Wellness

[Mishell5]

Madisson.. I hope you are taking care of yourself during this very difficult and stressful time. Just know that we are here when you get home. Sending positive thoughts your way.

Michelle

[addiegal]

On 8/3/2014 Mishell5 said:

On 8/2/2014 luvmyteddy said:

On 7/30/2014 Mishell5 said:

Does anyone have breast tenderness...pain but not sharp pain? Especially after wearing a bra. This has come and gone for years. I had my mammograms and a ultra sound so I am fine with that. I wonder if it is part of the fibro. If I push in my rib under my left breast it feels tender. I even can feel the ""pain"" in my sleep. Very strange!

Michelle

That can happen depending on where your tender points are. I don't think you have seen a doctor that can diagnose your trigger points. There are 18 tender points and a chart they use to mark them. It would be listed in your file.

I have had this soreness and of coarse I also had fibrocystic breasts and it was very painful when bra removal time came! I get sore ribs only even further down the rib cage. One thing with age the fibrocystic disease gets better!

[apptini]

About 12 years ago when I was working I had such terrible pain, mostly in my back. For 3 years they kept sending me to doctor after doctor after doctor, even the Mayo Clinic. Everyone said it is all in your head. They ran every test in the book, MS, Lupus etc etc. I had to work because I was on my own and could not take two months off work and have NO income for two months like SS wants so you can go on disability. Anyway to get to the point, I worked with a professional at a health food store and after a lot of trial and error to keep me out of pain and fairly flexible so I could walk etc I found the MSM, garlic, fish oil and a few other supplements really really helped. I took 6000mg of MSM a day and that was my saving grace. But when I started having stents put in my body because of my very small arteries I no longer could take MSM, garlic, fish oil etc etc because they are all blood thinners and because I was on Plavix, and still am, those supplements could no longer be taken because I looked like someone beat me up all the time. If you are not on blood thinners you might want to consider taking at least these three items, especially the MSM. I swear by it.

[Mishell5]

On 8/3/2014 addiegal said:

On 8/3/2014 Mishell5 said:

On 8/2/2014 luvmyteddy said:

On 7/30/2014 Mishell5 said:

Does anyone have breast tenderness...pain but not sharp pain? Especially after wearing a bra. This has come and gone for years. I had my mammograms and a ultra sound so I am fine with that. I wonder if it is part of the fibro. If I push in my rib under my left breast it feels tender. I even can feel the "pain" in my sleep. Very strange!

Michelle

That can happen depending on where your tender points are. I don't think you have seen a doctor that can diagnose your trigger points. There are 18 tender points and a chart they use to mark them. It would be listed in your file.

I have had this soreness and of coarse I also had fibrocystic breasts and it was very painful when bra removal time came! I get sore ribs only even further down the rib cage. One thing with age the fibrocystic disease gets better!

addiegal... thanks for answering. After I wear a bra (I try not to in the house), I am so sore. If I touch my rib under my breast it is very tender. I'm glad it is getting better for you.

Michelle

[Mishell5]

On 8/3/2014 apptini said:

About 12 years ago when I was working I had such terrible pain, mostly in my back. For 3 years they kept sending me to doctor after doctor after doctor, even the Mayo Clinic. Everyone said it is all in your head. They ran every test in the book, MS, Lupus etc etc. I had to work because I was on my own and could not take two months off work and have NO income for two months like SS wants so you can go on disability. Anyway to get to the point, I worked with a professional at a health food store and after a lot of trial and error to keep me out of pain and fairly flexible so I could walk etc I found the MSM, garlic, fish oil and a few other supplements really really helped. I took 6000mg of MSM a day and that was my saving grace. But when I started having stents put in my body because of my very small arteries I no longer could take MSM, garlic, fish oil etc etc because they are all blood thinners and because I was on Plavix, and still am, those supplements could no longer be taken because I looked like someone beat me up all the time. If you are not on blood thinners you might want to consider taking at least these three items, especially the MSM. I swear by it.

Thanks for sharing. Everyone is different, and I think anyone taking any supplements should check with their dr. first. Some supplements and meds don't play well together!

Michelle

[Windycity]

Michelle wrote: "Lyrica helped somewhat, but it gave me pain and tightness in my calf muscles (something I didn't have before). Like I need more pain, right?? Anyway, I really appreciate you telling me what works for you. I'll let you know what my dr. says."

I went through a period of terrible muscle pain and cramps ("Charlie horses" from the "old" days!) but I believe it was linked to when I started on a statin drug. I did plead with my PCP and she even suggested to "put a bar of Ivory soap under your top sheet at the bottom of the bed". I thought she had lost it but apparently this came from Reader's Digest or something. I did try it out of desperation and it had no effect. (surprise?!) From there I went to my psychiatrist who is very much a no-nonsense gal. She heard that and practically snorted. She started me on Klonopin for the cramping and insisted that my potassium be checked. It was low and I was started on an Rx supplement which I still take to this day. Low potassium can also leave you with muscle cramps, but it needs to be checked periodically for the level of potassium that's in your system.

I do not have the cramping much anymore, only once in a while and it's a killer. I wake up screaming and think my neighbors must be horrified when I have my windows open. I read that if you push your toes up towards your knee and dig your heel in it would help. I have done this successfully and it's even better if you can find a way to stand up and lean over a little hanging on to the dresser for support for instance, and keep forcing your toes up until the cramp subsides. I used to be so afraid to fall asleep because I was afraid of waking up to these severe episodes. I hope this helps someone. Never give up.

Good luck with your MD's appt next Tuesday, Michelle. holly

[Mishell5]

holly...thanks. I am somewhat apprehensive about tomorrow's appointment because I want her to "hear" me and understand what I am going through. I also get somewhat nervous talking about medication changes. I shouldn't speculate, but we shall see.

I don't get the cramps since I stopped the Lyrica, and they weren't that bad. Just one more thing to deal with along with the other stuff. I am have a very bad time today even walking. My lower back is so stiff. I have disk and stenosis issues. Ugh!

My husband used to get those awful muscle cramps. I even tried the Ivory Soap under the mattress for him too! Now he has neuropathy from past chemo and he gets the muscle pain from that and maybe the Lyrica. He is also on a statin. Oh the joys of all this pain! NOT!

Michelle

[Windycity]

Michelle - hi - is your MD a rheumatologist or general practitioner or ?

I too felt that "no one" was listening to me when I talked about the pain. It was as if she just kept typing away at her tablet and asking questions. My mom was also a patient of this rheumatologist but she had been very kind to her over the years. She told my mom that she had the worst case of arthritis she had ever seen. Problem being is that where does arthritis start/stop and fibro begin? It is very frustrating and I finally discussed it with my psychiatrist.

She happened to be in residency with both rheumatologist and primary care MDs. She volunteered to call them and voila! suddenly I felt validated and that someone was listening to me! The rheum. actually apologized to me.

In any event, if you do bring up Ultram/trazadone, it is not an unknown medication for fibro patients and is widely used around here (Northshore/Chicago). Sometimes it is combined with the Tylenol component and used for headaches and such. I would hope that MDs would have respect for people that research and get involved with their own lives - we have to be our own advocates and often advocates for our loved ones. Best of luck! holly

[Mishell5]

On 8/4/2014 Windycity said:

Michelle - hi - is your MD a rheumatologist or general practitioner or ?

I too felt that "no one" was listening to me when I talked about the pain. It was as if she just kept typing away at her tablet and asking questions. My mom was also a patient of this rheumatologist but she had been very kind to her over the years. She told my mom that she had the worst case of arthritis she had ever seen. Problem being is that where does arthritis start/stop and fibro begin? It is very frustrating and I finally discussed it with my psychiatrist.

She happened to be in residency with both rheumatologist and primary care MDs. She volunteered to call them and voila! suddenly I felt validated and that someone was listening to me! The rheum. actually apologized to me.

In any event, if you do bring up Ultram/trazadone, it is not an unknown medication for fibro patients and is widely used around here (Northshore/Chicago). Sometimes it is combined with the Tylenol component and used for headaches and such. I would hope that MDs would have respect for people that research and get involved with their own lives - we have to be our own advocates and often advocates for our loved ones. Best of luck! holly

Hi Holly! The Dr. I have been dealing with for a few years now is a psychiatrist. She prescribes Prozac for depression and OCD. She also prescribes Klonopin for anxiety. A few years ago, she prescribed Gabapentin because I was having pain from my stenosis. I was not really having fibro symptoms, although on looking back I think it was starting. After a lot of stress, the fibro symptoms were really bad. I was still not diagnosed, but figured it was time to see a rhemotologist. So I was JUST diagnosed with fibromyalgia by the rhuemotolgist. She wanted to put me on Cymbalta but didn't since I was on Prozac. She put me on Lyrica. I decided to stop the Lyrica since I got the leg cramps. I told my psychiatrist and she mentioned Cymbalta but didn't do it since I was on the Lyrica. Too many cooks in the kitchen. So..... I figure that I will see my psychiatrist tomorrow and tell her that I am off the lyrica and see where that takes me. I am going to tell her that my fibro and back problems are just so bad lately. The Klonopin is OK, but it is not great for my anxiety, so I will discuss that too. So that is the story. Right now I am only dealing with the pshychiatrist. If she cannot deal with me, than I will look for another rheumotologist. I wasn't thrilled with the one I just saw.

I really don't think these dr,'s get it because they don't feel it. The fibro pain is just so different. Also, you brought up a great point...where does the arthritis start/stop and the fibro begin, and also where does the spinal pain stop/start which is really arthritis. fit into all of this. And... no one has offered me any pain med. and I cannot take Advil (stomach)

Thanks for sharing with me and I will let you know what happens tomorrow!

I'm so glad you got your dr. to hear you and get help. I never heard of the drug you mentioned but I will research it...Thanks!

Michelle

[Madisson]

Hello Everyone, much thanks to everyone who expressed their feelings and prayed for my family during the recent unexpected loss of my brother. It meant so much to me. We returned Tuesday after getting stuck in Chicago the night before due to thunderstorms. We ended up in cots in the airport. Since they did not cancel the flights until midnight, there wasn't much point in going to a hotel. It was 1:00 am before we got rescheduled. Many people were really upset with the airlines, but lightening and thunderstorms are not their fault. They took very good care of us...even giving us "overnight kits" in case you packed your luggage and had nothing to clean up with the next day. It included soap, body wash, shampoo, conditioner, deodorant, lotion, toothbrush and paste, flossers, lip balm, a shaving kit, and laundry soap. We were all very pleased with the treatment from the airline.

I've been reading through all the posts to catch up. I have learned so much from all of you, because each of us has done her own research and come up with different things. One thing I learned was that I probably have CFS rather than fibromyalgia. My condition came on in one day, and I learned that 80% of CFS sufferers become sick all of a sudden in one day...while that is pretty much unheard of for fibromyalgia. I guess it doesn't matter really for the purpose of this board, as the two conditions are so similar.

Ford, thank you for writing about Dr. Shungu and his research on "methylation oxygen-deprived tissues and cells." I will look at that research. The way you explain it, it certainly makes sense to me. Another researcher who has strong theories on fibro/CFS is Dr. Jacob Teitelbaum. He claims he has overcome fibro/CFS with D-ribose. I used it for awhile, but can't say that I noticed any difference.