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Fibrocurious - September 5

It's nice to find a site where I can communicate with others about this condition. I was diagnosed with fibromyalgia about 9 months ago. I originally thought I had chronic fatigue syndrome. It's been really hard dealing with the fatigue and what appears to be what I call brain fog as I have trouble concentrating as well. Anyone have any suggestions??


Fantod - September 6

Fibrocurious - 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, the World Health Organization and the Centers for Disease Control. Over the counter 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.

If you don't want to share this website with your family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation web site 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.

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. And, a high level of anxiety is also very common. 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.

A rheumatologist is the doctor best suited to help you manage your symptoms and rule out other causes for your illness. There are now three prescribed medications to treat the pain of FMS. Lyrica is one them. 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 (also known as Milnacipran was approved for use in the USA by the FDA last year. Many people seem to have good results with it. 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.

Memory issues or "fibro-fog" are also a common complaint. You could try a supplement called "phosphatidylserine" which comes in varying strengths. This was recommended to me by my nutritionist. My memory is pretty well intact except when I am really affected by fatigue so I only use 200 mg. You could try a higher dose. You should be able to find this item at any decent healthfood store. Make sure that you understand how to use it and any risks associated with taking it.

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. If you require a sweetener, use something made from the nontoxic Stevia plant. Truvia or Sun Crystals are available right alongside the other sweetners at the 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.

Not all doctors/rheumatologists are created equal. If you want to get a second opinion, go to the National Fibromyalgia Association website to see a list of fibro-friendly doctors in your area. Be sure to take a copy of your medical record and current tests with you to save time and money.

And finally, you are not alone. This is a great site for support, information, to ask questions and just vent. I hope that my comments are helpful to you in some way. Take care and God Bless.


Fibrocurious - September 7

Hello Fantod,
You are truly a blessing. I had no idea about all of the information that you just gave me. I am truly greatful.
I was tested for Vitamin D deficiency and it was extremely low so I am taking a vitamin D supplement as well as calcium. I have not been tested for the gluten so I will ask my doctor when I go back in three weeks. I do have a referral to a pain specialist. I am taking cymbalta as well because I could not tolerate the Lyrica. Looks like I have a lot of reading & research to do but I'm glad to find this site and people like you that can give me insight on what I'm dealing with. I have noticed that when I am stressed I have more bad days so I see now why saying "no" is so important. I really have to learn to do this and not overextend myself. Please pray for me that I will learn how to cope with this syndrome.

How long have you been dealing with this syndrome?


Fantod - September 8

Fibrocurious - I was diagnosed just over three years ago. I have some underlying problems as well which contributed to the onset of FMS. I have had TMJ for years, advanced osteoarthitis and the straw that broke the camels back was the onset of degenerative disc disease. L-5 left the building and then FMS arrived. I am completely disabled and can no longer work. I keep busy with an avid interest in genealogy.

I hope that you will find the help that you need. Most of us have had to jettison at least one doctor during the course of treatment. YOu must be your own best advocate when dealing with Fibromyalgia. Take care and keep in touch.


Fantod - September 8

Incidentally, with regards to the gluten test. It is possible to be sensitive to gluten (me) without having full blown Celiac disease. I had no idea that I had a problem with gluten prior to the test.

And, it is very important that the test be done using a stool sample. A blood sample will deliver a false negative more often than not - I don't care if your doctor disputes that fact. I know three people who had the blood work for gluten done and they were all negative. Then they did the stool sample test because they were not satisfied. In all three instances, the test results came back as being completely gluten intolerant. Better safe than sorry and I imagine like most people these days, there is only so much money to go around. Take care.


Fibrocurious - September 12

Hi Fantod,
I'm sorry to hear that you are totally disabled. sounds like you are dealing with a lot and I will keep you in my prayers. I have an appt. with my PCP on the 30th so I am going to request the test via stool sample. Hopefully, she will be in agreement. I have a calcium deficiency they say relating to my hysterectomy in the 1990's and I have to get annual intervenous drug therapy and take daily calcium supplements. Have you had any problems relating to calcium issues. I'm also taking a high dose of Vit.D, flaxseed oil and Vit. B. Have you had to take any of these things to help you? I also have a really busy schedule with work, school and taking care of home. Any suggestions on how to get in some relaxation during the day? When reading up on this syndrome it appears that relaxation and exercise are really key to helping me with the pain. On another note, is it really hard to get disabilty with this condition. Some days I really wonder if I'm going to make it at work due to the memory issues. I have an appt. next week with my physician that prescribes my anti-depressent medication. I plan to speak with her about this...any questions you can enlighten me with to ask during my visit?
Take care of yourself and stay in touch. I hope you don't mind that I bounce things off you as I'm learning.
Fibrocurious .....


Fantod - September 18

Fibrocurious - I've been away for a week and just saw your post. Probably too late but I'll tell you anyway. Feel free to bounce any questions you may have off of me, I'll do my best to answer.

Yes, I do use Vitamin B but in a sublingual form with folic acid. Folic acid helps the B to absorb better and is a very important addition. Sublingual medication must be used in a specific fashion. No eating, drinking (anything), smoking or teeth brushing a half hour before or after use. The tablet simply dissolves under the tongue. They don't taste bad. I keep mine on my bedside table and use one to give me a "push" to get out of bed. And then, I use it throughout the day depending on how much activity I have to manage and how I feel.

I was using flax seed oil as recommended by my nutritionist. I use a mix of holistic and conventional medicine. One of my doctors suggested that I take specific test to try and sort out my sensitivities (multiple with medication). I took the ELISA/ACT test (you can find it online) and it turned out that I am extremely allergic to flax seed, a variety of food preservatives and green food colouring. These items were triggering my immune system but not giving me any overt symptoms like rashes. At the time, I had pretty severe pain in my legs. My shaving gel had D & C green #5 food colouring in it. Once I stopped using it, my leg pain improved. As I have said before, FMS is an extremely complex syndrome and this would be a perfect example.

With regards to disability, I would recommend Allsup. They are disability claim experts with a 98% success rate. I used them and was approved in 6 months. They take 25% of your back pay which is a standard fee if they win approval. If they don't, they take nothing and will help you appeal. Allsup does all of the paperwork for you and they are extremely nice to deal with. I would not recommend seeing a lawyer to do this. People wait years for a hearing in front of a judge who could care less. Using Allsup is a much more expeditious process. I also know someone else who used them with the same results - approval in 6 months. You can find Allsup online. Register and they will contact you to set up a telephone interview to see if you may qualify. If you want to know the approximate amount of the benefit that you would receive monthly, look at the Social Security statement that you receive periodically from the government. You can also go online to the Social Security Administration and find out. Incidentally, it is very difficult to get disability for Fibromyalgia alone. The underlying conditions such as depression, anxiety etc are key to getting approval.

Relaxtion with Fibromyalgia is very important. I have tried meditation and had some success with that. Tai Chi which can be done at home is recommended for FMS. It is a slow moving exercise with medatative qualities. You can find a DVD and work at it anytime. Just stopping to take some very deep breaths (that move your stomach) periodically helps - in through the nose and out of the mouth. Walking or simply carving some time out to do something that you like is all helpful.

I think that covers everything that you asked about. Enjoy the rest of the weekend.



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