strange thing is my DIL's picture in my friends' list is a picture of a train which she used for Google+. But when the gift arrives from her in my forest it is her recent Facebook picture. And I am not connected to any Facebook. Weird, but as long as we can gift that's all that matters.
Currently at 13,790. My picture is the handicapped parking sign covered in snow. You might have to disconnect then connect a couple times with Google+. Like I said before my DIL'S picture in my friends list is a train. Yet when her gift arrives in my forest it is whatever her current Facebook picture is. Yet we invited through Google+ since I can't do Facebook.
Hope the gifts help. I think you squeaked in today to get five gifts from me.
I can test it, but I'd offer you to create a Facebook account without personal informations for you, which you can use once to unlock the amigo set and then disconnect from FB respectively I'll close it down as soon as you are done with it. That would mean, you don't lose any control or need to remember anything for more than a few hours, but you can unlock the set and get the butterflies the way I descibed on the Event Thread. What do you think about that option? That wouldn't give you friends for the future, but once unlocked, the flowers can be used, I'm pretty sure, as my testing game isn't connected to any social stuff and still able to use them.
Thanks, Layla. Appreciate very much your efforts. I talked with my daughter-in-law and I think she is willing to try the Google+ on her game and help me add it on my games. If that doesn't pan out I will get back to you. We both thought it wise to wait until event ended in case of any glitches.
On another note... I wrote support about a mission that I tried the Pale Owl on and it wasn't accepted. I couldn't remember if event butterflies could be used, or not. Then when I had their ear I mentioned about issues with pollen flowers not trying closed and timer counting down beneath flowers. She said they are aware and devs are working on it. I would almost bet it is tied in with this event centering around the pollen flowers.
Also, she kindly recommended this site for info on missions, etc. Thought you would appreciate hearing that.
I have my first Amigo (Pipeline) in the incubator on my tablet.
My daughter-in-law helped us get Google+ set up on our devices. None of our devices show any friends yet even though we invited each other. I found Epens' posts about it so we made sure we were set up as public. We will give it a couple of days and then contact ??? to figure out why we don't show up as friends yet.
I had the three Amigo flowers from the deceptively worded Bargain Beetle deal. I had to contact Tim at Run away play about it when Mobage couldn't help me. He kindly refunded my FBs and told me he had left the flowers for me when the day came that I could connect to the new system for friends whenever they had it working.
Now to buy some for phone. My DIL doesn't have any of the flowers so hopefully we show up as friends and I can gift her one.
I posted a long post over in the topic that was started in the General Discussion section, I think. I mentioned a lot of the foods that I have eliminated that have helped me. AND, YES, it truly did help me. Our doctor, whom my husband and I love to pieces, and is the son of my first doctor in Florida when I was so little, doesn't believe that foods can cause me the pain, and eliminating these food can give me so much relief, but I know it worked for me.
These are going to sound strange but please google and read as you are able to and do more research on these things: FIBRO DIET, NO MSG, Dogtor J (that's not a typo) The G.A.R.D Diet or The G.A.R.D. which is part of the site that Dogtor J has online. There are other's blogs and things that post about the relief they got in changing their diets. Try also googling: Inflammation Diet, Also, I read a lot of things and watched a bunch of videos this summer when I eliminated more foods from my diet (see my LONG post) by a Functional Neurologist in the Carolinas named
One of the biggest ones for me with the fibro is the dairy. I have always loved milk, loved ice cream, etc. AFter reading the stuff a few years ago by Dogtor J, the milk one really got to me when he talked about how it is used to make glue. And, the coating it leaves in our intestines that prevent us from absorbing nutrients. I was a believer because if you have ever had someone leave out a glass of milk that they drank slowly and then did not rinse out and you see the film that is in the glass and it takes a good soaking to get that clean. Also, when he talks about soy. Calcium (in milk products) and soy are two foods that many medications caution you not to consume within a certain amout of time, like four hours in either direction of taking that medication BECAUSE THOSE FOODS BLOCK THE ABSORPTION OF THE MEDICATION.
Some web sites you can tell instantly are junk, but when you keep seeing the same thing on various web sites, you figure there must be something to that information.
Doctors are not infallible and cannot be an expert in every thing. I believe we have to have good medical care but we must also be our own advocate to some degree when it comes to our bodies and our health. If eliminating some foods can make a positive change in our lives, that shouldn't be harmful. My doctor agreed that it wouldn't hurt me but he didn't believe it would help or that I would be able to stick to it (ON THAT HE WAS CORRECT). He just glosses over the improvement when I insist it was from dietary changes...he owes it to cyclical nature of FIBRO. He can't give me an answer as to why my asthma is virtually 100% improved/non-existent now in my life. He also wouldn't believe me when our son was young that foods with dyes in them affected his behavior. Now most in the medical community do believe that dyes can affect some people adversely. So I guess I have always been one to observe, take note of any changes good or bad, etc when there was a need for it.
I wish you lots of luck and success. Keep notes on what foods/reactions you might have. I had to do a food diary back in 2001 when I had the severe food allergies that were fianlly figured out to be to preservatives. I had to write down everything that went into my mouth, including water, and the time. So, in 2010 when I began the Inflammation Diet I also kept a notebook with exactly what I ate and when and any good reactions or bad. Because we think we will not forget and that we will remember exactly but we don't, so write it down.