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newly diagnosed
9 Replies
kiwiang - December 30


well after reading a few stories on here I hope that someone may be able to offer me some advise.
I was diagnosed about 6 weeks ago but have been experiencing all of my symptoms for about 3 years now.
Basically it all began about 6 weekes after I had breast implants,I suffered a panic attack,had what I thought was a bout of gasrto then it all went downhill fast,sensitivity to weather,tingling(lots of it)muscle twitches,major muscle pains,back and neck stiffness,anxiety,no sleep,tinntius,sensitive to sound and lots more....this continued until my gp said all it was WAS anxiety and take 2 weeks of valium see what happens guess what I got better so it was then onto lexapro for 12 months and life was great ecxept still minor anxiety (but at least I could now leave the house)and 12kg of weight gain,now about 3 months ago I decided the weight gain was depressing me so gp took me off it,great for about 6 weeks,then BOOM tiredness,anxiety all came back,aches(really bad in the hands??)sought a new gp and imagine my relief to find a caring gp that tells me NO you have fibro and also you have had glandular fever recently..(probably at the onset)she put me on cymbalta and that ruined 4 weeks of my life I was so sick (and had a massive panic attack)so wants me back on does anyone know of an anti anxiety that does not cause weight gain (cant take effexor,cymbalta or zoloft)
the aches and pains in my neck are bad again as is a new ache in my hands(no swelling)I have been retested for RA,but basically am told I am healthy
as all tests keep coming pack negative(I do have pernicious anemia...levels after 3months were 200 so getting more frequent jabs to get up again)sleep is almost non existant to...:(
sorry to spill my life story out but its great to find somewhere to share it (and my gp recommended it)....thanks for any advice....



I take Celexa and I haven't experienced any weight gain. I do believe almost ALL anti-depressants have weight gain as a side effect. What I was told is that it works on the part of your brain that tells you that you are full. If you are aware of how much you eat, I WAS TOLD that you shouldn't gain any weight. But that was a doctor and you know how they can be...
But again, I haven't had any problems.

I also have Generalized Anxiety and Depression Disorder and the Celexa seems to keep it at bay most of the time... I do have ativan for a quick answer if I feel too tightly wound..

Does sound lik you are going through a lot of the symptoms of Fibro. Have you been to a RHeumatologist? They can assist in getting you properly diagnosed and also properly treated.

I have a mixture of meds to help me out. I have pain meds to assist with the crippling pain of FIBRO. I am also on Ambien as a sleep aide. The first couple times I took it, I felt really wierd and didn't like it. NOw I am used to it and it does WONDERS for my sleep.

Keep us updated on what you find out from your doc. But definitely talk to someone that can help. The longer your pain cycle and flare up is, the worse it can be and DEF harder to get back to what OUR NORMAL is...

Hang in there!


Stacey373 - December 30

Hi ang - I take Lexapro and I haven't had any problems with it. I've been slowly gaining weight all year long, but I'm pretty sure that is because my thyroid is out of whack. Have you had your thyroid tested? Just curious if that might be why you gained weight and not the Lexapro. usually when people say they can't take any anti-depressants, I tell them to try lexapro. I'm very sensitive to those kind of meds too, and Lexapro is the ONLY one that I can take. Sorry I can't help you with that one.

As for the meds you SHOULD be taking for the should be taking a prescription pain medication, sleeping meds, an anti-depressant is very important too, and then neurontin (gabapentin) for nerve problems and muscle relaxers (especially for neck problems).

A Pheumatologist is the best doctor for you to see...but I've only been seeing my regular doctor since being diagnosed 2 years ago and so far, she's done a good job treating me.

Consider yourself one of the "lucky ones" for getting a diagnosis fairly soon. a lot of us have gone years....I went at least 10 years with everyone (including the doctors) telling me it was all in my head!

If you haven't read it already....look for Fantod's "crash course" on Fibromyalgia. that will explain everything you are going through and hopefully help you to better understand what your body is doing and what it needs. Take Care, Stacey :o)


Fantod - December 30

Ang - Welcome to the board! In reading your post, I feel that you really don't have a very good understanding of how to deal with Fibromyalgia. So, I am going to give you a crash course which may clear up some of your questions and help you cope.

Coincidentally, we have another member who is also new (Karkel) that had breast implants. She has since had them removed and has other underlying problems in addition to FMS.

Fibromyalgia (FMS) is a disorder of the central nervous system which 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. OTC remedies do not work for the type of pain associated with FMS.

Fibromyalgia is recognised by the National Arthitis Foundation, the World Health Organization and the Centers for Disease Control.

Take some time to read the information in the blue boxes on the lefthand side of this page. There is a lot of good information there. Knowledge is power.

The doctor best suited to treat FMS is a rheumotologist. Have you been tested for a Vitamin D deficiency? This is done with simple bloodwork. Another option is gluten sensitivity. The most accurate result is obtained using a stool sample. Either of these issues will also cause widespread pain.

The three prescribed medications used to treat FMS are Lyrica, Cymbalta and Savella. Cymbalata is an antidepressant which addresses both the pain and depression that usually accompanies FMS. It is unfortunate that you are not able to tolerate it. Lyrica is advertised on TV all of the time. Some people experience weight gain with this drug. Unfortunately, most doctors do not seem to be proactive about trying something else when this problem becomes apparent. Savella (also known as Milnacipran) is the newest medication used to treat FMS. It has been used in Europe for decades and was approved for use in the USA in March of 2009.

With regards to being unable to tolerate medication, this is a common problem. People with FMS often have multiple chemical sensitivities. Your doctor should have suggested having your medication reformulated by a compound pharmacy in a lower dose to see if that works for you. There are compound pharmacies everywhere. If one is not convenient to your home, the script can be faxed or called in and the meds mailed to your home.

One of the reasons that you are so sore is lack of restorative sleep. 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. You should be on a sleep aid. Amitriptyline is usally prescribed for FMS patients. Addressing the sleep issues associated with FMS is a crucial part of treatment.

We all have family members or friends who don't understand FMS. Pain is subjective. For some people, if they can not see it than it must not exist. I'd like to recommend a couple of options in this regard. Go to Amazon and order "Fibromyalgia for Dummies." Like all of the Dummies series, it contains good basic information. Read it yourself and pass it along to friends and family members. You can also go online to the National Arthitis Foundation website and use the "search" function to find the information on FMS. Send people a link so they can learn about your condition.

Diet is very important with FMS. If you use anything containing an artifical sweetner (including Splenda) get rid of it. If you need a sweetner use something made from the nontoxic Stevia plant. You can find Sun Crystals or Truvia in the grocery store. Deep fried foods, lunchmeat and red wine (nitrates) will also ratchet up your pain levels.

If you are having problems coping with your illness, I'd like to gently suggest that you consider seeing a counselor for extra support. Ideally the counselor should be someone who treats people with chronic illness. Many of us see someone to help us cope with FMS. Call your local hospital and ask for the physician referral service. They should be able to match you up with a counselor who uses cognitive behavior therapy to help chronic illness patients.

I'm sorry you've been through so much already with this infernal syndrome. I'm not suprised that you had infectious mononucleosis (glandular fever). FMS is an auto immune problem which makes us very susceptible to other illness.

For muscle twitching and cramping you could try Malic Acid. It comes in capsules and is available at any decent health food store. For breakthrough pain try Curamin. This a spice which is highly purified for this application. It comes in capsules too. I use it twice a day for breakthrough pain (I have underlying conditions in addition to FMS). Have you tried a muscle rub or moist heat on your neck or hands?

Pernicious anemina is one of the many "perks" that can be associated with FMS. Have you tried using sublingual tablets of B12 with folic acid? The folic acid is very important as it helps the B12 absorb. In the event you are not familiar with how to use sublingual medication: place the tablet under the tongue and let is dissolve. Do not eat, drink, toothbrush or smoke for a half hour before AND after. I'm having a problem with my vitamin D levels right now and switched back to a sublingual tablet. Incidentally, they don't taste like anything.

I know how frustrated you are with all of this. I feel like an ongoing science project most of the time. You've come to the right place. We have a good group of people on this board who will step up to answer questions and lend support. If you are on Skype (Internet phone provider) we can talk one on one. This is the latest brainstorm of one of our other members (Noca).

I hope that my comments are helpful to you in some way. You are not alone and we welcome your participation on the board. Take care and keep in touch.


kiwiang - December 31

thankyou all so very much for your comments and reply to a few comment:
I have got fibro for dummies and read anything I can get my hands on but try not to look at the net to much as its can be misleading at times.
I am going to go back on the lexapro,it took 12+months for the weight to go on but I also did not excerise alot at the time ...maybe if I am aware I will watch it more....on lexapro I slept well and had no pain and minimal anxiety (to the odd valium if needed) my doctor said at least we know it works and minimal side effects(except withdrawel that was nasty)
I did 6 months of therapy but this was treating anxiety as my illness, will do this again if needed as go has suggested it.
I am seeing my gp in about 4 days for RA results,but these were done before xmas so think I would have been called if anything showed,
with pernicious anemia sub linguals do not work,I even had some sent from america as we only get one type here,I find an injection easiest-best for me I just battled to get more than once every 3 months(new gp bit more open to giving more)
I took a sleeping pill last night and although I only had about 7 hours they were a good solid 7 hours and my pain is alot less thats for sure,just achey buy I did also exercise yesterday(I cant give that up as I have worked hard to get fit) I shorten the workout if my body asks me to....
I live in a small country town and specialists are not close,my wonderful new female gp that believes in fibro and treats alot of people here with it she seems very compatent and I have total faith that she will help me (more than the 10 others i have seen thats for sure)
I will take all these medication names to my gp next week and will post an update then,
again thanks for all the advice
and a happy new year to all,


aseid5 - December 31

Hello to all. I am new to this forum. I am so very sorry that all of you have these issues to contend with. Let me explain my husband's story and maybe this might be helpful to you all. My husband suffered for almost two years before finally just recently receiving a diagnosis of Fibromyalgia. However, the prognosis was made by a Neurologist who said he understood this.......but not really a good treatment plan was given. Fininally, my niece's mother has Fibromyalgia and gave an excellent doctor referral who after seeing so many people suffer with pain opened his own Pain clinic and truly truly understands Fibromyalgia and Myofacial pain and all of the associated symptoms and syndromes affiliated with this. You fill out a form with all of the symptoms and answer a lot of questions and then the doc reviews and he will go over everything and will talk with you to the point to where you don't even have to try to remember the right questions to ask, etc. The doc checked my husband out from head to toe and along with the tender points there are knots in muscles throughout his body and when the doc pushed into each of these particular knots, it radiated the same kind of pain that he had been experiencing. There are knots in his chest and mid back that was causing the chest pains and breathing issues that led to lung doctors and heart doctors. There are knots in his low back that were radiating pain down his legs that neurologist thought may be coming from a couple bulging discs and so on and so on. My husband has widespread pain all throughout and when we go out somewhere after 15-20 minutes of walking, he is suffering. The new doc that my husband is seeing is so wonderful and has a good treatment plan and is giving little bits at a time for him to do and eliminate such as with dietary changes and massage and stretching. The doc gave a small rubber ball for massaging gently into the knots to get them softer so stretching can be done and if the ball alone does not work then trigger point injections can be put into the knots to help ease pain and then stretching can be done to help get the knots out. In regard to dietary changes, the doc wants him to eliminate pop and high sugary foods, etc. as the sugar (including artificial sweetners) can aggrevate the pain, also wanting him to try to stay away from wheat products (gluten free diet), there are other things as well. But with all of this said, a good doctor is highly needed along with support from family and friends, and even though it may be hard at first the dietary changes and lifestyle changes and yes stress is a big key factor as stress can highly aggravate the pain. This is a central nervous system issue and with the right treatment, some people can overcome this but many it is only managing it to a comfortable level. Each person is different. I am hoping that with this new doc for my husband, that he can finally at least have the pain more manageable to where it is not so severe if not all the way gone. I hope that all of you can find a good doc with a good treatment plan. I have heard too many docs saying all a person needs to do is just exercise and stretch (they all kept saying that about my husband - even the family doc) but there is more to it. You cannot stretch and exercise until the knots in the muscles become smaller and softer or else this will cause more and more pain and then the other things can follow to help. I hope my comments are helpful. Sorry so long.


aseid5 - December 31

I forgot to mention some helpful medications in my last comment. My husband takes Lyrica 3 times a day to help with pain, also a narcotic pain reliever as needed, and Flexeril muscle relaxer (half at a time during the day due to tiredness and then hole one at night to help with sleeping). This was given to him a while back but the new doc states that these won't work as well if do not eliminate or at least highly minimize sugar intake as sugar aggravates pain and interfers with medications.


kiwiang - January 1

hi, I think you need to start your own thresd for your story as posting on mine it may not be seen(I am new here to)
regards ang


aseid5 - January 1

Sorry, I thought it might be of some help to you with some information. I hope things get better for you.


kiwiang - January 2

hi so sorry I thought you were posting your story not replying to mine...thankyou I have just read it and I found it helpful



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