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New to boards, in tears from pain.
4 Replies
LourieB - August 25

I personally think the most frustrating thing to deal with is that fibromyalgia is not a "visible" problem. No wounds, no rash, no cast, nothing visible to "prove" you have a problem. If I hear get over it, just deal with, everybody hurts one more time I think I will lose it. It has rained here since last Saturday. It is chilly and damp. Percoset barely takes the edge off the pain anymore. A hot shower helps, but only as long as the hot water is still running. The fatigue is rediculous. I've always been first one up, last one to bed, everything done, multitasking in my sleep. Now ... I come home from work and just want to go straight to bed. Everything has become overwhelming.

I was taking Savella, which really helped. But lately every time I take it, I'm hugging a bucket and hurling. I need suggestions on what to do next. I suspected having fibro for years but doc said I was just stressed. (Duh!) A new doc said absolutely, fibro! Nice to have a name to put to the problem but what about a real REAL solution?

 

Fantod - August 25

Hello LourieB and welcome to the board!

I'm going to give you a crash course on Fibromyalgia (FMS) so that you have a better understanding of what is happening to your body.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation and the Centers for Disease Control and The World Health Organization. OTC remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. If you find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

If you don't want to share this website with your husband, family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

A rheumatologist is the doctor best suited to help you manage your symptoms. There are now three prescribed medications to treat the pain of FMS. You have probably seen the ads on TV for Lyrica. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella was approved for use in the USA by the FDA last year. I'm sorry that you are having problems with Savella. I am not able to take it at all. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. That also includes Splenda. If you require a sweetener, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which can be found right alongside the other sweetners in any decent grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

And finally, the National Fibromyalgia Association website has a list of fibro-friendly doctors available for quite a few states. Not all rheumatologists are created equal. If you feel that your current doctor is not addressing your needs, than get a second opinion. Be sure to take a copy of your medical record and current tests with you to save time and money.

LourieB, I hope that my comments are helpful to you. Please continue to participate on the board. There are a lot of very nice people here who are willing to listen, answer questions and share their experiences. Take care and God Bless.

 

LourieB - August 25

Thank you! On my lunch break today, I am contacting my insurance company about a fibro specialist, pain management etc. to see what I am covered to do. Allydonia -- a tag in shirt feels like a razor blade. I have to cut all tags out of everything. Bra strap doesn't seem to bother me, but the shoulder strap does. Most of my pain is concentrated above the bra strap and up the back of my neck, my arms, my hands ( and I am a legal secretary/court reporter and type way too much ). I have days where my feet are in so much pain it hurts to stand much less have them resting on the floor under my desk.

I tried Lyrica and Cymbalta, they did nothing for me.

I've noticed the weather has an extremely adverse effect on me. Moving from warm sunny Florida to freezing wet New Jersey was a mistake I can't correct any time soon.

Stress is an obvious trigger too. And stress is off the chart lately.

I will mention Vitamin D deficiency to doc and the gluten as well.

 

Fantod - August 25

LourieB - You might want to also investigate Myofascial pain and/or TMJ as a root cause for the discomfort in your shoulders and arms.

I'd also consider a water aerobics program for arthitics which is a very slow pace or Tai Chi for exercise and stretching. The latter could be done at home using a DVD. Tai Chi is particularly recommended for FMS for stress reduction as well as streching.

I hope that you are able to find some relief. Take care.

 

axxie - August 26

Welcome LaurieB

Fibro hurts and when you are sressed, you don' sleep, so in turn the viscious cycle starts.

A good sleeping aid, couple with a good pain reliever does seem better then most antidepressant that are approved for fibro.

Here's a little blurbe on fibro.

Pain, Fatigue, Fibro Fog & More - All Part of Fibromyalgia Syndrome

Fibromyalgia syndrome is a chronic condition that causes intense pain in various places around the body, including muscles, connective tissues and joints, as well as a host of other symptoms. It affects more than 6 million people in the United States.

Doctors classify fibromyalgia as a syndrome, which means it has a group of signs, symptoms and characteristics that occur together.

To make a diagnosis, doctors usually rely on signs and symptoms alone. Complicating the matter, symptoms vary widely from person to person and often, as do their intensity.

Symptoms of Fibromyalgia
People with fibromyalgia frequently hurt all over and feel exhausted all the time. Those symptoms often force you to seriously limit your physical activity. It's also common to have problems concentrating and remembering things. A lot of people with fibromyalgia have symptoms so severe that they have to quit or modify their jobs.

Because fibromyalgia is frequently misunderstood, family, friends, co-workers and even medical providers may not believe the person is actually sick. A proper diagnosis often takes months at the very least, I found people on this board had it for years before they where diagnosed.

Keep in mind that the signs and symptoms vary widely from one person to another. Some people have only a few, while others have many. The intensity of symptoms is different in everyone as well, ranging from mildly annoying to highly debilitating.

Common symptoms of fibromyalgia:
Widespread pain
Chest pain
Morning stiffness
Fatigue
Sleep disorders
Anxiety
Cognitive or memory impairment (“fibro fog”)
Depression
Abdominal complaints
Frequently, people with undiagnosed fibromyalgia don't realize that a host of secondary symptoms are related to the pain, fatigue and other primary symptoms. Keeping a detailed list of symptoms can help your doctor make a diagnosis.

Additional fibromyalgia symptoms include:
Painful menstrual cramps
Vision problems
Nausea and dizziness
Weight gain
Chronic headaches
Skin problems
Muscle twitches and weakness

These lists include the most common symptoms. For a complete symptoms list, see the Monster List of Fibromyalgia Symptoms.

Fibromyalgia Treatments
While a lot of fibromyalgia treatments are available, you'll likely need to experiment with different options before you find what works best for you.

Fibromyalgia treatments include:
Prescription drugs
Complementary/alternative treatments, including massage and physical therapy, chiropractic, and acupuncture
Vitamins and supplements
Moderate exercise, but only if done correctly

Lifestyle changes, including diet, stress management, and pacing
Every case of fibromyalgia is different, and no treatment works for everyone. You'll probably need to work closely with your doctor to custom tailor a treatment regimen that helps you become more functional. Many people benefit from a multidisciplinary approach, which involves several healthcare providers.

Prognosis for People With Fibromyalgia
Fibromyalgia is a chronic condition. While some people do experience long remissions, no one who's had fibromyalgia can truly say they don't have it any more.

As for the progression of the illness, it's hard to say whether your symptoms will get better or worse with time. Because fibromyalgia isn't degenerative, its course isn't clearly established like it is for many diseases.

Some experts say about a third of us will get worse, a third will improve significantly, and the remaining third will stay about the same. Some studies have linked early diagnosis and treatment to better long-term outcomes, but other than this it's unclear what role treatment plays in the progression, or lack thereof, of fibromyalgia.

Fibromyalgia & Overlapping Conditions
As if all this weren't enough, several other conditions frequently go along with fibromyalgia. Researchers aren't sure whether one condition leads to another or whether they have related underlying causes. Becoming familiar with the symptoms of these disorders can help you determine whether you have more than one.

Overlapping conditions include:
Chronic fatigue syndrome
Irritable bowel syndrome
Temporomandibular joint syndrome (TMJ)
Multiple chemical sensitivity
Myofascial pain syndrome
Restless leg syndrome
Costochondritis (chest pain)

History of Fibromyalgia
Doctors coined the term fibromyalgia (fibro –- meaning fibrous tissue, my -– meaning muscle, and algia -– meaning pain) in 1976, but it wasn’t until 1990 that the American College of Rheumatology developed diagnostic criteria. While muscle pain is the primary symptom, research found that nothing is wrong with the muscles themselves. For a time, researchers thought it could be an autoimmune disease, such as lupus or rheumatoid arthritis. Now it’s widely believed in the medical community that a malfunction of the central nervous system (called central sensitization) causes fibromyalgia, leading to new research into treatments and new hope that fibromyalgia will be not only more treatable, but perhaps even curable.

To date, three drugs -- Lyrica (pregabalin), Cymbalta (duloxetine), and Savella (milnacipran) are FDA approved for treating fibromyalgia, but other drug trials are in the works.

Good luck to you and keep us posted on your progress and don't forget there's always someone to answer each other's questions.

 

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