I have been diagnosed almost 4 months now. We are still tweaking meds and trying to find a combo that works well for me. I am blessed to live a few hours from Cedars Sinai Medical Center which has premiere doctors in the field of fibro. I see both a neurologist and rheumatologist as well as pain specialist when needed.
I have one unique challenge in that I do not tolerate trigger point injections. They have resulted in rare neurological side effects our first attempt (before diagnosis). I am currently being treated with neurotin, klonopin (I have terrible tremors) and most recently Savella. I just titrated up to 50 mg 2x a day after 6 weeks at 25 mg 2 x a day. I am often very sensitive to meds and so we move slowly to find the lowest effective dose. I have flexeril to take on the nights I am in pain. I am supposed to not take narcotics except on rare occasions. This worked quite well for some time, I even was able to skip the flexeril many nights. I saw the doctor 9 days ago and he did a trigger point test that made me want to fly through the ceiling. The pain just got worse from there. I can’t seem to recover. My energy levels seem to be spiraling downward, my sleep is all over the map and my pain is not controlled. I have been careful to do very little for the last week, and I mean out of bed a few hours and I am dead tired and napping again before long. I am exhausted when i get in bed. The past few nights I have taken pain meds in hopes of relief and sleep. I feel little relief and here I am wide awake at 2 am.
I have heard of flares and one doctor right after my diagnosis told me sometimes we need to do things different if I have one. Am I flaring now? How do I know what a flare even is or how long do I go without saying something? I was very sick for 3 years before this diagnosis. Over six various surgeries, two additional hospital stays. I am at at a loss. I don’t trust my body enough to know what is over reaction on it’s part and what’s something I should deal with.
I should be more clear. I do not get trigger point injections. I had one done 2 years ago for chronic pain and had problems as a result they are not an option for my treatment. The doctor however did test my trigger points for pain or whatever with a gentle touch/push at the last visit.
So after reading that I guess my question is when symptoms seem unusually worse than normal, do others contact their doctor for treatment to address it or just wait for it to eventually pass? Will it pass without intervention?
Hi PayonsMom, I am really sorry you can't handle the shots, they work different on all of us. Your case is different as far as intervention unless your doctor has a plan for you when you are in severe pain. (Maybe some pain meds). But if you ever get in so much pain you can't tolerate get on the phone with your doc, Im sure he will do something. When I am in a flare I know it and I'll go into my Rhuemy for a shot, the only bad thing is he can only give me 1 or 2 shots. So I pick my trigger points that are the worst. It takes about 2 days for it to help me and only last for maybe 5 days, but again I know folks that it will help for a month. Lucky them...We are all so different with our pain and our meds. I have 3 new best friends and they are, hot baths, heating pad and my heating blanket. Don't know what I would do without them. Best of luck to you, Lots of gentle hugs coming your way, Robin
Angelonearth, Periods of time when the symptoms are most acute are referred to as flares or flare-ups. During severe flare-ups, it is described as a deep muscular aching that can be accompanied by shooting pains. The NFA states that the pain is often most severe in the morning and can be triggered by changes in the weather, anxiety, stress and mental fatigue. When FM flares, the severe pain may cause many areas of the body to be very sensitive to touch.
I took the alternative medicine/ healing approach. When I have a flare, I examine my life to determine if I am sick, overstressed, or encountering a new irritant. Fix that, give it time (up to 6 weeks) and be patient. Meanwhile, I take hot epsom salt baths, dress extra warm, take multiple 15 min naps (dr. Told me to do that so that I don’t go into REM…it interrupts night time sleep) take IBprophen, lots of water, rest, juicing helps a lot. Hang in there! You will learn what works for you. You are relearning how this machine works!
Angelonearth, are you saying that your pain is the same all the time? What do you call it when your pain gets much worse? What is your objection to the word flare? It seems rather appropriate to me IMHO.
Flare:
to start up or burst out in sudden, fierce activity, passion, etc. (often followed by up or out )
I have some level of pain all the time but have periods when it becomes much worse, or flares up. I don’t know what else to call it except to say that it suddenly increases in intensity.
I have not had trigger point injections yet but have been told that they are available by my rheumy. Here is a link that discusses the difference between tender points and trigger points.
My heart goes out to you as I know all too well about trying to find the right medications. I have found for me that trying to embrace the pain and work through it is better than fighting it. I have a rule that if I have some thing/event on one day, the next I do not plan anything because it takes all of my strength anyway and I need to rebuild it. Not doing this has caused me immense pain and usually leads to at least a minor flare up. Because I have not only Fibromyalgia, but severe pain resultant from a spinal injury in a car accident my pain level each day is at minimum at an 8. Every so often we have to change meds due to not working anymore. I try to always listen to my body or otherwise I miss warning signs and end up with serious problems. Like you,I cannot take a lot of medications or shots due to allergies. Having a good and honest relationship with your physicians is critical and being the CEO of your care, too. Listen to your gut is very important because we know our body best. I have also found that having negative people around me or those people who do not understand that false hope is the worst to have near you canbe just as deadly as the pain because we have to stay positive and clear through this. Many people do not accept that we can have such severe pain because they cannot see it. Those are the ones who will drive you crazy until you realize that they have the problem that is worse than yours - denial and unkindness. Keep the faith. It sounds like you have a good team that is very caring and listens to you. I am here if you ever need a friend.
Maybe not exactly the same as you are describing, Hockeymom, but we certainly know when our pain level has increased very much. Sometimes, like last night after I had shopped and lugged rthe groceries into the house and then put them away my pain was so bad I was whimpering and saying Oh, Oh and my cat Pickles kept his eyes right on me. He knows, more than the others two cats when I am in a lot of pain. He waits for me to sit down in my recliner and then he jumps up on the backk and rubs his head on my head. Then he comes and sits on my lap and talks to me.
So, Hockeymom, it may feel a little bit different but it certainly is a huge spike in pain!! Sometimes it takes your breath away. Sometimes t makes you want to cry.
You are so right Lgt6238, the key is to listen to your body and know that there will be some "payback pain" the next day or a complete depletion of our energy so not planning anything for the next day or space of time always pays dividends.
Sometimes I think that the most important thing we can learn from living with fibromyalgia is to listen to our bodies and pace ourselves.
A good posting and sharing of what you have learned Lgt.
Yes Angel Pickles and I have a very close bond. He is my Siamese cat in a black and white coat. When he sits on my lap he actually talks to me. I have read that a cat has a hundred voices. Pickles most certainly has many voices. Sometimes his meows go up at the end as though he were asking me a question. Other times the inflection goes down at the end when he is telling you something. Over my lifetime I have had many feline friends but never before have I had one like Pickles.
I hate to say this, but this is a chronic condition. There is no well. There are some days that are better than others. I am sorry, but you have found a great support system here. I know I find emotional strength here.
I take Topamax for my hand tremors. You are probably sensitive to steroids. You did not mention if you had any heart related issues, mental health disorders, and someothers. These problems can make you very sensitive to steroids. I am bipolar and cannot take steroids; however, the injections don’t bother me. But, I am not sensitive to meds.
Hi Paytonsmom
I believe that there are several types of fibromyalgia, some with flares and some with just a progressive condition. This I know is not a popular view but it is my experience. I have had this condition for nearly eight years now. from reading your story I think that you have developed this condition because of the trials and tribulations of surgery,a shock to your system if you like. sadly. For me nothing has eased my pain and I have just learned to pace myself so that I accumulate as minimal amount of pain as possible. I do wish you well with your fibromyalgia management and hope that researchers soon develop a treatment and cure before we all suffer any more. My thoughts to all over this Xmas time. barb
That's an interesting viewpoint barb5bash and one worth considering. There are so many unanswered questions surrounding fibromyalgia. The other problem is that there are no long term legitimate studies on fibromyalgia. In time there will be the long term studies to refer to.
Thanks for sharing your belief. I'm sure some members will find themselves giving your belief some serious thought.
I, too, think mine came from an accumulation of surgeries, but the hair on the camel’s back came when I had a small intestine blockage. They rolled me into the operating room without sedating me.
I had so many surgeries before. However, I went into shock trying to get off the operating table, thinking I was falling off. All of a sudden, I was surrounded by people who were holding onto me and I was out.
I cried for 2 or more months after I had to return back to work. Things really went downhill from there. The pain and exhaustion began.
Oh my goodness tricky123 that was cruelty and someone was asleep at the switch that day!! Unfortunately you are still dealing with the cruel pain every day of your life from that case of cruel indifference. It almost makes me cry to read what you have written.
Thank you all for the feedback. Lots of interesting thoughts and ideas throughout the thread. After an extensive history with the help of parents, my doctors have some thought that I have had some level of the condition my whole life. I disliked being held close or cuddled my whole life, odd sensitivities to fabric (until fashion became important to me), complained blankets hurt, medical conditions. I have a life long history of giving it 100% then crashing hard to some medical ailment or another. The domino effect happened as I had increased my normal exercise routine to cross country running 5 miles a day, 20+ mile mountain bike rides, daily yoga, etc all trying to begin competition running - pushing myself through any pain and warnings. I crashed had surgery VERY slowly recovered ramped exercise routibe back up and fell flat - 5 more surgeries, 2 additional hospital stays. The doctor says my body is basically as beat down as it can get. We are working hard to get better although He says it will be a three year venture to just get things leveled out somewhat. For me I flare too much, I end up having uncontrolled “seizures” or muscle spasms and in the hospital. The events damage my muscles and last time it took me two weeks to be able to walk again after discharge.
I don’t have any mental health issues and trust me they have looked for them more than for a physical diagnosis at times. Nothing. We don’t do trigger point injections because my nervous system is hypersensitive and freaks out non-epileptic seizures, worsening tremors, etc.
I spoke with my doctor last night. Based on my condition 2 weeks ago when I saw him and the fact medication changes aren’t helping, he put me on a Medrol pack for the next six days. I have taken prednisone for asthma many times, however I am told this is somewhat different even stronger. I am not looking forward to it. I am not a fan of how steroids have made me feel in the past. my husband did joke that I won’t have to to worry about how I am going to get Christmas stuff done - they usually make me act like the Energizer Bunny 24/7…a very grumpy bunny. So here goes nothing! Hopefully side effects are mild and I start feeling at least functional.