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Finally some answers
5 Replies
jennilynn - September 2

Hello, I'm new here. Been having pain in my legs, shoulders, migraines, etc. for YEARS. Medical discharge 10 yrs ago from the Marines due to hip pain/bursitis, since then, agony in my legs, feet... you know.

Finally yesterday my new rhuematologist said Fibromyalgia... so I'm learning what i can to try to relieve some pain. All I know is I'm aching and tired and somewhat bummed. I'm 34 and have pain to look forward to for the rest of my life?? ugh!!

jen

 

Noca - September 2

Welcome to the board! Pain can be managed with the right pain management. I suggest seeing a pain management doctor on top of your rhuematologist. Have them work together to treat your pain and help break the pain cycle.

 

Fantod - September 2

jennilynn - 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.

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. 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.

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.

I have a bursitis so I know how painful it can be to live with. One thing that I found that does help is eating fresh pineapple. It contains an enzyme that breaks up bursitis. If you don't like pineapple you can get some capsules from the health food store that contain the same enzyme. As you probably know, bursitis is nothing to be ignored and a flare should be treated promptly. I have also used a derivative of the pitcher plant called Sarapin to relieve pain. It does not cause tissue damage like repeated injections of steroids and is every bit as effective. Bursitis, and tendonitis are both very common among people with FMS.

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.

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.

I hope that my comments are helpful to you in some way. You are not alone. There are a lot of good people on this board who will listen, try to answer your questions and see you through a bad day. Good luck and God Bless.

 

toots2889 - September 4

Welcome Jen,
The biggest gift here is to know that your not alone, and you become part of another family. I wish you all the best, and keep us posted on how your doing. If you need to vent, please dont hesitate as weve all done it.

 

chucksusanandgrace - September 16

Do you have a homeopathic method to help with the burning sensation that people with fibromyalgia can get. I have been offered neurontin by at least 3 different physicians, but I am not comfortable taking it.

I'm wondering if anyone can share their thoughts/ideas of what might be helpful.

Thank you and God Bless!

Susan

 

chucksusanandgrace - September 16

Oops,sorry I meant to post this on another site.

I don't think you have pain to look fwd to for the rest of your life. There are a lot of things that can be done...so much research out there and wonderful support groups (forums and one you can personally attend).

You will be just FINE, I promise!!

Hugs

 

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