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Old 06-14-2013, 05:24 PM   #1
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Fibromyalgia what can you tell me

For the past year I have had what appears to be fibromyalgia. I have had bad luck getting info from doctors so I am wondering what others who have a diagnosis might share.

 
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Old 06-14-2013, 08:25 PM   #2
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Re: Fibromyalgia what can you tell me

Hi Woodsman, first fibromyalgia is a muscular disease, with "trigger" spots. It is diagnosed via process of elimination. Usually u go to a Rheumatoid Doctor, who will do bloodwork. If all is good then they take ur complaints and what they find to give u the dx of fibromyalgia. I too have this and am on Lyrica 2x day,it does help, but I still have pain. Before I was placed on it I couldn't move, the pain was so bad. I wish u luck, if u want to ask me more personal questions regarding the disease feel free to ask , gl

 
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Old 06-14-2013, 10:28 PM   #3
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Re: Fibromyalgia what can you tell me

Hi Woodsman, First of all what makes you think that you have Fibromyalgia, and second who are the Dr.s that are not giving you info on it and why not? If you are seeing Dr.s that don't believe in Fibro then you are out of luck with them my friend, any Dr. or Gp can diagnose you with fibro including the Rheumatologist that Madhatter2u spoke of. But first you have to find out exactly what you are dealing with. I have been diagnosed with Fibro for 18 years now and my suggestion to you is to research it on the internet first... Fibromyalgia trigger points. I believe there are 18 trigger points (they only knew of 11 of them when I was diagnosed) The trigger points are the only way that they can begin to diagnose Fibro. These trigger points are very painful areas, there are usually pictures to point these out, you don't have to have all 18 points, but if you have a lot of them then you could be a candidate for Fibro.

When looking for a Dr. my suggestion is to look for a good Pain Management Doctor, when calling to make the appointment it is good to ask if the Dr. believes in and is empathetic to Fibromyalgia, if the answer is yes then believe me that is the person you want to have on your side of the court. I wasted 15 years going from Dr. to Dr. with very little results except a mouthful of pills. Maddhatter2u is correct about the Lyrica, it is a wonder drug for Fibro patients, I still take it today. I also want to add that at first Fibro was a women's disease, only women were diagnosed with it, but now more men are also being diagnosed with it and has been a major breakthrough for men. So find a Dr. that fits you and do your rearch, Mayoclinic.com is a good source.

Good luck to you and I hope you find out soon what is wrong.
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Old 06-15-2013, 08:20 AM   #4
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Re: Fibromyalgia what can you tell me

Hi there are so many things that go with fibro we could fill many pages. Actually we have lol. The best advice I can give you is to read as much as you can here, go back many pages and you'll likely learn more than you want to lol.

 
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Old 06-21-2013, 06:11 PM   #5
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Re: Fibromyalgia what can you tell me

Woodsman, there are some people who have FM but don't have the minimum 11 tender points. Blood test should be taken to rule out other causes that have the same symptoms of FM. my GP diagnosed me and gave me nothing more than a low dose of an antidepressant and like yours didn't give me any information. What I've learned comes from lots of research and joining Fibro boards.

I just switched doctors and hope this one will offer more help as I'm in pain of some sort and degree on a daily basis. I've also read that lupus sufferers haveany of the symptoms that FM patients suffer with so have that ruled out.

It pays to be well informed so research, research, research!

 
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Old 06-26-2013, 06:52 AM   #6
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Re: Fibromyalgia what can you tell me

You are a rarity for one, 80% of FMS sufferers are women. PAIN, muscle stiffness and then joints are what you can expect. Stay off their killer drugs like Lyrica it has a 50% side effect failure rate along with it's companion drug gapatin (sp?). Keep a positive attitude, start taking vits and mins, and I don't mean those OTC things many are not high enough in dosage to be any help.

Hot soaks before bed time. It will help you sleep better. Lack of sleep is a aggravating factor in FMS. Stay off the mind numbing drugs and sleeping pills. Look for natural alternatives like Melatonin, St John's Wort.

Get your thyroid checked by an ENDOCRINOLOGIST, not your PCP. Letting your primary do the testing is like going to him for a tooth extraction. He does not have the knowledge to read and dose correctly. Thyroid and FMS are tied hand in hand in most FMS sufferers. Stay off their killer drugs or you will have no GI system and have to live on Nexium, and that comes with it's own complications.

I am a 26 year survivor of FMS.

 
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Old 06-27-2013, 03:02 PM   #7
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Re: Fibromyalgia what can you tell me

I agree with Redsmom! Research Research Research! We are not all alike. I have been taking Lyrica for years after going through a few side affects for a couple of weeks. If not for that I would not be typing this. Try and read all you can on the boards, try your own meds whether OTC or RX is totally up to you and your body. Keep us posted on your progress. We are always here for you no matter to answer questions or just to vent.

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Old 06-28-2013, 06:17 AM   #8
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Re: Fibromyalgia what can you tell me

Quote:
Originally Posted by Woodsman83709 View Post
For the past year I have had what appears to be fibromyalgia. I have had bad luck getting info from doctors so I am wondering what others who have a diagnosis might share.
Here is a great place to start your education into our world of pain. Mayo Clinic not some fly by night blog. Although you will find from those blogs the truth about the drugs like Lyrica and Cymbalta which are the 2 main drugs docs like to use, STAY AWAY from both, they are high side effect riddled. Look them up is my moto. Not all drugs are good for you and cause other health issues you end up with more drugs for putting you on the pill roller coaster.

FMS comes with it's on 'brain' fog and you do not want any drug that has mental fog to add to it, it makes you feel like you have Alzthimer's. You are so mind dead you can't function.

http://www.mayoclinic.com/health/fibromyalgia/DS00079

 
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Old 06-30-2013, 11:23 AM   #9
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Re: Fibromyalgia what can you tell me

I truly do not feel mind dead! Like I said what works for some may not work for others. Be honest with your doctors and if they are not helping just fire them and move on to the next. Eventually you find what helps and who cares how you are feeling. It's a quest for comfort. The pain never really goes away we just change the way we feel about it!

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Old 07-01-2013, 07:03 AM   #10
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Re: Fibromyalgia what can you tell me

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Originally Posted by catkaru View Post
I truly do not feel mind dead! Like I said what works for some may not work for others. Be honest with your doctors and if they are not helping just fire them and move on to the next. Eventually you find what helps and who cares how you are feeling. It's a quest for comfort. The pain never really goes away we just change the way we feel about it!

Low Pain All,
I have fired quite a few, the latest a bad back doc, I was sent to for neck diagnostics, he failed to do them, sent me to a 'certified' PT, who did more damage to my neck and popped the L 4/5 compression fracture, causing lumbar and pain in both legs. He did a CYA Xray and no one but him read it. I reported him to the ENT who sent me to him as well as my PCP. Got totally ignored. I was called mean, nasty and disturbed i.e. as in mentally disturbed. I had not even raised my voice at that time. But when I fired him I sure did and his whole waiting room heard it as I made sure the door was open when I did. I do not tolerate such treatment, or bad doctors.

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Old 07-03-2013, 06:40 AM   #11
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Re: Fibromyalgia what can you tell me

For some people, hypothyroidism can contribute to joint and muscle problems. Specifically, hypothyroidism may lead to:
Muscle aches, tenderness and stiffness, especially in the shoulders and hips Joint pain and stiffness Swelling of the knee joint and small joints in the hands and feet Carpal tunnel syndrome Reducing pain. Although common over the counter pain relievers such as ibuprofen (Motrin, Advil, others) or acetaminophen (Tylenol, others) can help with pain, adequate thyroid hormone replacement is the primary treatment and often dramatically reduces pain. When to see your doctor
Keep in mind that people with the most common form of hypothyroidism have an increased risk of developing other autoimmune diseases, such as rheumatoid arthritis. If pain, stiffness and swelling don't improve after adequate thyroid treatment, consult your doctor. He or she may consider other possible causes of your joint pain.

FMS sufferers, quite a few of us have low or Hypo Thyroidis, My Endo just lowered my dose in about 4 days joint and muscle pain are through the roof again.

And in case you missed it in biology class your Thyroid is like the Master gland in your body and touches all aspects of your body. Dosing is critical.

With many on low cholesterol and using non Iodized sea salt you are not likely to get enough Iodine, which helps make your Thyroid function at it's best. White sea salt is Bleached, natural sea salt is lt pink, lt gray or gray. Redmond's has a lt pink fine grind and it take less of it for taste buds to like.

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Old 07-04-2013, 05:25 AM   #12
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Re: Fibromyalgia what can you tell me

Hi, I spent over 5years being told by my doctor the pain I felt wasn't real until I saw a specialist. Its difficult when your doctor is like that. Find a different doctor or see a specialist. I found out more online than from my doctor.
http://www.niams.nih.gov/Health_Info/fibromyalgia/

 
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Old 07-04-2013, 01:52 PM   #13
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Re: Fibromyalgia what can you tell me

Quote:
Originally Posted by Grace36 View Post
Hi, I spent over 5years being told by my doctor the pain I felt wasn't real until I saw a specialist. Its difficult when your doctor is like that. Find a different doctor or see a specialist. I found out more online than from my doctor.
http://www.niams.nih.gov/Health_Info/fibromyalgia/
You can thank the net then, because 26 years ago all we had were books from the local liberary. Fibro was a syndrome back then, much like chronic Fatigue. And not all Arthur docs knew much about it. PCP's know nothing about it or how to treat it. It's like taking your car to your dentist and telling him to fix it.

Some things need specialist, FMS is one of them. Not all have luck with Pain Management, and often FMS leads to other auto immunes. Only take 1 drug at a time and MONITOR what it does for you. Have an Endocrinologist check your thyroid, NOT a PCP...car/dentist thing. Even the smallest change in your thyroid means MORE pain in your muscles and joints. I'm going through that now, the doc lowered my Synthroid, AND only get the name brand, the generic is crap. It took only 4 days for my body to notice the difference, and he says I have to stick it out another 3 weeks, then will reassess.

 
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Old 07-04-2013, 06:08 PM   #14
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Re: Fibromyalgia what can you tell me

Hi Woodsman83709,
You are getting a lot of information here, which is exactly what you want! I'm sorry that you aren't getting the help you definitely need. I agree with almost everyone who has responded to you. I think it is SO important to find a doctor who has heard of AND UNDERSTANDS IT AND BELIEVES YOU. My first doctor didn't care one bit about my pain. Or my headaches, nothing. I got lucky by having to go into the quick care unit of my doctor's building after hours one day for a very bad migraine and back pain. The nurse on duty at the time was AMAZING and she told me about a pain clinic in my area. At my next appt with my "doctor" I convinced him to give me a referral to see them. He did and from there, after tests and different treatments I was diagnosed with FM. Most of my pain is in my lower back, tailbone, hips, legs, knees and has recently started affecting my feet. I also have elbow pain as well has pain in my hands. The pain is terrible. I have pain every single day, EVERY single day. I am still learning how to deal with it. Rest and movement, I am slowly realizing, are very helpful. Learning to know that you have to stop what your doing sometimes to sit down or even lay down, is important. I have only known that I have FM for 9 months or so. I think it is going to be a long road, learning all the time what will help and what will not. Re meds, I take Lyrica 3x a day at 100mg each. Yes, there are side effects, the biggest for me is weight gain. Early side effects were sleepiness and feeling loopy. I also take Cymbalta, 60mg daily. I can tell you this. Without Lyrica and Cymbalta I would not even be moving right now. I would be too exhausted and in too much pain to do much at all. Research as much as you can, really! I was SO NOT a research kind of person before all of this started!! But I have learned how important it is. Not only that, but its helpful for YOU. You can advocate for yourself, you can learn what others are going thru, such as you are right now! No matter what type of meds you end up taking, and I don't care WHAT they are. OTC vitamins, prescription vitamins, pain meds...there are going to be side effects. Some are nothing to worry about and others can be very risky. Do your research, ask questions of your NEW doctor and make the best decisions that you can. If something doesn't work for you speak up and try something else. If something does work for you but goes against popular conviction, stick with it. Its your life and you need to do what works for you! Good luck and stay in touch with us!! Everyone here cares. I can't tell you how much of a difference this board and all on it have made in my life <3

 
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Old 07-05-2013, 05:53 AM   #15
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Re: Fibromyalgia what can you tell me

Remember doctor's are not GOD. There is no magic pill that can fix FMS. Often the pills they put you on make you sicker, best advise I have there is do 1 at a time and monitor it. If it does not bring results or the side effects out weigh the supposed benefit, ditch it. And if you are a working person that doubles your stress load. De-stressing is good for you. As many have said not all treatments or meds work for all people, we are individuals and treatment for FMS must be customized to each of us. Each of us were different ages when FMS started, and are at different ages now. Some have only had a taste of it for a few years, others like some of the senior members and me have had it going into our third decade.

But it did start well before that in childhood. Those leg cramps and muscle pain and stiffness they tell us are 'growing pains' are not always that. And if you play sports it masks a lot of the precursor symptoms, which lie dormant until something triggers them. It puzzles researchers who look at peri-menopause and up age groups and that 80% are women. They never think to ask when did you first have ANY symptoms. FMS is weird it can come on gradual or quick.

PLEASE look up the side effects of LYRICA and CYMBALTA before taking them. Weight gain, hair loss, loss of sex drive, mind fog are just a few of them and for some of us more joint pain. Use the drugs with the least side effects. For me than means Valium 10 mg per day, it takes care of 2 issues the muscle pain and lets me sleep at night. Yet does not bother my day time hours, and I don't have to deal with a lot of nasty side effects. And keeping my Thyroid med at the right level also plays a big role in muscle and joint pain. Since mine was just lowered 2 weeks ago I can tell a BIG difference in the rise of muscle and joint pain. Have to wait 3 more weeks before the Endo will consider returning my higher dose that worked so well.

A body at rest gets stiff. Stay as active as possible, just take rests as you need them. Try not to sleep during the day it takes away from the deep sleep you need for healing at night. Establish a nightly routine.

And be aware you know your body better than any one else. Be aware of our Patients Rights. You have the right to refuse or reject any treatment or drug you deem dangerous to you. I have sent many RX's back to the pharmacy when I find my PCP has prescribed one off my DO NOT GIVE LIST. He :-( does not read the blooming thing before prescribing.

Granted with my list of rejected drugs I am hard to treat, I try the new stuff and usually it ends up on the NO CAN TAKE LIST shortly. I don't want the side effects, they are worst than the FMS.

 
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