... Rheumatology. Have seen Neuro/infectious disease. ID found elevated titer/elev EBV-so take Acyclovir prn. Most concerned with Chronic pain/Fibro-horrible nocturnal leg/arm cramps. Keeps me up a lot, lots of Fibro fog, memory impairment. Taking 2000mg Neurontin, 100mg Tramadol q 6 hrs prn pain, 20mg Flexeril, 1mg Xanax three times daily. Nothing works for the leg/arm cramps. Also Dx with Chronic Fatigue. Sleep most of the day , very tired and weak. Any suggestions?? Going through SSD w/an attorney. All my Drs. document not curable, perm disabled. Also Hx of severe depression, but cannot take anti depressants and I've tried them all
Welcome to the site. You will find many members here with Fibromyalgia & Chronic Fatigue. I am not really sure what the infectious disease is.
My question is how long have you been on the medication you have listed below ?
And how recently were you diagnosed?
Sorry one more question are you seeing a Pain Management doctor? If not that will be my First suggestion.
Hope to hear from you soon.
Yes I strongly suggest that you see a Pain Management Dr. as they can help you with your pain issues. They can also start you on a stronger pain medication. Sometimes they can do nerve blocks that help also.
But a Rheumotolgist cannot prescribe narcotics & do not specialize in Pain Management. I think you will find Great relief once you see a Pain management Dr.
I am also sending you a friend request if you would like to ask me " Private Questions" off line.
I also am currently getting ready for my Hearing in front of a Disability Judge fire my case. In December it will be 15 months since I filed. I also used a lawyer which is the best way to get approved with th e first time. I am not sure your financial circumstances but I ran out of money & if your income is low you can contact the Manufacturers of each medication for patient assistance & they will usually provide you with low cost or usually Free medications. I am on about 25 medications & I get all but 3 for free.
The 3 are Generic & you have to have Name brand medications.
But send me a "private question" & we can chat more. Hang inn there, Kathy
Hi Kellybell, & welcome to the site. First, don't worry about how to manuver the site, you will learn as you go along. To friend someone, just click on their avatar or their head with their name under it. It will take you to a pgae that shows their info, & it will ask you if you want to be friends. Very simple, & you can add me too if you wish. Then you can send them a private message that is just read between you & your new 'friend'. On to your question, it could very well be you are lacking in certain vitamins & minerals that are causing you legs cramps at night. I also have had this & so have many members. I take a multi vitamin and mineral, plus 1000mg of vitamin C a day which is my miracle cure for the leg cramps. Others have tried this & say it helps them. Now I also take extra calcium (1200mg) & vitamin D because of my crumbling bones. Magneisum is very important also for muscle & nerve.
Make sure you are getting at least 400mg of that too. It also helps with the bowels (I take 500mg). I used to have IBS, & since adding the extra magnesium I don't seem to have it any longer. I too have fibro as many members do, plus many other pain problems with my bones & arthritis really badly. I so understand how you feel with the fibro. If you can, try the supplements for the leg cramps as most of us do not get the correct amont n our diet. They will not hurt you at all as your body will get rid of the excess. Wouldn't it be wonderful if it did stop your cramps? I do notice if I get busy & forget to take them one day, I do get the cramps back again. Agian welcome to the site, & please stay with us for support & advice. I agree with Kathy too about seeing a Pain Management doctor, but with fibro, the most important thing to remember is execise, exercise, exercise. I know how difficult it is, but when you want to lay down & just sleep during the day, go for a walk instead. Learn how to do stretching exercises before you do this & you'd be surprised at the energy it gives you. Learn how to do yoga as it is a gentle exercise of mostly just stretching. It really helps, & you can get books at the library to learn these moves. Also warm water exercise is good for fibro pain. The water gives you equalized pressure on your body & makes moving much easier & without pain. Our local YMCA has a day a week that they warm up the water for people with arthritis, & it's free. The Arthritis Foundation is who does most of the research on fibromyalgia, & they have a gret website & a monthly magazine that I subscibe to. Lots of good info there too. Stay with us for support, & lots of good info on fibromyalgia. Again, welcome aboard...
The tramadol is every 6hrs, that is within the recommended dose, but the highest. The trick to pain control with tramadol is to take it every 6 hrs and keep the pain under control. Once it is severe tramadol will have a hard time getting rid of it. That's what I take. Welcome to the group, but sorry to hear you had to join us. Yes you need to see a pain management doc, but don't expect the pain to go away totally. Fibro pain is very hard to get rid of. I've had it most of my life, I'm 65, and not a day goes by that my legs don't ache. I find that heat works better then anything else, hot baths, and I use an electric blanket, turn it up a little and cover up from my hips down in bed.
Kellybell117. First I would like to give you a very warm welcome to the site. You have come to the right place for advice, support, feedback, ect... There are also some nurses on this site, who give excellent advice too, that can benefit you greatly. I was diagnosed with fibromyalgia a couple of years ago, and I didn't even know what it was. I just knew I had all of the symptoms like widespread pain, fatique, fibro fog really bad, ect... It was all so very new to me. I joined this site and just read a lot of information other's who have it gave. There are some very knowledgable people on here (couple of example's, kaismama, DzooBaby, ect..) who are very knowledgeable in the medical field who explain things where you learn alot, gain knowledge, and can understand what their writing. Many other's too. So you will definately become more familiar with medical issue's the longer you stay on, and read everyone's opinions and answer's.
And I do encourage you to stay on. I would also like to friend you, and let you know I will be as supportive as possible. Give me a shout any time you want girl. I've had tons of support from friends I've become to know on here. Anyway's, I too experience bouts with my Fibro, and I hurt all over. Some places more than other's at times. I tried the main meds they prescribe for it, but unfortunately had side effects, and had to discontinue it. When my Rheumatologist first diagnosed me, he put me on Mobic and Zanaflex. I have tried other med's a couple of times, but I'm currently back to Mobic and Zanaflex and pretty much have good results. There are many different exercises and different things already mentioned, that are helpful too. Please know you are not alone with this. Many people on here have it too. At first my Husband didn't really believe it was a condition, because the pain management dr. I was seeing at the time didn't believe in it and didn't treat it. Period. Thank goodness he does now, and Fibromyalgia is one of the things my current Pain Dr. treats. I hope you have gained some information by what everyone has mentioned and suggested to you, and again, I want to encourage you to get ahold of me anytime you want. I have pretty big ears, and am willing to listen and be supportive. I don't physically have big ears.lol. I think you know what I meant. lol. Take care, hon, and I'm here if you need me. You're Friend, Ruthie
Hi Kellybell7, welcome to this great site! You will find great support and advice here.
I also have fibro, but the good news is the chronic fatique has disappeared after about 12 years of this debilitating disease, it CAN get better, so never lose hope!
I believe diet has a huge component over fibro. If you cut back (waaaaaaayyy back) on any sugar, including pasta, potatoes or any starchy or sugary foods, you may find yourself with less pain, lessening of depression and less fatique. It is not difficult to do this, or I should say it was not difficult for me. Tis amazing how our American diet is so loaded with carbohydrates(which is just sugar disguised) and sugars of all types.
Also, if you've the means, please see an accupuncturist. The pain and even depression can improve immensly (sp). Massage is also quite healing.
Best wishes to you and hang in there, never lose hope...
I can relate with a lot off your symptoms..pain, brain fog, fatigue, weak. I was diagnosed with seroneg. lupus then later with fibro. And one opinion of CFS. It's been a 20 year journey. They also wanted to rule out lymes. Stay connected! :) . It helps! I will pray you get your SSDI. I was able to get mine after the initial state disability. Welcome!
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