Tomorrow I have an appt with my rheumatologist, who treats me for my Behcets disease, my Degenerative Disk Disease, and my Fibromyalgia. Although I have probably had Fibro for many years, I was just recently given the diagnosis. I wasn't sharing much of what was going on with me, because I was assuming most of my complaints were due to Behcets disease, which there is no cure for, and afraid my doctor would just up my "chemo drugs and anti rejection drugs" and I didn't want that. Finally I gave in and talked to him about my "memory problems" nerve pain, constant muscle pain and stiffness, and the fatigue. I also mentioned to him how bad it hurt when the lab tech put the tourniquet directly on my arm. That pain is almost unbearable to me. I'm going to have to try to get them to put it over my shirt sleeve. Also it hurts when my kitty walks on my chest or legs. I hate that. I hate having pain all the time. All of that being said, I do have pain meds, but would only take them if I just couldn't stand the pain, because they all make me throw up, to the point where I've had to go to the ER for help and fluids. So, I try to get as much relief as I can with ibuprofen, and try to tolerate the rest of the pain that it doesn't touch.
But it has been suggested to me to ask my doctor for a prescription for a nausea med, so that I can take my pain meds and hopefully get more relief than I have been getting, without getting sick.
I guess what I am basically getting down too, is I'm scared to go to my appointment. I have new symptoms....pretty bad collar bone pain for one. Also I have something in my right arm and right leg that happens every so often. It's like a little electric shock. Scary. What is that? Does anyone know? Feels like a tiny bolt of lightning shooting through my arm and leg. Ugh, I hate when new things happen. Call me chicken, but I get afraid of any new symptom. I feel a little better about reading where some of you have or also experience collar bone pain ,so I've felt a little more at ease, knowing that, that is probably fibro related. The other stuff scares the daylights out of me though.
I should shut up now! I've written a lengthy post again. Sigh.....I tend to be wordy!
I get those 'shocks' sometimes too, mostly if I have joint contact with something. Like I have to be very careful about placing my elbows on a desk or table. Might be 'hitting a nerve'? I also howl when it's time for taking the blood pressure, so it must be a fibro thing!
I hope that you can get to a better place through your Rheumatologist, I looked over some info on Behcet's, and it's a lot! You are very brave, and we are here for you, anytime! Please let us know how the appointment goes, what the Rheum has to say. You were very fortunate to find this one! Not everyone would have the knowledge about this rare disease.
Here is a video that explains it, and if you have watched the movie about Olympic (gold medal winner) runner Sanya Richards, then you do know a little about this rare autoimmune vascular disease.
so sorry about all the pain you’re going thorough. Fibro is not easy to deal with. Cymbalta helped me at first but I don’t like the side effects. Acupuncture has helped me a lot. If you can find a community acupuncture clinic I recommend it.
I'm sorry that you now have Fibro to deal with too! I can understand what your saying about each time a new symptom comes out and the worry that goes with that. I do get pain similar to what you describe running from my shoulder blade all the way up into my head on the left side. I describe it as an electrical wire at it's worst running along there. Even with pain meds on very bad days I can feel that electrical wire feeling and it's awful! I felt when I was on Lyrica it dulled it, but I had to go off Lyrica because of the side effects I was having. I am presently on Cymbalta and it doesn't help very much for that particular pain. I find that with Fibro just when you think you have experienced most things that go with it then another symptom crops up. I hear a lot of members on here always asking if a certain new pain their experiencing is Fibro related. More recently was the one about eyesight and bad vision whether it was Fibro related or not. So I'm sure you'll hear from other members they have experienced if not the same but surely similar pain like your's! I hope this has helped and good luck with your appointment...I would mention this to your doctor it's always best to keep him or her well up to date on your condition. Hugs...Sue (aka DreamCatcher)
hi vickey-im just newly diagnoised and always getting new symptons. i dont know ifs anxiety or fibro. i do have alot of anxiety and depression. my newest one is blood in my nose and burning prickley feeling in my lady parts. does snyone else get that? i do knw anxiety can do alot to your body, and i am pretty afraid
Vicky, first you need to know all symptoms of fm.
Buy a book called living well with chronic fatigue and fm.
And you need paxil or something for panic attacks.
I am on celebrex and lyrica.
Nothing will take all or most of your symptoms away.Sorry for that news.Its something I accept.I work part time cleaning houses.
Vicky,
So sorry to hear about these new symptoms. I experience jolts of electrical activity which will make my arms and legs jerkily move on their own. It’s strange. I take Skelexin which is a muscle relaxant, Lyrica which helps with nerve pain, and Ultram for pain. I am seeing a pain management doctor to treat my symptoms as my Rheumy was afraid to. I guess it offended his sensibilities? Anyway, tell your doctor what is going on so you can get tour symptoms treated and good luck today.
Connie
I wish you didn't have to go through this along with Behcets disease! Some of these symptoms could be the Fibromyalgia because as we all know this disease causes so many different symptoms. I also have Peripheral Neuropathy which causes shooting pains in my feet and sometimes my arms and hands. It is kind of humorous because my Neurologist says she doesn't believe that I have fibro symptoms and my Rheumatologist says that Fibro can't cause Peripheral Neuropathy. Seems to me that Fibro can cause just about any symptoms including the shooting pains I get in my chest when I sit or stand too long. I have Requip for restless leg syndrome also. Connie described it correctly when she said her arms and legs jerk on their own. It is strange! It is just hard to know what disease causes what!!!!
Make sure you talk to your doctor about all of your symptoms. Hope they can get to the bottom of this.
Zofran is great for the nausea. I have the electric shocks. I’ve assumed it was the fibro. Good luck with your appt. Nyucenta is the new pain med that isn’t a narcotic that’s for nerve pain.
I am home from the rheumatologist. I got some nausea meds to take with the pain meds. He also explained Fibromyalgia to me a little more, and he checked me over quite well. He said the collar bone pain was indeed part of fibro, and so were the little electric shocks. He was explaining to me something about pain receptors, I forgot now what all he said. Dang fibro fog. He did recommend a chronic pain management clinic...he said its not a medicine clinic but a clinic where you go and meet with 3 different doctors....that help you to understand about your pain. Or something like that. Suppose to help you understand that you aren't crazy, and that your pain is indeed real, and chronic. I asked him if I could think about that. Because I'm not sure how that could help me. I know Fibro is chronic, I know its real, and I know there isn't a cure. But I will go if I feel I could benefit from it. Is anyone else familiar with a chronic pain clinic? He also suggested I try walking just a little bit each day if I can, even if I walk at a turtles pace and even if no more than fifteen minutes. He said it will release endorphins that could help with the pain too. So, this is what I learned today.
I went to a pain clinic (UK) which was was run my a Clinical Psychologist, senior Phsiotherapist and senior Occuppational Therapist. I had an Hours appointment with the Pain Management consultant, then an hour with the clinical psychologist who both agreed to put me on the Fibromyalgia Pain management course. It was 12, 3 hour sessions once a week. Here we learnt how our emotional outlook can affect how we cope with pain and we did CBT to help, we were taught relaxation techniques, ways to do jobs with out putting so much strain on our bodies, and how to pace. We also had Fibromyalgia explained to us.
There were a group of us all together on this course and we all felt the major benefit was that we knew that the hospital believed Fibromyalgia was real and it wasn't in our heads.
It did benefit me in many ways and I would recommend it. You learn to accept it, pace yourself and do things that help. There is no cure but at least feeling pro active does help.
Sounds like a good visit! Got the Phenergan, got some fibro answers, and an op to do the classes.
Kanga gave the good review that I have read on this, I think the others were really in too much pain for it to seem that helpful, as they were given NO medicine options. It just depends where you are on the path, and what else is going on with you, I think.
Walking is my exercise of choice, every time, I cannot do the mall or the miles, but I can do my yard!
Glad it went well for you, and I'm so glad that we are all getting to know you!
Yes, Kanga and SK, Those are the three people I will be seeing as well. I guess I will give them a call back today, and tell them I will give it a try. Can't hurt, right? Glad to hear it helped you Kanga. I'm feeling more optimistic about it now.
if you give it a try and it works for you, you have gained out of it. If it isn't for you, then at least you'll be able to say you gave it your best shot and you can rule it out and try another pathway.