Ok, well first I thought is was my asthma making my fibro bad but I went and got that taken care of and my fibro continued to be bad so I went to see my doc, new for my fibro cause my doc had to leave and this is her partner. He was super nice and put me on an anti-inflamitory to hopefully get me through the flair. However, it didn’t help and I called the office back and he gave me the options of upping my meds or going to physical therapy, neither of which I wanted to do. I have been to PT before I was diagnosed and would always leave hurting worse than when I went in. That plus my 2 kids equaled upping my meds. I have been on the higher dose for a while now but it does not seam to be helping. Before upping it the worst day was when my skin hurt and while I haven’t had that happen again my back is killing me. There is a spot on the left side under my shoulder blade that feels constantly like its pulled and hurts super bad when I take a deep breath, this is totally new to me. Also my arms kill when I lift them too high, like above my elbows and my legs feel like I’ve run a very long marathon. All of these are fairly new and only happen when I’m in a bad flair. I still have all my other pains too but I was trying to give the meds time to work and now I think they’ve had plenty of time but I don’t really want to call the doc again cause what is he going to do just put me in PT? I don’t know I needed to vent a little. Thanks. Blythe way I am on savella.
Hi Rebecca. I can relate so well to your post. Like you, I've tried PT (extensive visits to three different PT companies) and it made me MISERABLE. The pain was much worse after doing the exercises.
And like you, my back is killing me (SI joint, in my case.)
I did find that getting a sports massage helped the pain. She also used hot stones and boy did that help get rid of the pain! Trouble was that it only lasted about a week (but I had a tough job physically) and it was pricey. Still might be worth your while. The thing is, you have to get someone who is experienced in sports massage, not just a regular masseuse.
Hi Rebecca and Petunia,
I agree about disliking PT. it exhausted me trying to fight the traffic and the therapists would work me too hard so I would crash and be in bed for days.
Like Petunia, I’m a big fan of massage. If you can find someone who knows about fibromyalgia, the person should know not to work you too much. It is expensive but worth every penny.
I used to get the shoulder blade pain and I know how bad it can get. My chiropractor was the biggest help for that. Have you tried chiropractic?
Have you considered acupuncture ? It does work for some. As far as Savella, I’m told that it works better when used in conjunction with Lyrica. This hasn’t been the case for me but I was told that there was a study on that combination of meds. I personally believe Cymbalta works better and would like to drop savella/lyrica and switch back. Savella/lyrica has too many negative side affects IMO.
Good nite and hope you feel better soon,
This list of recommended practitioners is something I use:
If it is fibro pain then an anti inflammatory would not help. Pain meds would help in a limited way. Fibro is not an inflammation problem but rather a problem with how your nerves act. Savella/lyrica combo has so many side effects because of the Savella. Savella has been known to have a large pool of side effects in a lot of people. If you can handle te cymbalta at 60mg twice daily it seems to have fewer side effects. Lyrica side effects are mostly transient and will go away when you adapt. I have heard good things about acupuncture. It’s just hard to get your insurance to cover it.
What did your Doctor tell you? Didn't you just see the partner of your old Doc? Anyone in your family have any autoimmune diseases? Rheumatory Arthritis, Psoriatic Arthritis, Raynauds, Sjogrens, Lupus?
Ok let’s see if I can answer everyone. Thanks by the way. I have gone to a chiropractor before, but it was when I was pogo, I was actually thinking about trying him again. As for the savella I only get one side effect and have been through other drugs. Lyrica I have an intolerance to and cymbalta just didn’t work. So the combo thing with the lyrics is out. I saw just the partner since my old doc is now gone. He said last time that he was hoping to get me through the flair and was concerned about these wrapping pains I would get in my chest, those did go away even though the rest didn’t seam to get any better and thats when I called him and got the choice of PT or increasing my meds. My dad has rhumb and my great aunt on my dads side has fibro. I am going to call the office today and I hope at least talk to the one nurse who is awesome. They are backed up since it is only him till the fall and can only schueled sick visits for anytime soon either its like 2 weeks out. We’ll see what happens.
Well, the verdict is physical therapy
Does this new Dr know of your Dad's rheumatic/autoimmune disease? You may want to make sure, could save you much time. Family history means everything with these diseases.
No he does not
Most autoimmune diseases take 7 long years of pain, testing, and do damage before they are properly diagnosed. Find out as much as you can about this, find out if any runs in your mother's family too. Even skin diseases like psoriasis can be a key. Just remember, you have to write down symptoms, especially ones you post or relate to on here, on-going lists, as we forget, don't try to do it all in a day.
Your sisters need to also tell the rheumatologist about family history. These diseases are genetic, probably passed down from the beginning of time. Many new Primary CAre Physicians are taught to use HLA-B27 testing, but not all will show up as positive. It is believed some of the more severe conditions have and on-set age of mid-twenties, the most productive years of our life.
I do not condone self diagnosis, but I do urge you to do research, as you need to know what you may be up against, start with what your Father has. You will need to know what you are talking about as you will need to be your own health advocate, but don't try to tell the Doctor what you think you may have, but do tell them family history, and by all means LOOK IT UP!!
I second the above. While they do not know the exact genetic link they do know that there IS one, so having it in your family history puts you at risk for developing something. If you do PT don't be afraid to speak up. TELL them if you are feeling worse. Fibromyalgia and exercise is a delicate balance. If you do too much you can agitate the condition. Don't just stay quiet. You know your body better than anyone else.
Hello Willow, hope that you are well and happy. I left you a message.
I agree. I can only speak for myself, but I got nothing from PT, despite a lot of patience and hard work. So if you experience issues with it, do speak up.
Whisperingwillow said: If it is fibro pain then an anti inflammatory would not help.
I know this is a bit off topic, but is that true? Because that's about the only thing that DOES help my terrible back and SI pain. Hmmmm...
My old doc knew my that my dad has rhumy and I have questioned it with her, plus looked it up myself and that thankfully is something I am sure I dont have, but thanks very much. I have also looked up lupus and had my thyroid tested.
I don’t know. It has never really helped me before but if I’m not too bad I can take some and it does help, which is why my doc wanted to try it to get me through my flair, it just didn’t help this time.
I will be honest, I am not fond of PT -paid a lot of copayments for something I could do on my own. (walking laps in a warm pool)
Rebecca, If you would like to discuss any of this stuff further, I’m happy to be a sounding board. Just send me a note (email easiest way to reach me)
Well you very likely have other things going on in addition to fibro. For example, I’m taking Meloxicam which only helps arthritis pain not fibro pain.
Or maybe I’m tired and fibro foggy
You are doing things right on your end, if you don't feel as though the Doctors you have are truly helping you, you may have to keep looking. Some cities even have fibro clinics, plus University hospitals are always a great idea.
If you have a Chiropractor, they may be the one to get you referred to another MD, and even call and set up your appointment, that way you are not stepping on toes, it may take a while to get in so do it now and if you change your mind, cancel within 24 hours.
With all of my heart, I wish you well.
Arthritis pain not fibro pain. How in the world can you tell them apart? For instance, my fingers feel like they're chock full of arthritis but x-rays say no. So how to tell one from the other? I'm just curious. It must be a bear to know which is which sometimes.