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Super Contributor
Posts: 1,342
Registered: ‎10-13-2011

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.

Sneef, I too know the pain of migraines. I feel for you. I suffered from almost daily migraines too for many years. Finally, they came out with imipramine and that category of migraine meds. They helped me tremendously...although they were not without side effects. When I hit menopause, the migraines eventually stopped. I would be sensitive to light and noise during a migraine, but fortunately not from my fibromyalgia...but who knows?? They both occurred daily. After awhile, your symptoms all get mixed together.

Being a chronic pain sufferer is not for wimps...so when researchers came out with their new theory that we fibromyalgia sufferers from a lower pain threshold than most people, I wanted to laugh...or scream! I have been told time and time again by chiropractors, physical therapists, and medical doctors that I can tolerate pain that most people would have to be put to sleep for. My chiropractor used to do electrical muscle stimulation on me with the machine cranked up as high as it could go when I had muscle spasms. He said that most people would be flying off the table at that level. Doctors have told me that I have both a high pain threshold and a high pain tolerance. So...IMO, doctors need to keep working on their research to figure out what actually causes fibromyalgia, because having a low pain threshold is not the correct answer. Oh, well...it's better than hearing that it is all in our heads!

Are you avoiding certain foods that might aggravate your migraines...you probably know them...the typical hot dogs, bacon, aged cheeses, red wines, dark chocolate, soy products, etc. I used to be able to trigger a migraine just walking down the cleaning products aisle in a supermarket also. I used to make DH go down that aisle...or I had to hold my breath and run for the product I wanted.

Hope your migraines are getting a little better!

Some people do drugs. I do shoes....Celine Dion
Super Contributor
Posts: 1,342
Registered: ‎10-13-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Good Morning, Everyone! Hope everyone is feeling fairly well this morning. Busy, busy around here preparing for company, and I am beginning to feel the effects of being so busy...as well as the reduction of my Cymbalta. A little more achy today than what is normal for me. DH is telling me to take it more easy, or I might be flat in bed when the company is here. I called in our cleaning lady to do the floors and bathrooms a little earlier than she normally would.

I just saw an interesting article about fibromyalgia/chronic fatigue (on the CNN website, I believe). It postulated that CFS/fibromyalgia are not autoimmune diseases as we thought, but rather are infectious disease caused by things herpes, yeast, Epstein Barr virus, cytomegaloviruses, Lyme disease, etc. The article also mentioned that with CFS, 80% of the patients become ill in one day. I mentioned in an earlier post that that is how my "fibromyalgia" began and that the rheumatologist said that fibromyalgia normally does not come on that fast. Now, I'm thinking that I was misdiagnosed and probably have CFS rather than fibromyalgia. Whatever...they both feel similar (fatigue and muscle aches). I don't know that they have any different treatment for CFS.

It will be 85 here today, and I'm planning to jump in the pool for a little aqua therapy this afternoon. Hope you all have a great "low pain" day. Smile

Some people do drugs. I do shoes....Celine Dion
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Re: Fibromyalgia Sufferers...A Place to Meet

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.


Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
Super Contributor
Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Hi! I hope everyone had a good weekend. The weather here has been strange. Sunny one minute and then rainy the next....very humid and tropical. I do love the tropical weather but the overcast skies and clouds got in the way of pool and outdoor time this weekend. I am trying to get the summer to slow down, since I am not a fan of fall.

It was interesting reading through all the posts and reading the articles. For me, the fibro came on slowly. I noticed that I was feeling achy at night, after dinner. It just progressed. It also got worse after my emergency gall bladder surgery, and it got really bad after my husband went through the medical ordeal. Whatever this is and how we all got it, I don't know. Lately, it has just been getting to me. I know you guys get what I mean.

Michelle

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Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Mishelle, klonopin and diazepam are very similar. Both are schedule 4 controlled substances and are benzodiazepines. Diazepam has a longer half life than klonopin, but other than that they are pretty similar as far as I know. I think it just depends on what the doctor likes to put people on. I have tried klonopin, but the diazepam worked better for me. I did not like ativan either. It made me feel agitated. Xanax has a very short half life and has higher addiction potential than diazepam. My doctor is pretty easy going and let's me choose which one I prefer. The fact that I was an RN probably helps. You are so lucky that your husband and children understand about your fibro. My DH should understand as he is a health professional too, but I'm normally not under the pressure that I am right now to get the house ready for guests, do a lot more grocery shopping than usual, etc. He is usually very understanding about my fibro, but I don't think he understands why women want the house looking perfect for guests!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi Madisson! Thanks for the explanation. I don't love the Klonopin. For some reason it makes me bitc#####y. More than usual anyway. LOL! Ativan used to work great for me, but when I tried it again instead of the klonopin, it just made me tired. Xanax was good, but like you said it didn't last long enough. I really don't know anymore, but I need something to help with the anxiety. Yeah, you being an RN is great and really helpful! My dr. is pretty good, but I don't know what it is like in Ca, but in NY the laws are so strict it makes the dr.'s very nervous about prescribing these particular meds.She is very restrictive on how much of the klonopin I can take and I am not supposed to exceed 2 a day.. 1 mg. each.

I tried taking 40 mgs. of prozac instead of my usual 3 pills a day, of a total of 60 mgs. a day. I was fine and then the OCD and anxiety started to kick in big time, so I am just staying on the 60 mgs. I will just have to have big breasts or OCD, and I am choosing the former. LOL! I see my dr. a week from tomorrow, so I will discuss the gabapentin, etc.

I am VERY lucky that my family really understands how I feel. Your husband is also in the medical field? I don't think men really get that house being a certain way for guests thing. I think they are missing the "seeing the mess and clutter" gene! Good move getting the cleaning lady in earlier. The whole entertaining thing stresses me to the max, and I just don't do it anymore. I never was the hostess with the mostess, but now... no way. My parents live off the Island (I grew up here and they moved), as did my sister. She and her family live in upper NY as well, on the border of Conn. We are not that far from one another, but far enough to not want to deal with the traffic and get on the road. My parents live much closer to my sister now. So I figure they are the ones who left. LOL! Anyway, they all used to get here more often, but now, not so much which is fine with me. My husband has a large family right here on the Island, but that is another story Ha!

Try and take it easy and don't push yourself too hard. Having people over is stressful in of itself, aside from the prep it takes to get ready. How long are they staying?

Michelle

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Posts: 1,342
Registered: ‎10-13-2011

Re: Fibromyalgia Sufferers...A Place to Meet

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

Some people do drugs. I do shoes....Celine Dion
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Registered: ‎04-05-2010

Re: Fibromyalgia Sufferers...A Place to Meet

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.

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Super Contributor
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Re: Fibromyalgia Sufferers...A Place to Meet

My fibro started suddenly. One day my legs just buckled and I ended up on the floor. I didn't fall forward or backward, just crumpled. And I lost control of my hands - I played the piano and suddenly my hands wouldn't hit the right chords on music I had played since I was a child.

Super Contributor
Posts: 1,342
Registered: ‎10-13-2011

Re: Fibromyalgia Sufferers...A Place to Meet

Hi Okiebug, interesting laws regarding controlled substances in OK. I thought Klonopin had been a Schedule IV controlled substance in every state for quite some time!

Yes, I have done a lot of chiropractic in the past, but never tried the activator. Does it actually work? I can't do chiropractic anymore as the last two times I did it, my entire back spasmed up, and I had so much pain the next day that I could not every move a half an inch in any direction when standing. In fact, DH had to literally pull me to a standing position out of bed in the morning. I don't know why this reaction occurred. The chiropractor I used recently actually fractured a rib. Ten years ago, I used a chiropractor who literally pushed my rib cage forward, and I had to go to another therapist to slowly have it pushed back into alignment. I'm sure the problem is just my body, rather than something the chiropractor did wrong. So, I guess no more chiropractic for me.

Wow...your fibro really started with a bang, didn't it? I've never heard of quite that reaction, but nothing is impossible with fibro!

I'm glad my husband isn't the only one who doesn't understand why we women want a clean and uncluttered looking house when we have company. Mine thinks that what the cleaning lady does is enough. My cleaning lady only does the basics every two weeks, and once in a while I call her in for some extra heavy cleaning. Men just don't get it. DH also doesn't understand why I always "tidy up" a bit before the cleaning lady comes. I tell him that I don't want her to think she is cleaning for a couple of slobs. He just shakes his head. LOL! Oh, well.

I hope you have a great day, Okiebug!

Some people do drugs. I do shoes....Celine Dion
Super Contributor
Posts: 2,007
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Re: Fibromyalgia Sufferers...A Place to Meet

The activator is a spring loaded rubber tipped device that just does a quick, light "pop" on your muscles. The medicine (can't think of right word) behind it is to release the knots in the muscles that are pulling the bones and joints out of place. It can be dialed down to a light tap or increased to a firmer tap, but never as traumatic as manual manipulation. My muscles spasm with regular chiropractic too. My Dad was a massage therapist and he did acupressure, which is pressing on the knots of your muscles without massage. The activator works the same way. I can't tolerate massage either. I can't recommend it for everyone because we are all so different, but it's worth talking to a chiropractor who does activator therapy. Not all are trained in it. My DH said this morning that I would be bed ridden without my Chiro and he's right.