New with so many questions, but really just one

Hi, Mumsies Scott, and welcome! Well. I developed my symptoms of fibromyalgia in a 45 minute period while watching TV. It started in my toes, then ankles, knees, and worked up my body until it hit my elbows. It was like I banged that nerve and I had the electrical pain shooting down both arms and it stayed that way for over two weeks. I headed to the doctor.

If you have been dealing with this for several weeks already, I think I'd go and see what is going on. Have you taken anything for the pain? Most of your symptoms sound like Fibro but you do need to be checked out. Your doctor should run you through tests to rule out other illnesses that have many of the same symptoms as Fibro...things like Lyme disease and lupus. The treatment is different for these other illnesses then it is for Fibro. There isn't a good test for Fibro so they have to rule out the other illnesses first. Just make sure your doctor treats Fibro patients. There are still doctors out there in the Dark Ages when it comes to this illness.

I use ibuprofen with food, Tylenol vitamin D3, magnesium malate, and a muscle relaxer called Robaxin to help keep my pain and fatigue under control. What works for one doesn't necessarily work for another with Fibro when it comes to medication so it's more a trial and error type thing. But you will get a lot of ideas on this forum. I also walk daily as a gentle form of exercise and I pace myself when doing things.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about Fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. There are links about the vitamin and supplement I mentioned and how they work in the body and also a wonderful link about how to maintain a positive attitude when you have chronic pain. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Welcome Mumsies Scott!

I'm really new here and have nothing to add for advice and just popped in to say I would see your doctor and get some testing done. My own doctor just did a battery of tests to rule out other causes of my pain and thought the answer was Fibro but did not test for Lyme so I guess I'll request that as well (thank you Sherrine for mentioning it). I woke up this morning and thought 'maybe I have Mono' so I'm going to ask for that as well.

Good luck in your search for answers.

Thank you all for your thoughtful advise! I made an appointment to see my GP this Friday. She couldn't see me any sooner but it's seems like this has been the longest week waiting for this appointment. I've been dealing with migraines for 3 days now and yesterday I broke down and cried my heart out. I felt better afterwards. I've been taking all kinds of over the counter pain relievers just for the migraine and noticed my body aches felt more tolerable. There is a constant feeling of muscle fatigue on my shoulders, arms and legs and I find it difficult to stand or even sit for more than a few minutes. I haven't tried the stretches yet because my ligaments are so painful I'm afraid to make them worse as I can't even lift my legs to get into bed and have such a difficult time putting on my pants. Today I put my jeggings on inside out and just left them this way because the trouble to take my boots and pants off we're just too much to bare. Also, my brain has turned into mush. I will definitely take the stretching advise since I'm an avid yogi I have been doing this almost all my life and now I find myself unable to do the simplest of tasks. I keep thinking this will just go away but it hasn't. I keep thinking I'm too young to feel like I'm 80 and that this happened much too sudden.

I will keep you all posted after Friday. I am hoping for the news that this is just a passing phase.

Thank you so much, it means so much to be able to talk to anyone who understan how I'm feeling and I am keeping you all in my prayers.

Sarah

Hi Mumsies Scott,

If you can I would suggest that you see a cranial sacral massage therapist. Mine has helped me with my migraines and much more. But I have to admit I have to limit what I do so I don't overdo and watch what I eat.

From experience, I can tell you, you want Fibromyalgia to be the last thing that is suggested, and not the first. It can feel like the "garbage can" diagnosis, and it's symptoms can cross over with many other overlooked things. I was diagnosed (which I dispute and inform all providers of this) within 60 seconds in front of a rheumatologist before any blood work was done, just by me describing a few of my symptoms. He then went on to tell me that the only treatment was 60 min of hard cardio exercise 6 days a week "Harder than you've ever done in your life". I burst into tears and my husband continued the coversation. I got "fat discriminated" and it was obvious. His advice was so poor. He was quick to tell me he wouldn't even treat me because excercise and antidepressants were the only treatment. He went on and on about his "patients with real illnesses that needed cancer drugs and how he didn't have time for me" Trust me, that advice has not been repeated or ratified by any other provider I've seen. I've since had other tests and scans done that have brought up a few other causes of my pain, including thyroid issues. (Be sure to ask for a full thyroid panel and NOT just a "TSH" as that only tells 1/3 of the picture). There are several viral infections to rule out, as well as all Sherrine mentions. Also, don't let yourself get thrown in the "fibro" bin just because of your age either, they are so quickly to say "Oh, must be hormones" when we are in our 40's and not feeling well. Some of your symptoms could be explained by peri-menopause too. You have to do some digging, just remember, the best answer isn't the easiest or the one that comes first.

Post Edited (JustanotherMom) : 1/8/2016 8:37:14 PM (GMT-7)

Hi all I'm back with a diagnosis and I just wanted to close end this message because so many of you offered such great advise and I am so very grateful for this.

So my GP tested me for a bunch of things like Lyme disease, Lupus, Parvo Virus and she did a CBC (blood test). She calls me back and says I am negative for all tests but that my CPK levels are elevated 600's. CPK is a muscle enzyme. So she refers me to a rheumatologist who by chance happens to be the person who treated my mother in law for Polymyalgia.

Reumatolgist a week later tests me for my thyroid, for rheumatoid diseases, for Epstein Barr, and again runs a CPK test to see where my levels are. She's confused as to why I am in so much pain and I cannot lift my legs more than 2 inches. She asks about my prescriptions. I tell her that the only new prescription is this migraine prescription my mother gave me that I used as a last resort and was the only thing that helped my migraine. The prescription is not sold in the states. "Hmm, you better stop taking this just in case". She calls me a few days later and says all of my test are negative except my CPK levels have doubled to 1,239. She now understand why I was in such pain. She refers me to a radiologist so they can pinpoint which muscle is causing the problem. She refers me two two muscle specialist in Mt. Sinai. One doctor does not take my insurance and the other in cannot see me until middle of March. This was in late January. I was devastated.

My sister got to work and went on a website and found a Neurolgist in Mt Sinai that was able to see me the next day!

Neurolgist asked me a bunch of questions about what meds I was taking, I see where this is going. He did a bunch of physical tests and asked me to stand up and squat. I couldn't squat. He scheduled me to get a muscle test called an EMG in two weeks. He seemed a bit concerned but assured me that this would probably be nothing and will clear up. He ran a bunch of blood tests some which included vitamin deficiency and off I went to wait again for the results. He called me a few days later and said I don't have a vitamin deficiency but that my muscle enzymes were very high and another enzyme called Aldoline tested high and he pushed my EMG a week ahead. He said I may have a condition called Myositis or Polymyositis in my case cause by that darn migraine Med. He sounded concerned but tried to hide it.

EMG was preformed by the very same muscle specialist that did not accept my insurance. After the painful test was done where long needles were inserted in areas of muscle and I was asked to flex, I was told that I do indeed have muscle damage. I would need to call this other doctor who will perfor a muscle biopsy and was handed the card of the doctor who couldn't see me until middle of March.

By then my CPK levels had come down to 800 so my doctor and I decided to wait it out and see if this "thing" would run it's course" specially since all the auto immune diseases tested negative. He believes my Myositis was triggered by the migraine medication I was taking. He said it's not that the Med was bad but it could have been a "bad batch".

Two weeks later I'm still in pain but not as bad as I was back in January. I did another blood test yesterday and I am waiting to hear the results and see if a muscle biopsy will be required. So the problem with me is that my muscles are leaking this enzyme and slowly dying causing much pain and discomfort. I know some of you suggested exercise but in my case I cannot escercise because this will create a greater problem. The simplest of tasks have become ridiculously complicated. Right now I consider myself to be "disable" but I have hope that I will recover as soon as I can begin some kind of treatment. I will also look into acupuncture and I love the idea of a cranial massage for the migraines.

Thank you all for reading this and my advise is to continue to search and fight until you find the right doctor or doctors who are willing to listen. In my case I've been lucky that the enzymes levels showed an urgency for them to react quickly. Good luck to you all and stay positive. 🙏🏼

Sarah

PS. I stopped eating gluten and I think this is keeping my migraines at bay.

Thank you Sherrine. I've already beaten myself up for taking that medication. I had it since the beginning of summer and ignored it until during a moment of weakness and 3 days straight of migraned I caved in and took them. I originally had absolutely no intentions of using it but for anyone who suffer from migraine can tell you there comes a moment of desperation and this is where I became weak.

In my shame in doing so I have mentioned it here so that anyone who reads this can prevent from making the same mistake I did. I had no intentions of advertising that this could be a good idea so please I hope you did not see it this way.

Thank you!

Sarah

Thanks Sherrie. I'm sorry for being so sensitive but like I said I'm so upset at myself for being weak and not listening to my gut feelings. but I want to take this experience to advocate for everyone to be safer around unknow meds. I was glad my doctor didn't give me the "Shame on you" speech and I am lucky that I wasn't on the meds for very long. The other day I was explaining to an acquaintance and she gave me "how could you?!" talk and it's made me want to hold back before I tell my full story. I don't want to hold back, I want to be up front so that others can learn from my mistakes. Thanks for understanding.

Sarah

I suffer from Migraines and I understand that moment of weakness all to well. I took someone else's Imitrex once in a moment of weakness. It did not cause permanent damage, but it was too strong for me and I was very sick and completely out of it. That was quite a mess that someone else had to clean up. I felt bad, but at that moment when you are hurting so bad, you will just about do anything. I have learned my lesson though. :)

I am so glad you are getting the help you need and feeling better.