I have fibromyalgia, anyone else here have it and what helps?

[diamondfan]

I have had chronic pain and some other health issues (migraines and insomia to name a couple) and have had numerous tests over the last few years to see what is up. Finally after seeing GI, neurologists, cardiologists, internists, endocrinologists and rheumatologists I have been diagnosed with fibro and chronic fatigue. I feel crappy most of the time, good days and bad days but overall not like I felt a couple of years ago. Little energy, poor sleep, muscle pain and weakness...basic misery. I know it will not kill me or damage me, but with three young kids and a hectic life this is just really tough. I was wondering who else might have this and what has worked. I am pushing myself back into exercising since it is supposed to help, used to run 3-6 miles 4 days a week and lately cannot go up the stairs in my house. Anyway, just seeing what all the PS''ers who might be dealing with this have done and what they suggest! Thanks in advance...

 

[ephemery1]

DF, sorry to hear of your suffering... sounds like it has been a frustrating few years. I can imagine it would be a bit of a relief just to finally hear a diagnosis, even though it is discouraging to hear the word "chronic". I worked with someone who was diagnosed with fibro, and I believe she used swimming as a means of exercise that was easier on her joints. I know Cymbalta is a medication (also used as an anti-depressant) that has been used successfully to treat pain and other side effects in fibromyalgia patients... might be worth looking into.

Good luck!

 

[Madam Bijoux]

Sorry I don't have any advice about the fibro, but I hope you find something that helps. If the experts in this area can't find anything to help you, would you consider going to a place in New York that might have more knowledgeable doctors? I used to get wicked headaches when I was in my 20's and 30's, but I don't get as many now that I'm older. The ones I get these days are mostly due to changes in the weather (sinus problems) and they aren't as severe as they used to be. One Fiorinal tablet gets rid of my headaches with a half hour.

 

[diamondfan]

thanks, guys! I am trying a medication that my doctor thought could be helpful. He told me that there are anti depressant drugs from a while back which are not given nowadays as antidepressants because there are better ones on the market, but that they have been helpful in treating soft tissue pain, which is basically what fibro is...what drives me cray is that you cannot see it on an x ray, there is not a way to "see" it...and no one knows why one gets it or what causes it to flare up, though clearly stress and no sleep do not help...UGH

 

[VegasAngel]

I have a friend with fibro. Has your Dr. mentioned going on a high/all protein diet? Alfalfa supplements are supposed to help with pain. As someone else mentioned swimming can be beneficial.

 

[Madam Bijoux]

I apologize if I'm out of line by saying this, but I know from your other posts that your MIL causes stress. Is there any way that you could drastically reduce the amount of time you're around her or cut her out of your life as much as possible? She might be the major cause.

 

[diamondfan]

Madame. not out of line at all. There are definitely ways to go about minimizing it, but hubby wants "nana" in his kids lives, though I think she is the about the suckiest grandmother ever...so I basically go deaf when she comes and spends time here...but yeah, she is a drain on me emotionally...as are other things but hey, we do the best we can, right?

 

[Odilia]

This might sound totally wacky, but bear with me. The first time I heard of fibromyalgia was also the first time I heard of magnet therapy, particularly using a magnetic mattress pad. A girl I used to work with said her mother had a story much like yours: lots of unexplained pain until finally they diagnosed it as fibromyalgia. She got to the point that she couldn''t work her job anymore. Then at a fibromyalgia support group, someone mentioned magnetic mattress pads, so she tried one that had a 30-day free trial, and it really helped! In fact the girl who told me the story said her step-father was totally skeptical about alternative therapies like that, but her mother told her privately that he too was feeling better; his arthritis was subsiding.

I think if you could find a magnetic mattress pad with the money back guarantee/trial period, it''s certainly worth a try. They are expensive, so you''d want to do your research that you''d be getting a good one (you have to have the correct polarization etc..), and for me I would want the trial period, because they may not work for everybody, but with the free trial you''d have nothing to lose. And you''d probably need a 30-day trial, because it may take time to have an effect.

In fact I have chronic fatigue and am starting to have some of the other symptoms you mentioned; your post reminded me of the magnetic mattress pads; maybe I ought to look into it as well!

 

[Odilia]

Just did a quick google search on it and this is one site that came up. I didn''t read through it thoroughly yet, so please don''t hammer me on it if you don''t agree with it!

http://www.mnwelldir.org/docs/therapies/magnet.htm

Just a few excerpts:
Selecting Medical magnets - Medical magnets come in a dizzying range of shapes, sizes and strengths. They range in price from about $5 all the way to $900.

Magnetism is measured in gauss. A typical refrigerator magnet is about 10 gauss. That''s too weak to penetrate the skin-and unlikely to be helpful for anything more than a minor bruise. Medical magnets range in strength from 450 gauss to 10,000 gauss. The higher the gauss, the better the pain relief.

Since magnets aren''t always helpful, it''s best to purchase yours from a company that offers a money-back guarantee of at least 30 days.

Fibromyalgia. Researchers at Tufts University School of Medicine in Boston showed that magnets help reduce muscle pain caused by this mysterious condition.

In the study, patients who slept on magnetic mattresses experienced greater pain relief than patients who slept on ordinary mattresses.

 

[Odilia]

Sorry to bombard you; was just about to sign off and noticed this article from my google search. Didn''t read it yet either but it looks interesting:

http://www.thehealthierlife.co.uk/article/2979/fibromyalgia.html

Fibromyalgia: How A Magnetic Mattress Can Help Put A Stop To The Sleepless Nights Caused By The Chronic Pain Of Fibromyalgia
01.07.2002

While nutrition is key to good health, HSI Panellists recognise that some health problems can require a little more practical help too. So when HSI Panel Member, Nigel Summerley, told us about a revolutionary new magnetic mattress liner, we knew we had to bring you news about its incredible benefits straight away.

The HoMedics Magnetic Mattress Liner, which contains small magnets sewn into its fabric, has transformed the lives of hundreds of people who suffer from fibromyalgia - a condition characterised by chronic and widespread musculoskeletal pain and stiffness, disturbed sleep and fatigue.

Fibromyalgia affects two people in every hundred in the UK, yet its cause is unknown. While conventional drugs, like benzodiazepines and anti-inflammatories, can provide a certain amount of symptomatic relief, they can have unpleasant side-effects.

However, one of the most effective alternative treatments for fibromyalgia is proving to be magnet therapy, especially in helping sufferers to get a pain-free night''s sleep. Magnets have already produced successful results in controlling pain in numerous other conditions, such as gout, and also in helping to heal obstinate bone fractures and soft tissue injuries.

70% improvement in musculoskeletal pain
While most of the beneficial effects from magnet therapy are based on anecdotal reports to date, practitioners who use magnets regularly for pain relief are convinced that magnetic fields have a therapeutic effect on the human body.

It is thought that magnetic fields help to improve blood circulation - bringing nutrients, oxygen and anti-inflammatory agents to inflamed areas - although the exact mechanism by which they do this is still not fully understood.

A large, double-blind study at the San-Ikukai Hospital in Japan, involving a group of 375 patients suffering from a variety of musculoskeletal conditions, including fibromyalgia, showed that magnetic mattresses helped control pain in 70 per cent of people.1

Following these encouraging results, scientists at HoMedics in the UK developed the magnetic mattress liner and put it to the test. A group of ten women were recruited from the UK Fibromyalgia Association (the condition is known to typically affect more women than men) to take part in a six-week trial of the magnetic mattress liner.

Studies show promising results in general well-being and sleep patterns
The participants used no new medication or therapy during this period. They were assessed each week in relation to well-being, pain, sleep, fatigue and tiredness on waking.

For daily reports on the very latest health breakthroughs, join our FREE daily email service:

They were also monitored for their ability to complete daily tasks, including shopping, housework, going for a walk and driving.

At the end of the six weeks, 50 per cent of the particpants reported an improvement in overall well-being of 50 per cent or more; and 40 per cent reported a significant improvement in pain of 30 per cent or more.

In terms of quality of sleep, 60 per cent said there was an improvement of 30 per cent or more (with some reporting a staggering 70-80 per cent improvement). There were similar levels of improvement in fatigue and tiredness on waking.

For maximum results use the magnetic liner for six weeks on, two weeks off
Jan Short, of the Portsmouth and District Fibromyalgia Self-Help Group was one of the people who took part in the UK trial. She has continued to use the magnetic mattress liner because of the difference it has made to her ability to sleep.

"Lack of sleep because of pain and discomfort is a major problem for fibromyalgia sufferers," says Jan. But now she is sleeping "a little longer and a bit more deeply", thanks to the magnetic mattress liner.

"It does not alter the pain," says Jan, 58, who has suffered with fibromyalgia almost all of her life, "but it does make my sleep that bit longer and heavier - and with fibromyalgia any little thing helps."

And Jan has some advice born out of experience on how to use the magnetic mattress liner. Many fibromyalgia sufferers are so sensitive they can actually feel the small magnets enclosed in it. "It''s a bit like ''The Princess and the Pea''," she says. The solution is to put a blanket, rather than just a sheet, over the liner.

In addition Jan has found that the way to get the maximum effect from the magnetic liner is to use it six weeks on and two weeks off.

"Quality of sleep, tiredness, and tiredness on waking were significantly improved"
Dr Mark Atkinson, vice-president of the Complementary Medical Association, supervised the trial of the HoMedics magnetic mattress liner and was very impressed with the findings.

"Although most participants felt that their pain intensity had not significantly improved, most felt that their quality of sleep, tiredness, and tiredness on waking were significantly improved."

Dr Atkinson added: "In view of the extremely positive findings with respect to improved quality of sleep and reduced daytime fatigue, I would suggest a further pilot trial on the use of magnetic mattresses with patients with chronic fatigue syndrome, which is believed to affect up to 600,000 people in the UK alone." HSI will keep you updated on any further trial results as soon as they become available.

1.Shimodair K, The therapeutic effect of the magnetized mattress pad. Obstetrics and Gynaecology, Tokyo 1990

 

[katebar]

Hi Diamondfan I hope I''m not out of line either but this is a product that I have used for my son when he had chronic fatigue and my daughter now takes to boost her immune system. It is imported from England but I find it extremely benefical and is use by lots of athletes as well.
http://www.users.bigpond.com/elagenaustralia/ELAGEN_AND_ELAGEN_SPORT.html

Also Mannetech Ambrotose lots of people swear by this. My DH is a GP and he has loads of patients that say this changed their life in terms of feeling like ''themselves''.
Massage and Bowen technique are also supposed to be very effective
HTH

 

[Odilia]

Date: 9/21/2006 3:29:41 AM
Author: katebar
Also Mannetech Ambrotose lots of people swear by this. My DH is a GP and he has loads of patients that say this changed their life in terms of feeling like ''themselves''.

A friend of mine also swears by that, and just sent me some.

 

[MrsT]

Hi DF:

I am always lurking "Rocky Talk" and was bored tonight so I came to this forum. I was compelled to read about your Chronic Fatigue. Tears are already welling up in my eyes becaue I know how you suffer since I also have it and have suffered with it for over 20 years.

I''ve had a very long journey and can tell you what I think has relieved some of my symptoms. What worked for me might not necessarily work for you but it is food for thought.

First, have you been checked by a specialist for Lyme or other tic type illnesses such as Babesia? While I still have chronic fatigue, and fybro my pain has subsided tremendously because I had Babesia (not sure of spelling but could look it up). Not all doctors do thorough enough testing for these types of illnesses.

Anyway, I had 2 rounds of antibiotic treatments and didn''t feel much better, but over time the pain started to subside and I became better in the area of disorientation. I''m not sure you have that symptom or not. Sounded like you have a lot of pain.

It took two years for my pain to ease. Now I only have periodic pain and it isn''t at all chronic.

I don''t know if any of this helps but I felt if I shared my story it might bring you some hope.

Another very important change during my treatment year was that I lost my job. I didn''t know it at the time but that was a blessing. As mentioned by another poster stress is a major problem for people with this sydrome. Because my stress level was reduced I believe my symptoms got much better. It was a combination of a few things. If I have a stressful period in my life it is a guarantee that I will be in bed for a few days recovering.

I am in no way a 100% functioning person. I actually consider myself disabled but you wouldn''t know it by looking at me.
But...I am no longer in terrible pain. The frustrating symptoms for me are the brain fog. There are many days when my brain goes on strike. I can''t remember anything and I can''t find my words. This is very,very, stressful and tears are welling up again. I have not found relief for this awful symptom.

So, if you haven''t had testing done with the absolute best Lyme doctor you can find in your area or nearby I would suggest it.

I would not hesitate to take an anti-depressant since that does help the muscles. I don''t do well on the drugs myself, but I will take them as long as the side effects aren''t too bad.

This is just my experience and I feel deeply for what you are going through. Feel free to get my email from the administrators if you ever want to talk. I can''t solve the problem but could be a good listener.

To recap: Reduce your levels of stress, make sure there is no lyme/other tic diseases, take naps,take naps, and don''t feel guilty, don''t feel guilty that you can''t excersize but try to do a little walking to keep some muscle, avoid too many carbs, and sugar, and caffeine, and if your doctor prescribes an anti-depressant don''t be embarrassed to take it. look for a support group in your area. I''m trying to do that right now.

Heartfelt regards,
Mrs T

 

[diamondfan]

thanks to all of you for your replies. Nothing sounds totally off the wall, and it is worth trying. I have been checked a few times for Lyme since I live in PA and there are TONS of deer in my yard. Negative on that, and the other thing I have never heard of but I have had tons of blood work done, looking for lots of different things. I did try to medicine from the doctor and had a reaction, up all night in discomfort and feeling funky, so I will tell him it did not help. Now that I am trying to eat better and exercise regularly I think I feel better overall, but do have really bad days still. Add the migraines and stomach issues and some days are just awful. I try to rest and do things to ease stress, but having three kids and a hubby, who thought wonderful, just can''t quite seem to "get" this..."What do you mean there is no test or way to see that this is what you have?!" He just cannot fathom it. I have good help and am blessed that I do, but still, as the mom, I am on duty 24/7 and really stretch myself thinnly. I really appreciate all of the help and words, means a lot to me, and I know that other people suffer from this and various other things, and I can sympathize totally!