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Super Contributor
Posts: 299
Registered: ‎01-30-2011

Re: Fibromyalgia Sufferers...A Place to Meet

On 7/24/2014 addiegal said: I am sorry your husband has this...my mother had neuropathy in her hands and feet due to her diabetes. It was her biggest complaint and I understand why! Hope your husband can get passed the side effects of the chemo.

Thanks addiegal.. my husband was allergice to the chemo he had. But it worked so he was able to stop. It was for a rare disease called Amyloidosis. It is like a blood cancer. The proteins build up in the bone marrow, and they spread (Amyloids) and attack the organs of the body. His kidneys got hit, and his heart was the next place it was starting to show. So he was in a trial and got chemo and then a stem cell transplant. Last year at this time he was still pretty frail and couldn't eat certain things or be near people. The neuropathy is the one thing that is left over, and who knows if and when it will go away. This seems to be the only symptom he was left with that is painful and that lingers. You know from your Mom how that goes. The Lyrica helps, but does not stop it. After what he went through, this is the least of it, but still... it is bothersome to say the least.

Michelle

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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/24/2014 grandma r said:

Thanks to my new friends for caring. So many of us have dealt with unnecessary nonsense for years, not to mention being treated like we were off our rockers. This is a real condition and being made to feel as if we are imagining the symptoms is grossly ignorant. I am so happy that we have this forum as our own support system.

I truly wish each person suffering the hope of finding some help to feel better each day.

grandma r.. you are so sweet. Yes, it really is important that people understand that Fibro and all that goes with it, is REAL!
This is a great place for all of us to discuss and share!

Michelle

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Re: Fibromyalgia Sufferers...A Place to Meet

I don't look at the forums much anymore. Sometimes the ones I thought would be interesting turned out to have too much "drama." For some reason I decided to check them today and was so pleased to see that the fibromyalgia thread has been restored.

Unless one deals with the issues that accompany this "syndrome", no one can completely understand them. I've had fibromyalgia for almost 25 years, and Lyrica has worked for me w/o any side effects. I'm retired now, and feel better because the stress of my job has been eliminated. I take one day at a time and do what I can to get through the day (trying to be as productive as I can be.) I volunteer on church projects twice a week and attend Bible Study once a week, so that gets me out of the house.

My goal is begin a fitness plan. Our local YMCA had a special last week where I could join my husband's existing membership for $10.00. Now, I want to go there next week and meet with someone who can design an exercise program specifically for my fibromyalgia/osteoarthritis health concerns.

Now that you know my history, I do have a question-------Has anyone else become extremely sensitive to noises since your fibromyalgia began? I can't sleep with the windows open because nighttime noises sound like explosions to me. That's just one example. I do wear earplugs and they really help me sleep through the night. Just wondering.................

I so much appreciate reading all of your comments and thanks to misshell5 for resurrecting the thread. I don't feel so isolated anymore, and it is helpful to share with others who understand!!

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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/25/2014 Madisson said:

Good Morning, Everyone! Hope you all are having a low-pain day. Sometimes I can almost rate my days as low-pain days, high-pain days, etc.

Have another busy day planned. We're having lunch with relatives visiting in the area (but not staying with us). Then I'll come home and keep working on the house for the relative who do stay with us next week. The day after they leave, we have other relatives visiting in the area (who are not staying with us). Everyone wants to visit SoCal in the summer. I would choose to visit in the fall or spring if I were them.

Sneef, I hope you are feeling better. I am truly concerned about you not being on a med for your diabetes. There are other meds beside the metformin if you were getting side effects from that one. Pain from neuropathy is so common in diabetes. That diabetes is nothing to mess with. You could go on another med while you are waiting for the essential oils and supplements to kick in. I hope you are at least checking your blood sugar a few times a day. Keep us informed on how you are doing.

Michelle, my dentist appointment yesterday went pretty well...just cleaning, exam, and x-rays. Then the dentist decided he wanted to crown three of my teeth. I agree with one of them, but another dentist had already explained to me why my very last teeth on both sides could come out rather than crown them, as they are wisdom teeth. I told him that, and he said..."Well, if you really want to keep them, I would crown them." Ha! Ha! No thanks. I am so happy that your children are understanding of your fibro. Not everyone gets that understanding from their family. I have diazepam for anxiety. It works better than anything else for me. The doctor allows me 45 5 mg tabs a month, but I don't use that much in 3 months! Usually I only take it if I can't sleep at night...occasionally when something happens that sends me into orbit! LOL! It also works well as a muscle relaxant.

Grandma r, you hit the nail right on the head when you said that doctors used to think fibromyalgia was all in your head. Some doctors still do think that. They are the uneducated ones. Who wouldn't be a little anxious or neurotic after being in pain for years and not being taken seriously by doctors? I am retired now, but I used to be an RN. I would really give it to doctors who didn't take fibromyalgia seriously! They usually stayed clear of me after that. LOL!

Okiebug, thanks for the information on the Tai Chi. I will check around to see if it is taught in my area. It sounds like a pleasant form of exercise.

Addiegal, I am so happy that you are on diabetes med and that your doctor titred you up gradually. That diabetes is nothing to mess with. My brother refused to take medication for it at first and ended up losing part of his foot due to a wound that would not heal. My cousin (another man) refused to take medication for it also (saying he could control it on his own), and he had a stroke in his 40's. He is now paralyzed on one side. I have a friend who took her medication "when she remembered it," and she had a heart attack at age 39! I could go on and on with patients I encountered over the years.

Mama Mia, polymyalgia rheumatica can feel very much like fibromyalgia. I know that a lot of people with it have to take steroids. I'm glad you are going to see a rhematologist. I would not do well if I had to take steroids. A couple weeks ago I had to take 30 mg of prednisone a day for a fractured rib and severe spasms...and also a shoulder injury. Wow! I usually perspire very heavily on my own because my antidepressant causes hyperhidrosis. On the prednisone, I literally poured perspiration...it was terrible. My hair was soaked, and I had to change clothes 3-4 times a day as they soaked through! The prednisone helped though. I know people can get all kinds of side effects from prednisone.

Happy Friday morning.. almost noon here..to everyone! Today I plan to get some sun and pool time. Hopefully, a calm day.

Madisson. Your advice to everyone is stellar. I know nothing about these things. I don't blame you for not having those caps. Who needs that hassle, and pain. My dentist told me I have a pocket. I have had this for years. I don't think my dental plan covers anything, so I will just live with it..for now. But, my new night guard is being made, and I cannot wait to get that thing! Mine broke and I REALLY need one. I have tinnitus and hearing loss, and get headaches from bruxism, so yeah, definitley cannot wait. It will be ready in one week;

I also rate my days in relation to fatigue and pain. I fell up the stairs so last night my shoulders and neck were hurting. I took Advil which helps, but I am not supposed to take it due to stomach issues. I didn't care. I needed to sleep!

Just reading all the things you have going on makes me tired. Yeah...why do people visit you in the summer. It is hot there now. I've been to So Cal when I was younger (except when it was a layover for our flight to Hawaii). My Aunt lived in South Cal, and then she had moved to Rancho Mirage. So I must have been about 10 or so when I visited her and then a few years later my grandmother took me to Santa Monica to visit her mom...my great grandmother, who was living in a place for seniors in Santa Monica, near Venice. One day I want my family to see that part of the world. I don't think our cat, Pudding, would appreciate us leaving her. He is very attached, and a sweetheart! She was younger when we used to travel, and still didn't like being left home (neighbors watched her and she could stay in her home..she hated it. )

I am very lucky that my kids and husband are so understanding. They are awesome!

How is diazepam differnent from Klonopin? The muscle relaxer part sounds good. I usually take 1/2 or 1 milligram, like you take the diazepam. I have been on ativan and also xanax, but this is what I ended up on. Hate that anxiety!

Hope you have a good day! Don't get too tired!

Michelle

Michelle

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Posts: 325
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Re: Fibromyalgia Sufferers...A Place to Meet

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

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.

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: 325
Registered: ‎06-09-2014

Re: Fibromyalgia Sufferers...A Place to Meet

There is conflicting information on fibro...some say autoimmune, others that it is not autoimmune. There doesn't seem to be inflammation in fibro but there is in polymyalgia rheumatica. Ford hopefully you want get any more autoimmune diseases...but there are syndromes that include several autoimmune diseases, so, if you have one you may get more!
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Re: Fibromyalgia Sufferers...A Place to Meet

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

"Cats are like potato chips, you can never have just one".
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Re: Fibromyalgia Sufferers...A Place to Meet

MamaMia, how long have you had PMR? I am so sorry you and your husband have had so much to get through.
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Re: Fibromyalgia Sufferers...A Place to Meet

On 7/25/2014 Northcoast said:

Now that you know my history, I do have a question-------Has anyone else become extremely sensitive to noises since your fibromyalgia began? I can't sleep with the windows open because nighttime noises sound like explosions to me. That's just one example. I do wear earplugs and they really help me sleep through the night. Just wondering.................

I've become much more sensitive to noise. I can't go to movie theaters anymore or concerts because I feel almost physically pummeled by the noise. Because of my husband's work, I have to go to lots of receptions/cocktail parties/parties and sometimes I find myself backed up against a wall somewhere about to scream for the noise of lots of people talking at once, like a swarm of bees surrounding me. I don't mind regular household noises so much, but do keep fans going for the air flow, but also for white noise.

I have read, can't remember where, that fibro sufferers can be more sensitive to noise. I certainly am. Sorry you are, too.