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Having a Rough Time...Need Suggestions!
5 Replies
teacherceo - February 8

I am a 30/f who was diagnosed with fibro in 2003. After that I went through a really bad spell...had to stop working, couldn't really do anything, and actually ended up in a wheelchair for a while. My doctors (in my opinion) went a little crazy with my meds and when it was all said and done I was on 26 different medications/treatments and was seeing 4 different doctors (a rheumatologist, a headache specialist, a pain specialist, and my general physician). Eventually I had just had enough of all of it and went off of all of my meds within a one month period (not the smartest idea). The Fentanyl withdrawal was enough to put me in the hospital! I will never do that again.

Two weeks after going off of my last drug I found out I was pregnant. I had a beautiful, healthy boy. Eight months after I had him I became pregnant again. I went through both pregnancies and the period of time between them without any trouble at all.

Now, 9 months after the birth of my second child, I am having a really hard time again. I started noticing some fibro like pains creeping up a couple of months ago, but I just ignored them. Now, though, it is as though every day that goes by brings a new sense of pain with it. I am really starting to get scared. I had such a hard time before and I just don't want to go through that again! Because my doctors were so big on meds last time I am really hesitant to start any this time. I know I should be open to trying them to a degree, but I just really hate to go that route. My current doctor (I no longer see any of my old docs) is really fabulous and has recommended that I start Cymbalta. I am still breastfeeding my 9 month old, so that means I will have to wean him early, and I am just not sure the benefits will outweigh the negatives!

Currently, I am having pain every time I breathe. When my chest expands and contracts I have a dull aching pain and then a stabbing sensation in the middle of my chest. I also have a lot of pain in my pelvis area. These pains are the ones that are there all the time. I sometimes catch myself holding my breathe because it hurts so bad for my rib cage to move.

It's amazing how alone fibro makes me feel. I tend to pull away from my family and friends and want to hide my pain from them. I don't want to be that way this time and am determined to be open and honest about it this time. I am sure that I need to be more open minded to starting a medication. Anyone have any suggestions/understand what I'm going through here? I felt so wonderful for two years...it is hard to be facing this again.

 

Fantod - February 9

Hi teacherceo - It is possible for Fibromyalgia (FMS) to go into remission for a while. I've never had that sort of luck. I have to very ocassional day (like once a year) when I feel good. It is like an out of body experience but never lasts.

I think that you really need to be proactive about the pain issues. Once a chronic pain cycle starts, it is much harder to manage or stop. I know that you are still breast feeding but in this instance your health has to come first. Afterall, how will you manage two young children if you let things get as far as they did the last time?

Go the the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly doctors in your area. Find some new ones and get thee to a physician who is well versed in FMS.

By the way, have you been tested for a vitamin D deficiency? This can be done with a simple blood test. Vitamin D problems seem to run rampant in people with FMS. You might also want to consider a test for gluten sensivitiy. The most accurate test is done using a stool sample. It is entirely possible to be sensitive to gluten and not have Celiac disease. I just found out I am mildly sensitive to gluten. Either of these problems can cause widespread pain.

People with FMS should never use anything that contains an artifical sweetner. If you need a sweetner use Truvia or something made from the Stevia plant which is nontoxic. You should also avoid deep fried foods, and lunchmeat (nitrates) which may also increase your pain levels.

You are right to be cautious about going back on medication. I think that the amount of medication that you were on before is appalling. But, you should NEVER stop taking any medication without consulting a doctor. For example, if you start Cymabalta, you have to be weaned off of it.
However, you do need to be open-minded about prescription medication. I use a mix of holistic and conventional medicine. I find even though that I take low doses, the prescription medication does a much better job of managing my symptoms.

Ask your doctor about Savella. This drug has been used in Europe for decades. It was approved by the FDA for use in the US last year. I tried it myself and after 3 days felt much better. Unfortunately, I am extremely sensitive to medication and ultimately had to go off of it. I was so disappointed. At the moment, I'm using a low dose of Cymabalta which handles both the pain and depression that usually accompanies FMS. It works well but nothing is completely foolproof when it comes to FMS.

One of the reasons you could be sore is from 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. You need to figure out a way to get more restorative sleep. This is a critical part of managing FMS. You should be on a sleep aid like Amitriptyline.

I'm sure you are pretty demoralized facing this whole mess again. Go to Amazon and buy the "Fibromyalgia for Dummies" book. It is a decent guide and you can lend it out to friends and family members. You can also share this site with them or the National Arthtis Foundation site has info on FMS (use the "search" function to find it). You are not alone and we will all try to give you support and answer your questions. Take care.

 

Fantod - February 9

I forgot to mention that your chest pain is probably Costochondritis. It is common among people with FMS. It is very painful and can be alarming because people think that they may be experiencing some sort of cardiac problem. Take care.

 

Canada17 - February 9

During my pregnancy was the first time in my life when I didn't feel sore and achy all the time. I think that is because of the hormones that are released during pregnancy to help our body move and grow with the baby.

Fantod is likely right about your chest pain, I suffer from it too. I was able to remedy the pain by practicing better breathing. We tend to take shallow breaths with our chest moving in and out, shoulders moving up and down. We should be breathing with our bellies. Make sure your belly moves in and out when you breathe, your shoulders shouldn't move up and down, and you should be able to minimize the chest pain.

I've been conscious about it long enough that I rarely have that gripping pain in the center of my chest that makes me lose my breath.

 

shir2199 - February 16

hi, I'm new too this , I was diagnosis with fibromyalgia about 4 yrs ago and have had it for about 10 I didn't know what was happening to me I went to drs and was told every thing in the world it has stolen my life. I didn't have ins. and I was forced to quit my job and take my social security at a big lost but it was the only way to pay rent. 3yrs ago I went to the neurology & neuroscience center of ohio I was given some meds to take and was monitored closely I could tell right away that I had the real meds because of how I felt. at that time it was not on the market and had not been fda approved so in the mean time I've been given all kinds of antidepressant pills that only made the pain worse. The meds have been approved in oct.2008 and I now take those. they are called LACOSAMIDE. Most drs don't know about it because its so new. I feel alot better there is no side effects. because of tending bar and being hairdresser I also have nerve damage on my right side a test I took that cost 895.00 All the dr said was yep, you have nerve damage I feel that that is what is causing so much pain now .

 

rhapsody - April 11

I can tell you why you felt so much better for 2 years... pregnancy can do that. The hormones released during pregnancy can actually relieve the fibro symptoms. Makes you wonder, why don't they market this stuff? What you are experiencing now is the return of normalcy... your own normalcy. You're going to have the symptoms again. I don't know if cymbalta helps. I can't be treated with antidepressants because bipolar disorder is so prevalent in my family, doctors are afraid it can send me into a cycle (I am not currently bipolar, but the chemistry may be in there, so they don't want to risk it). I take tramadol and vicoden, but can't do much else so far. I think the best treatment is frame of mind. Just enjoy your kids, don't give up, and live!

 

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