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I am getting nowhere
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Frustrated - June 24

I was diagnosed with FMS and an autoimmune what who the hell knows, jorgensons disease with a possible overlay of scleraderma...never been treated for either of those, my liver and kidneys are perminantly enlarged and sore as is everypart of me... I have been tested for Rhuematoid Arth. and all come back negative and xrays show no signs of it.. i keep getting referred to RA specialists i cant afford.... I have been perscribed 1200mg PANADOL OSTEO 3 x a day, i cant take endep it makes me hostile, senequin knocks me out for over 12hrs and leaves me groggy and takes 3 cups of coffee to function....i dont sleep more than 3 hours sound and that in itself is rare, and i am at the point where i take pot luck in the food i eat as to whether it will agree with me or not....beyond frustrated...has anyone had any success in finding relief?

 

Pikespeak - June 24

Hi Frustrated! I was put on Ambien (for sleep) the same day I was diagnosed (about a year ago). I have done very well with it, and it doesn't make you groggy in the morning. Just take about 1/2 hour before you plan to sleep. Allow for 8 hours! A good sleep won't remedy everything, but it does make a difference!

 

Fantod - June 24

Frustrated - Welcome to the board!

Do you mean Sjogren's Syndrome which is an auto immune disorder and pretty serious? It can be common for people with Sjogren's to have Fibromyalgia (FMS). My best friend has both.

What type of doctor is treating you? Panadol is not going to address the type of chronic pain assoicated with FMS. Only certain classes of prescribed medications work and they are typically anti-depressants. The three primary medications used to treat FMS are Lyrica, Savella and Cymbalta. If you are not taking one of these, I'd be demanding to know why. There are also some homeopathic remedies that are fairly effective too.

And, a critical part of managing FMS is overcoming sleep problems. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. For sleep you could try something natural like Calms Forte or Melatonin. You can find them at a health food store. My point is that you have to take something or your muscle pain will only continue to get worse.

It takes time and a lot of tinkering to find the right combination meds to give some relief. A key point to remember is that the longer a chronic pain cycle continues, the harder it becomes to manage or stop. Nothing is going to work right away. And like most of us, you may have to change medications several times to find something that works. Hence the need to ask for samples.

I have to wonder about the Sjogren's diagnosis as you don't seem to have RA. It is my understanding that RA is usually one of the "perks" associated with it. If you use Google, you will find a link for the Sjogren's Syndrome Foundation.

Unfortunately, I think that you need to start over in the physician department. You could use the Internet to find the National Fibromyalgia Association website. They have a list of fibro-friendly doctors for each state. Or call or go online and see if your local hospital physician referral service can match you up with a new doctor.

And finally, my best advise to you is to get educated about your health issues. Knowledge with action is power. You'll feel less out of control by understanding what you are dealing with. The Sjogren's Foundation has publications available and their website is quite good. You could also go online to Amazon and order "Fibromyalgia for Dummies" which has very user friendly and basic information about FMS. You are not alone. Take care.

 

January - June 24

Hi frustrated - I agree with fantod and pikespeak. There IS hope, and you CAN get better - but you have to educate yourself, find a knowledgeable doctor who listens to you; TELL him if you feel bad, and change medications until you find something that works well. Write down the names of the diseases and drugs and use the google bar to search the internet for information. Not everything is correct, but you will find enough to get started learning about this. It's up to us to learn about our conditions.

A couple things you mentioned - food problems - not clear what they are? Some of us have food allergies and staying away from certain foods is an important part of feeling better. (I read an article and figured out I have celiac disease - an auto-immune disease triggered by cereal grains and flours. None of my doctors picked up on this. The gluten free diet REALLY helped me feel better!) But some of us have different allergies, so you might want to ask your doctor to get tested for them. Some of the more common foods that cause allergies are tree nuts, wheat, eggs, soy, fish, shellfish, etc. You can google for information.

If you mean Sinequan (?) that is a tricyclic antidepressant. These drugs are necessary for severe depression, but in my opinion are vastly overprescribed now for other things. They come with many side effects that patients aren't warned of. It is in your best interest to get the correct spellings of any drugs you take and do your own research online - and I mean read a lot of different websites. Don't just trust the big drug company website to tell you everything. Read the forums and see what other people write about their experiences. At the right, you can click on a forum on "fibromyalgia drugs."

Endep is another tricyclic antidepressant, also called amitriptyline. Again, read up on this. If you are feeling as bad as you say, you need to talk with your doctor and switch to some different medications that agree with you.

Another note, if you don't do well on tricyclic antidepressants, you might not do well on the "FDA-approved" fibromyalgia drugs either -- Savella and Cymbalta are both SNRI antidepressants and Lyrica is an anticonvulsant that also works on brain chemicals (in this case GABA). For some of us, the antidepressants cause a lot of problems - ranging from manic behavior to compulsive behavior or worsening depression, or hostility (as you mention). So make sure your doctor knows exactly how these meds affect you and work with together to find something you can tolerate. Wishing you lots of luck with this. Just hang in there, it will get better when you find the right treatments for YOU. There are many other options for treating pain and sleep besides antidepressants.

 

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