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Fibromyalgia is hard to manage
2 Replies
nicelady - May 19

Hi all,

I am new to this page i have had the above for over 7 years i am finding the condition really hard to manage i never know how i will be from one day to the next. i am in pain all the time i have other conditions as well & they all carry pain as well so at anyone time i have 4 types of pain going through my body. i sleep so much i have to go to bed at 8pm so that i can get up in the morning some days i have to sleep at 6pm in the evening.
can anyone give me some tips of how to manage this condition i was really active but now i am unable to do much i have to walk with a stick to aid my balance as i have problems with that.

 

ptalana - May 20

Hi nicelady and welcome to the forum :)
I would recommend that you read the associated conditions blue box on the left side of screen, and open Chronic Fatigue. Between 20-30 percent of Fibro sufferers also suffer with Chronic Fatigue. This should give you the info that you are looking for. I have the opposite problem, in that I can't seem to sleep much at all.
I do however suffer from extreme mobility issues, I have to use a walker at home, and a wheelchair when I go out. I have been doing a pilates routine for 20 mins daily 5 x a week. I've found this possible as it is done on your back, focusing on your core muscles. This also incorporates a very effective breathing technique that I use to help control some of my break through pain.
Fibro is such a complicated disorder and has so many linked conditions that experiencing pain from so many different conditions is quite common.
You are definitely not alone!
Sorry I couldn't be of more help to you, but I must say that these blue boxes on the left hold a wealth of very helpful info.
Take care, Patty

 

Fantod - May 20

Hello nicelady and welcome to the group!

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. 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. Please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. In addition to chronic fatgue, you may be suffering from depression. The fact that you seem to sleep quite a bit would lead me to believe that depression is an issue. You should try and find someone who has experience in treating chronic illness patients. You can do this by calling your local hospital physician referral service and asking them for a recommendation.

If you don't want to share this website with your family and friends 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. Again, you can call your local hospital physician referral service and see if they can recommend someone.

You might want to try using sublingual B12 with folic acid to see if that helps boost your energy level. It is very important to get something with folic acid included as it helps your body absorb the B12. Sublingual tablets must be used in a specific manner. No eating, drinking, smoking or teeth brushing a 1/2 hour before AND after letting the tablet dissolve under your tongue (no, they do not taste bad). You can purchase this item at any decent health food store or online.

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 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 useful to you in some way. You are not alone. Take care and God Bless.

 

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