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Re: Fibromyalgia Sufferers...A Place to Meet

The only pam I found that I could take during the day for fibro and mainly anxiety is oxazepam. It is the only one that doesn't knock me out. I take half a lorazepam at night to sleep. I have tried everything over the last 10 years and nothing helped for fibro. I also take pain pills. I use to belong to the old Fibro Thread from a few years ago.

I am in bed 23/7 and it is a pain. It all started with Lyme Disease and then progressed to everything else imaginable. CFS, nerve damage, PTS, Epstein Barr, fibro, headaches, herniated disks, auto immune disease, mold spores, diseased colon, you name it, I have it.

I wish I had someone to help me but I don't. Family, friends and neighbors have all disappeared over the years. I would say if I had to pick just one thing it would be the lack of no energy and no desire to eat. No one would find me for weeks which is sad but I have my pets and it's the only reason I am still fighting to eat.

I have a dr's apt I just made for today but it never helps. I will have to take a taxi and if I could go in my pajamas I would and have before. Whoever thought something like this could happen to someone fairly young and there's no cure.

Good luck to all and if you have someone consider yourself very fortunate.

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Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

On 7/28/2014 Madisson said:

Mishell5, Hi....Up early (practically in the middle of the night) as I could not sleep. Too much on my mind, I guess. How are you doing? Sorry you are having such difficulty finding the right antianxiety drug for yourself. Have you ever tried the diazepam? Would your doctor let you try it? I like that one, as besides antianxiety, it is also a muscle relaxant...and that is where we feel most of our pain.

I had to giggle when I read your comment about deciding you will just have to settle for big breasts as you need to stay on prozac. I know what you are saying. A lot of medication choices are just choosing between the lesser of two evils.

I know what you are saying about men not seeing the mess and clutter too. Usually the house appears neat...but I know where the clutter is! We built this house 4 years ago when we moved from St. Louis (we retired). We never got totally unpacked, and I've been trying to complete that task and sort out what to keep and what to give away. What a job! Oh, well...it's T minus 1 l/2 days and counting before the guests start arriving for their 6 day visit. I'm getting there!

So, it sounds like you live on Long Island...is that correct? My nephew and his new wife live in Queens. Her parents live on Long Island. They keep asking us to come for a visit, but so far we haven't had time. There is always something going on with one of our daughters or grandchildren here in SoCal. We're hoping that next summer we will be able to make it to NYC. I've been to meetings there, but have never been able to do the whole NYC touristy thing. That would be fun.

Hope you have a great day! ~~ Madisson

Hi Madisson..sorry you couldn't get a good night's sleep. We had some thunder here that woke me. Not too bad but loud enough. The weather is still very tropical here, but I like that. Yes, we live on Long Island. I have lived here since I was 4 (I lived in Forest Hills before that), so basically I have been here my whole life. Same for my husband.

My daughter worked in the City about 5 years ago. She was an intern for Conan O' Brien his last year here in NY, and then for Jimmy Fallon when he took over. So we would get into the City to see the show and get dinner, etc. So we did the 30 Rock thing and all that. My grandmother used to bring me to the City all the time when I was a kid. I have never been to the Statue of Liberty..LOL.. The City is just getting so crowded with visitors that you can hardly move! But it is so electric and fun! Of course we were in the City a lot for Sloan...but that doesn't count.

I am anxious about seeing my Dr. next week. She kind of rushes me and I really, really need for her to hear me about helping me with my fibro issues. I am going to bring up the diazapam. If there is a muscle relaxing component to it that sounds like it might be worth a try. I also want to bring up the gabapentin, but I am really afraid of the side effects. Advil is just going to tear up my stomach.

So you lived in St. Louis and moved to Ca. That sounds fantastic. I always think about where we would go if we got to do that. Right now things are bumpy with my husband out of work and just concentrating on feeling great! I totally understand the never getting to fully unpack. It's great that your family is in So Cal too. So beautiful there, and great weather. I kind of dread the fall and winter. I NEED my sun!

Hang in there... I don't know how you are having guests. I just cannot do it.

I read about you cleaning before the cleaning lady. YUP! My mom and I always joke about that. It takes about a day to get ready. And men just don't get that.

The sun is trying to get out so maybe I will get some pool time in. Enjoy your day and don't do too much!

Michelle

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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/26/2014 sneef said:
On 7/25/2014 Ltdow said:

northcoast and slainte.....I have increased sensitivity to noise also......didn't realize why until your posts, thank you so much.

I am also having headaches, most all the time now....neurologist calls them migraines (but they don't seem that bad to me) and that Fibro causes them. Anyone else have these? Getting Very sensitive to light also. Sometimes I think doctors are blaming Fibro for everything they can't figure out.

So enjoy reading all your posts and learning from everyone. Wish you all days without pain and greater understanding from your family and friends.

I definitely experience sensitivity to noise and light. When I come home from work I need around 30 minutes of quiet time and nothing stimulating me. There are times I get noise overload and then my anxiety kicks in. I suffered with headaches almost daily for years, just learned to live with it until about 6 months a go I had a full migraine attack. I was so bad that I laid myself on the kitchen floor and wedged my head under my kitchen cabinets as it felt like my head was going to blow off and I had taken 6 migraine meds with no relief, yes I know it was more then the recommended dose, but there was no way I was going to call the ambulance, so I waited until my husband came home and took me to the clinic, where they placed an IV and pumped me full of medications after 6 hours finally the migraine subsided, now I instantly take a migraine med when the following symptoms start, numbing on my lips, like sunrays in my eyes, numbness on the side of my left hand. The big aura.

That is just so horrible about your migraines. I can get some bad headaches, but nothing like that. I have gotten that aura thing. I didn't know what it was at the time and it totally freaked me out. Once the dr.told me what it was, I calmed down. My headaches are triggered very easily. I can't wear my hair in a band. Even a bobby pin will start a headache..Being outside, etc. but nothing like what you have been through. I hope that has subsided for you.

Michelle

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Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

On 7/27/2014 Ford1224 said:
On 7/25/2014 okiebug said:
On 7/25/2014 Ford1224 said:
On 7/25/2014 Mama Mia said:
On 7/25/2014 Ford1224 said:
On 7/25/2014 addiegal said: Madisson I, too, know people with polymalgia rheumatica and yes it is treated with steroids. It is more ,as the name implies, rheumatic in nature, an autoimmune illness. But it sounds much like the pain of fibro. I take metformin due to insulin resistance and a tremendous amount of diabetes in my family. You are right it is not to be ignored...my mom was on insulin and later metformin was added in hope it would help her use her insulin more efficiently. Hope everyone is having a good day...it is sunny here and that always makes me feel better! Mind thing, I know.

Fibromyalgia, like Chronic Fatigue Syndrome is an autoimmune disease. So is a form of hypothyroidism called "Hashimoto's Disease." When I was first diagnosed with hypothyroidism, I had no idea it was going to lead me to many other autoimmune diseases the worst of which are Type I and II diabetes, multiple sclerosis, and rheumatoid arthritis. So far I do not have diabetes nor MS, thankfully.

All in all, once you get one autoimmune disease, you are more likely to get others as you go through life. Mayo Clinic does not describe polymyalgia rheumatica as an autoimmune disease, and I wonder why.

I don't know why either, it is described as an inflammatory disease, in muscles and joints, achey all the time. I took Prednisone, low dose for quite awhile until my internist had me wean off it. He put me on the gabapentin, but it also says the PMR doesn't last a long time, that is why I guess I should go to a rheumatologist. The thing was, my DH had a rare cancer a couple years ago, etc., more surgeries, then I had colon cancer and chemo, last year, just all at once.

Ford, I am glad you don't have MS or diabetes. Of the two, I would choose the diabetes, as I think it is more treatable than MS.

mm


I agree. MS is the worst of these three. I do have other conditions and I already listed them somewhere within this thread, so I won't go through them again. Suffice it to say my life is pretty much uncomfortable at the least, most of the time.

I went to my GP yesterday and she is suggesting a pain specialist and that would include needle injections into my back. I will have to think on that one. Sometimes they do more harm than good (as with everything else).

Ford, are these trigger point injections? I had those many years ago and they helped tremendously. Mine were novacaine injections, it was many years, but I think they did about 20-25 injections across my shoulders and down the sides of my spine. they numbed the areas where the nerves were firing and allowed them to calm down and stopped the muscle spasms and pain. I really believe the injections were what put me into remission for several years. I had no side effects, other than the stinging at the injection point during the shot.

I'm not sure what kind of injections they are or how many I will need, since my back hurts all over. I will be very careful, as usual. I remember having a shot once (not knowing it was because one of the vertebrae in my lumbar spine was "compressed"). I was much younger then and just did what I was told. I remember it hurt more for a couple of days but then went away for a very long time. So I guess I will play it by ear. It sure would be nice if I could get rid of the pain enough to do some exercising, so maybe my muscles wouldn't be so weak.

Ford.. I hear you about the exercise thing. I have lumbar and cervical stenosis so I just cannot handle regular exercise. I need to get my muscles stronger too. Maybe some kind of stretching. I just don't have the energy, and then I get weaker, and so it goes round and round. Very frustrating. I am so afraid of shots. My mom had one when she was much younger, and she didn't have a good experience. Feel better!

Michelle

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Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

On 7/28/2014 okiebug said:

Good morning ladies {#emotions_dlg.biggrin}. I hope everyone had a good weekend.

Madisson, I totally understand about your DH - mine is the same way. Is really understanding about the fibro, et al, but not about having a clean house for company.

About klonopin, I've been taking it for at least 12 years and just within the past 3 months it was put on the controlled substance list in OK. I don't understand the new laws in OK. Some require a written prescription every month, some like my hydrocodone, require a new prescription every month but it can be faxed in, the klonopin requires my D/L, but I can get a 90-day prescription with automatic refills. I'm on 2 mg at night and 0.5 in the morning.

Does anyone else go to a chiropractor? I've been going to the same one for 20 years. He uses an activator and works on my muscles like acupressure. I can't handle manual manipulation but the activator helps tremendously.

okiebug. Here in the state of NY they are so strict about controlled substances. The dr,'s really don't get how badly I feel and are so afraid to prescribe anything that is controlled. It is very frustrating. I am also on Klonopin. My dr. "lets" me have 2 milligrams for the entire day. There are some days I don't even take it, and other days I need it to get rid of anxiety or to sleep at night. Do you find it helps you. It doesn't really do it for me.

Michelle

Michelle

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Posts: 299
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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/28/2014 luvmyteddy said:

The only pam I found that I could take during the day for fibro and mainly anxiety is oxazepam. It is the only one that doesn't knock me out. I take half a lorazepam at night to sleep. I have tried everything over the last 10 years and nothing helped for fibro. I also take pain pills. I use to belong to the old Fibro Thread from a few years ago.

I am in bed 23/7 and it is a pain. It all started with Lyme Disease and then progressed to everything else imaginable. CFS, nerve damage, PTS, Epstein Barr, fibro, headaches, herniated disks, auto immune disease, mold spores, diseased colon, you name it, I have it.

I wish I had someone to help me but I don't. Family, friends and neighbors have all disappeared over the years. I would say if I had to pick just one thing it would be the lack of no energy and no desire to eat. No one would find me for weeks which is sad but I have my pets and it's the only reason I am still fighting to eat.

I have a dr's apt I just made for today but it never helps. I will have to take a taxi and if I could go in my pajamas I would and have before. Whoever thought something like this could happen to someone fairly young and there's no cure.

Good luck to all and if you have someone consider yourself very fortunate.

luvmyteddy.. Hi. I am sorry you are going through so much. Have you looked into Meals on Wheels or something like that. This way your meals would be delivered to you. I know it takes energy just to eat something, let alone make it, so maybe this will help. How many pets do you have? Gotta love them!

Michelle

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Posts: 1,342
Registered: ‎10-13-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Hi Mishell5, slept a little later today to make up for yesterday! Really worked my tush off yesterday, and my back was really killing me. DH massaged my back last night. He is afraid that I'm going to have a fibro flare up because of all the physical work I've been doing.

So you do live on Long Island? Very nice, I hear. I know it's a pretty large island...large enough to have different cities on it. Like I said, my nephew and his wife currently rent in Queens, but they are looking to buy on Long Island. I don't know how they can manage it, as they are both high school teachers and are both working on their doctorates. She grew up in Brookville on Long Island, and her father works on Wall Street. I have a feeling that daddy is giving them the house. Must be nice to have grown up with wealth! Neither my husband nor I did. We both worked our tushes off for everything that we have. We don't want to spoil our children by giving them houses, etc. (not that we could). We want them to have a strong work ethic and earn their own way through life like we did. I guess I could have had a free ride on my husband if I wanted to, but I worked as a nurse from the time I graduated until retirement...only taking off a couple months after the birth of each daughter. I like to think that I contributed something to what we have.

I know what you are saying about never having seen the Statue of Liberty. I grew up in LA, and there are many things I never saw back then...same with my husband who grew up in St. Louis. We are trying to make up for the LA omissions now and are taking our daughters and grandchildren to many sites on the weekends. Seems like the grandchildren always want to go to Disney Land and that sort of thing, but we're determined to get them into the museums and other educational sites at least now and then.

I'm so sorry to hear that your husband is out of work right now. That is just such a sad situation that so many people are in. I hope he finds something in his field soon. I volunteer at a food bank one afternoon a week. It is amazing the number of people who need to come in there. There is rarely any down time without customers when I work there.

Well, Mishell...guess I better press on here. Still a little work to be done on the house before our guests start arriving this afternoon. Have a great day, and try to jump into that pool for a little aqua therapy! I know it must be very humid where you live.

Some people do drugs. I do shoes....Celine Dion
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Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Hi Madisson..so glad you got to sleep later. One off night can really set you off, as you know. Sorry you are having back pain. So much stress, emotional and physical with company coming. I know it is next to impossible, but try to take it easy. Ugh! I am also having back pain. Note to self...don't walk in the shallow end of the pool. I figured I should move, and I should, but that was not the ideal exercise. I can hardly walk. I am using a heating pad. My back pain just radiates down my legs, and I am so stiff. GRRRR!

So you are originally from LA. My Aunt and Great Grandmother lived in Brentwood and then moved to Rancho Mirage. So beautiful there. You are lucky to get sun all year round. I get into a horrible SAD funk in the winter. Yes, we live on Long Island. I grew up on the beach, and we moved more to the north part of the Island. But... it is only about a 20 minute drive to the ocean. As a kid and teen, I used to spend all my vacations in Florida... Miami, Hollywood. now not so much.

OK... so Brookville is muy rich. Very expensive place to buy and live. My cousin used to live there. If your nephew and his wife are teachers, no, they are not making a lot. (my mom was a teacher)Seriously, we cannot even afford to live here. But we are fine, really. My husband's job was one he had for over 30 years and it was a heart attack waiting to happen. Management changed and it was a very emotionally unhealthy place to work, so in a way it worked out. We also did not have anyone buy us our house. We lived in apartments until we could afford to own one. I think when you do it yourself you really appreciate it in a way that you never take it for granted. Yeah....Wall Street..Lots of dinero! LOL!

I have my Masters in Social Work but I haven't used since my 20's. Just not my interest. People change....

It's been really humid here, which I love. But today is dry and cooler. Hopefully the pool will be warm enough today. It has been really beautiful this summer, but it is going way too fast. Have a great day and just take some time to breathe and rest. Good luck with the company!

Oh.. I wanted to say that it is awesome that you take your grandchildren to such interesting, cultural places. Of course they want Disneyland. We used to go to Disney World a lot, when the kids were little, and not so little...Ha! But that was a week vacation. There is still so much to do here where we live, and we haven't even seen or done them yet.

Have a great day!

Michelle

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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/28/2014 Mishell5 said:
On 7/28/2014 okiebug said:

Good morning ladies {#emotions_dlg.biggrin}. I hope everyone had a good weekend.

Madisson, I totally understand about your DH - mine is the same way. Is really understanding about the fibro, et al, but not about having a clean house for company.

About klonopin, I've been taking it for at least 12 years and just within the past 3 months it was put on the controlled substance list in OK. I don't understand the new laws in OK. Some require a written prescription every month, some like my hydrocodone, require a new prescription every month but it can be faxed in, the klonopin requires my D/L, but I can get a 90-day prescription with automatic refills. I'm on 2 mg at night and 0.5 in the morning.

Does anyone else go to a chiropractor? I've been going to the same one for 20 years. He uses an activator and works on my muscles like acupressure. I can't handle manual manipulation but the activator helps tremendously.

okiebug. Here in the state of NY they are so strict about controlled substances. The dr,'s really don't get how badly I feel and are so afraid to prescribe anything that is controlled. It is very frustrating. I am also on Klonopin. My dr. "lets" me have 2 milligrams for the entire day. There are some days I don't even take it, and other days I need it to get rid of anxiety or to sleep at night. Do you find it helps you. It doesn't really do it for me.

Michelle

Michelle


I don't take it for anxiety, wasn't really aware it was an anti-anxiety drug. Klonopin is also a medication for Parkinsons, it calms involuntary muscle movements. Even though right now I'm on a low dose, I can't go without it. I carry some in my purse at all times. My neurologist prescribes it, but my pain management dr keeps track of my dosage as well.

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Posts: 299
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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/29/2014 okiebug said:
On 7/28/2014 Mishell5 said:
On 7/28/2014 okiebug said:

Good morning ladies {#emotions_dlg.biggrin}. I hope everyone had a good weekend.

Madisson, I totally understand about your DH - mine is the same way. Is really understanding about the fibro, et al, but not about having a clean house for company.

About klonopin, I've been taking it for at least 12 years and just within the past 3 months it was put on the controlled substance list in OK. I don't understand the new laws in OK. Some require a written prescription every month, some like my hydrocodone, require a new prescription every month but it can be faxed in, the klonopin requires my D/L, but I can get a 90-day prescription with automatic refills. I'm on 2 mg at night and 0.5 in the morning.

Does anyone else go to a chiropractor? I've been going to the same one for 20 years. He uses an activator and works on my muscles like acupressure. I can't handle manual manipulation but the activator helps tremendously.

okiebug. Here in the state of NY they are so strict about controlled substances. The dr,'s really don't get how badly I feel and are so afraid to prescribe anything that is controlled. It is very frustrating. I am also on Klonopin. My dr. "lets" me have 2 milligrams for the entire day. There are some days I don't even take it, and other days I need it to get rid of anxiety or to sleep at night. Do you find it helps you. It doesn't really do it for me.

Michelle

Michelle


I don't take it for anxiety, wasn't really aware it was an anti-anxiety drug. Klonopin is also a medication for Parkinsons, it calms involuntary muscle movements. Even though right now I'm on a low dose, I can't go without it. I carry some in my purse at all times. My neurologist prescribes it, but my pain management dr keeps track of my dosage as well.

Thanks for that info... huh... maybe that is why it doesn't really calm me down. It takes the edge off. It does not work on my fibro, that is for sure. Advil works better. I am really happy that it works for you. That is great. I see my Dr. on Tues., so I am going to have a talk with her about my meds in relation to the fibro. My rheumotologist put me on lyrica, but I got muscle cramps in my legs, so I stopped it.

Michelle