Recently Diagnosed
Crayde - Sep 24th, 2009 9:32 PM
[ Original Post ]

Hi

I have recently been diagnosed with Fibromyalgia by a rheumatologist, I know little to nothing about it, except for the fact that i have had chronic pain in my neck back and various other places for in excess of 2 year.
I am atleast happy with the fact that i now have a "name" for what is wrong with me and something that i can treat.......
But that is where it end, because i am still in Pain all the time and i have 4 children ranging from 12 months to 13 year that require a mother that can get through the day with out being soooo sore all the time.
The Rheum... gave me Endep to try (did nothing) and i hgave been on panadine forte for several months and although it relieves the pain a little it is certainly not nailing it.
I am going back to the GP today, as he will be managing it, but i really want my sleep and quality of life back.
Any support or advice would be much appreciated.
Thanks :)

Comment


 

Fantod - Sep 25th, 2009 12:03 AM

Hello Craydie and welcome to the group. There is a lot of good information on this site. Take some time to throughly read all of the information in the blue boxes on the lefthand side of this page.

I guess that I will give you the Readers Digest version of Fibromyalgia (FMS). It is a disorder of the central nervous system that causes widespread chronic pain and a host of other "perks." The mechanism that causes it is not understood. FMS is recognised by the National Arthitis Foundation and the Center for Disease Control. There is no cure but it can be managed.

Only certain classes of prescribed medications work for FMS. OTC remedies do not, so don't waste your money. The most popular choices for managing FMS are: Cymbalata, Lyrica and Savella.
Cymbalata addresses the pain as well as the depression that usually accompanies FMS. I use it myself and it is effective. You see TV ads for Lyrica all of the time. The most common complaint seems to be rapid weight gain. Savella is new to the US market this year. It has been used in Europe for decades. I am not aware of any major side effects as the drug is so new to the US.

The reason you are so sore is due to your deep sleep cycle being interrupted by FMS. This would be one of the "perks" I mentioned earlier. During deep sleep people with FMS experience short bursts of intense brain activity. If your muscles do not get deep sleep to help repair themselves from the days activities they become very sore. The medication usually prescribed for this issue is Amitriptyline. Rest is extremely important for people with FMS. You will have to learn how to say "no" and not feel guilty about it. Breaking up your errands, chores etc will be necessary in order to live with this syndrome. Paybacks are hell when it comes to FMS. Take it from me when I tell you that over extending yourself is just not worth it. It can take days or even weeks to get over one day of exuberance.

Diet is very important too. Avoid deep fried foods, lunchmeat (nitrates) and anything that has an articial sweetner (including Splenda). All of these items will probably increase your pain level. If you need a sweetner, use Truvia which is made from the Stevia plant and is not toxic. It can be found in the grocery store right along side the Sweet and Low etc.

You are going to have to be your own best advocate when it comes to managing this syndrome. There are still plenty of doctors out there that either don't believe it exists or for whatever reason will not treat it properly. Knowledge is power and learning all that you can will give you some sense of control. It takes time and a lot of tinkering to get the right combination of medications and dose that will work for you. If you have further questions or concerns, please let us know. We are all here to help. Take care and God Bless.


Crayde - Sep 25th, 2009 3:49 AM

Thank you sooo much for the info and advice, i have been to the doc today and he has changed me on to cymbalta today so i guess we will see how that goes.
I reside in Australia, but i have not been able to find alot of information or ANY support groups for that matter, which is how i stumbled upon ths site - thankgoodness. I have had a good read through the different sections, and as you said, knowledge is a very powerful resource.
I also went to the Chiro today, he was very helpful too and gave alot of advice in regard to diet, exercise and vitamin & mineral suplements and also a new pillow, apparently it could really help, so we will see how it goes!!
He also said that 1 in 10 of his female patients suffer from FMS so it is alot more common than i thought.
Anyway Looking forward to getting this all under control. Thanks again for your support.
:)


Fantod - Sep 25th, 2009 7:48 PM

Crayde - I'm glad the doctor put you on Cynbalata. It can take up to 2 weeks before you might notice a difference. Also, I am very concerned that you were not given anything to help with sleep issues. This is a crucial part of treating Fibrmyalgia (FMS). If you don't want to take a sleep medication because of your young children, you might consider melatonin. I use a mix of homeopathic and conventional medicine because I am very sensitive to meds.

If your doctor did not address the importance of your ability to get restorative (deep) sleep than you need to see them again right away. There is no way that your muscular pain level is going to subside until this is addressed. Honestly, if these health care professionals had to spend a day in our skins, they'd be a lot quicker to treat FMS more throughly. You've made a good start with the Cymbalata.

If you do decide to try anything homeopathic, make sure that you understand how to use the medication and any risks associated with it. Take care and enjoy the weekend.


Crayde - Sep 29th, 2009 2:49 AM

OMG I am in soooooo much pain at th emoment, my neck, shoulders, back, wrists and elbows are sooooo sore. I have done as the dr suggested and been weaning myself of the Endep and i will be able to start on the Cymbalta tomorrow night. But I was on AD prior tpo being weaned off them on the the Endep (which did NOTHING) and now being weaned of the Endep onto Cymbalta, so i am finding it EXTREMELY difficult to cope at the momenmt, I do have a loving and supportive hubby but OMG no-one and nothing can take this pain away and i am OVER IT. how long will it take for the Cymbalta to work??? What am i suposed to do in the mean time??? Sorry for the whinging but geez :(



Fantod - Sep 29th, 2009 9:58 AM

Crayde - Sorry to read that you are so uncomfortable right now. Have you tried a sports cream to see if that helps with the pain abit? Unfortunately, there is no accurate way to predict how long it will take the Cymbalta to take effect. Some people notice a difference immediately and others can take up to 2 weeks. Not what you want to hear I'm sure. Things will ghet better. You are not alone. Feel free to vent and we will try to help you throught this. Take care.


Crayde - Sep 30th, 2009 5:35 AM

Thanks Fantod - Last night i got an emergency appointment at my dr surgery, who in turn got me in first thing this morning with my doc. Apparently everything that i am feeling is "normal" particually when going from one medication to another.

The Doc has added some sleeping tablets int the mix so i am HOPEFUL that i may get a decent night sleep tonight which may assist me to manage a little better??? I can start on the Cymbalta on Saturday, so fingers crossed that it works rapidly, I have an app back at the docs next Tuesday so i guess he is hoping to see some difference by then too.

Thanks for listening (reading) to me vent.


Fantod - Sep 30th, 2009 8:30 PM

Hi Crayde - I'm glad that you got in to see your doctor to put your mind at ease. I know that this is a tough time and it seems like the misery will never end. It will once the Cymbalata gets into your system. In the interim, be good to yourself, try to rest, and use a heating pad and/or an ice pack if you think they may help. Some people swear by a long hot shower or a soak in the tub. If you need us, we'll be here to listen. Take care.