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Posted 2/20/2014 6:02 PM (GMT 0)
After having treatment globally from all types of doctors there is still massive amount of pain. As it was the only thing left I saw an excellent anasthetist who gave me 7 trigger point injections and then again 8 painful ones in the past month but I still have pain, he told me this evening that it's Fibromyalgia. I immediately started crying because I knew there was no cure. He's giving me a nerve pain medicine and asked me to try physiotherapy or a device called TENS.

I resigned from my job and am resting at home but I cannot continue to do this, I'm looking for other jobs but I can even sit for a while! I have back pain, I used to play tennis in the good days and wanted to restart but now the doctor said no tennis. Will I ever play again?

I'm also getting allergies to food I think and I developed a new one. I don't know what to do for myself, this pain is never ending, will I lead a normal life? To make things more complicated I was diagnosed with bipolar disorder 10yrs ago. I feel like its a vicious cycle with fibromyalgia leading to depression and my bipolar meds treating depression. As a result I am depressed.

Suggestions or comments are highly appreciated as my health is out of control :(
Posted 2/20/2014 7:57 PM (GMT 0)
Welcome modemondiale to the forum. I am sorry to hear about your chronic pain issues and not being able to work. The chronic pain is a huge factor with fibro. Many of us here have chronic pain at different degrees. I use to have severe chronic pain similiar to yours. I felt like I was in this viscious cycle and no way out. I just happen to find this forum myself and it turned my life around with the fibro. I learned a wealth of information and got great support. I hope we can help you in managing your fibro.

What amazes me about fibro is that some of the simplist treatments help manage fibro. I have tried the hard core narcotics, tens and etc for any relief. All I got was dependency on meds and frustrations. You have to remember we all respond different to meds and many here have other illness that makes their treatment plan different. Some use the new fibro meds with good results and others use narcotics for control of pain. Many here use natural remedies and get great results. It's all about trial and error method. I hope you can find what works for you soon.

Maybe since your off work right now, you can spend some extra attention on yourself. Stress and working long hrs. will set fibro in a flare easily. I found out that making some changes in my life style really help my fibro in so many ways. I reduced my stress in my environment, eat healthier, good sleep habits, light exercise, seek a therapist and reduce my hrs. of working. I learned this from the forum. Making these changes of course didn't happen over night.

I use to suffer from chronic depression for over 20 years. I finally was able to see a therapist that works with chronic pain. I learned many things on how to control my pain. I do take an antidepressent at this time. After getting good control over my fibro and educated about fibro my depression is not there anymore. I have so much joy in my life once again. Its hard to feel good inside if your in severe pain all the time. I could remember having to write down the blessings at night I was thankful, even if they were tiny. It really helped me focus on some postive things in my life.

Have you tried vitamin supplements for chronic pain? I was never a vitamin person until I was hearing how well they work for fibro. I now do the following for my fibro. Magnesium, vitamin D, calcium, heat, light exercise, reduce stress, eat healthy, remron and subutex for pain. I found out for myself the more natural I can keep it the better I feel. I know others take more supplements then I do.

I hope we can help support you here. This is a great place to get control of your fibro. I got started by reading post frequently and asking questions. I bought some great books on fibro and educated myself. I took control of this fibro instead of it controlling me. Don't feel bad if you need to just vent the day away. Lol We all have been down that road before. I hope to see you around the forum again.
Posted 2/20/2014 9:16 PM (GMT 0)
Welcome!

We all go through the stage you're in. I promise that soon you will get absolutely livid about this and it will kickstart you into the next stage: active participation in your healthcare. At this stage you begin elimination diets, acupuncture, try different supplements, etc. You begin to have small successes and THAT, my friend, is when the magic happens. It's a tough illness, and I would be lying if I didn't admit that I am depressed too (lots of good days and a handful of bad) but oddly enough, we control our pain when it's important to us.

I discovered recently that I felt the best when I woke up. After careful examination, it was the sensory overload that was making my nerves go crazy. Knowing this, I have had small success using anti anxiety meds and managing my stress - are you allowed to take anti anxiety meds?

Also, if you go to pain management, make sure that you don't touch tramadol or nucynta (or Butrans for that matter) as they will all tickle your synapses which is no bueno for a sensitive person as yourself! :) But there are pain meds that you absolutely can take with BP, but I will let your doctor and pharmacist fill you in on those.

It will get better. Promise. But I also promise that you have to stay active and you have to be incredibly vigilant of what you put in your body. Chemicals are a no-no for many. So you might find out that you can't take any meds, but there are a lot of folks in this group who have great non-pharm routines that work well for them. Who knows why we got this.

It doesn't seem fair, I know. Maybe in the end, we're the strongest people out there and we are the only folks who could actually handle something like this. Just something to think about. :)
Posted 2/21/2014 6:49 AM (GMT 0)
Hello ak angel and AnnaBanana, first of all thank you so much for the supportive responses and the warm welcome. I was looking for answers as I found out just yesterday that I have fibro and came across the forum which I found was the best place to be in the given situation. I feel like my life is going to change but I really didn't need another problem already having bipolar. Your responses are encouraging and I guess I have nothing better to do than take care of myself.

I'm not taking any supplements right now. I used to take multivitamin but then I thought it wasn't necessary as my diet was ok. Now i'll start taking Magnesium, Vit D, Calcium and some of things mentioned in the responses. I've been a huge coffee drinker but I read yesterday that it makes pain bad. So this morning I haven't had it, I'll see how things are today. As of today, I've also quit sugar substitues. My doctor has given my Lyrica to help with the pain but the doze is less I think as it's not helping. I take 75mg at night and 50mg in the morning. Since I have bipolar I do have access to anti-anxiety medications like Lorazepam, Valium which I was taking for pain before but the doctor stopped it when prescribing Lyrica.

I'm just sad that all my life I've been very sporty, swimming, volley ball, tennis and table tennis. For the past couple of years i've been playing tennis which is my greatest passion. I don't know if I'll be able to play so it makes me said. Does anyone with fibre plays sports like tennis?

Thank you so much for you responses again. I wish both of you very good health as nothing in the world matters more.
Posted 2/21/2014 2:18 PM (GMT 0)
Hello Mode,
Ahhhh, Fibro it sure is a pain in the a** and everywhere else for that matter. I see the ladies have given you some great advice. It really is trial and error on the med part so do work with your doc on that and be honest. If something isn't helping after giving it a fair chance , then say "this isn't working for me. We need to try something else. " You have to be very proactive in this.

You will need to take a multidisciplinary approach that can involve meds, supplements (magnesium malate, which I use) massage and you will need some type of a home program that involves exercise, and stretching.

Do yourself a HUGE FAVOR and DO NOT Google this condition and read blogs about this condition! ! Why? Because you don't know who's writing these things and you can come across some very scary info that simply isn't true. STAY away from constantly searching about this. Do not occupy your mind with it and become obsessed with it. Keep moving you have to move or You will be more stiff and in pain.

Like those above me have said. You can get better than you are now. Really you can. You will have pain EVERYDAY BUT.... once you find out what helps YOU. It will just be an annoyance in the background instead of screaming at you.

This should encourage you. This is year 13 of this condition. I have pain everywhere everyday. I work full time 50hrs a Week Retail. I have never missed a day of work because of it. I thought I'd never lift weights again because of it. For 5 yrs I quit lifting. Guess what? I'm lifting again. Slowly very very slowly I got back into it.
Tennis? Maybe not right now for you. Work on getting the pain under control. That's what you need right now. Then maybe someday you can ease back into tennis.

Whew!!! I need to shut up now. Take my meds and supplements and get ready for work. Hang in there. When your brain tells you I can't handle this you need to say haha watch me! Keep saying it til it's reality. Take care and keep posting.
Posted 2/21/2014 3:12 PM (GMT 0)
I take D3 5000 iu a day. You may want to increase if you aren't taking that much. It really does help with mood and how I feel. Though the days are getting longer now, you might not need as much. I take 5000 all year.

I hope that you feel better soon. It sucks, I know, no cure for fibromyalgia... Try to take life one day at a time...

Hugs, Karen...
Posted 2/21/2014 4:55 PM (GMT 0)
Thanks Karen and Michael for your very informative and encouraging responses. I got Magnesium 400mg but need to verify with my doctor. I'm not in the US right now and could not find malic acid or magnesium malate. Will check from another city.

I'm just shaken so much because I've been applying for jobs in Europe, I want to move and now I have this condition which is not in control. I actually believed that my pain would be gone with the injections but I see that it's here to stay :(. I'm going to physiotherapy on Monday, will speak to my doc as well as find someone for massage, at least I know what to do rather than keep trying to find a diagnosis.

I read somewhere that caffeine increases pain so I all of a sudden stopped coffee which I'm used to drink 2x day. My pain is better but head is awful, withdrawal! Any comments...

Hugs and love

Post Edited (modemondiale) : 2/21/2014 9:59:48 AM (GMT-7)

Posted 2/21/2014 5:02 PM (GMT 0)
Hi, and welcome! You can order magnesium malate online. That's where I buy mine. Magnesium malate has the malic acid in it. It has helped me and others quite a bit.

I also ordered a book called The Trigger Point Therapy Workbook from Amazon. It shows where the trigger points are that are causing your pain and you can massage them out. It has diagrams. Much of our pain is referred pain.

I had a frozen shoulder and my doctor wanted to do the cortisone injections but I declined, bought this book, and now my shoulder is back to normal again. It really is an extremely helpful book.

If you haven't already, do read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there.

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
Posted 2/21/2014 7:04 PM (GMT 0)
Modemondiale, I wouldn't stop coffee all at once. Your probably going to feel miserable and get a bad HA. Your most likely to succeed with it if you go at at a slower pace. Plus your Dr. stop your Valium too. I would take challenges in baby steps. Lol I would take your exercise such as tennis in baby steps. The best tool I learned here is do things in moderation. This has paid off so much!

Your Dr. might say your magnesium and other vitamins are normal in your blood and you don't need them. At least this is what I was told. I explained to my Dr. and it really made a difference in the supplements.
Posted 2/22/2014 6:37 AM (GMT 0)
Hi Sherrine/ ak angle,

Thanks for the information. I will try magnesium malate. I checked with my psychiatrist and said it was okay to take, no issues. I have to get my Vitamin D tested though. I did take a mug of coffee this morning but I won't have the second one I take normally. Does physiotherapy help any of you or do you do it regularly? My upper back is always stiff in the morning in the back of the shoulder blades area. This is a recent phenomenon. Another thing I had noticed was that I was transitioning from Cymbalta to Sertraline and I realised that I have more pain now so I'm getting back on that after discussing with my psychiatrist. It seems that Cymbalta was helping a lot.

I really appreciate all the support/answers I'm getting here.

Hugs
Posted 2/22/2014 12:27 PM (GMT 0)
Magnesium malate seems to really help me. I buy it from Puritan's Pride. They have a website and also a paper catalog.
Posted 2/22/2014 12:38 PM (GMT 0)
Do they ship internationally? I left the US and am in Asia now, trying to move to Europe as soon as this pain of a pain disorder gets controlled.
Posted 2/22/2014 12:52 PM (GMT 0)
Mode,
I use the Source natural brand of the magnesium malate. Not sure what the others use. I buy mine at a health food store. However I did check Amazon for you and they sell it and I believe they ship internationally.
Take care my friend!
Posted 2/22/2014 3:39 PM (GMT 0)
Thank you so much Michael, very kind of you to check. You take care too!
Posted 2/22/2014 3:56 PM (GMT 0)
i also use Puritan.com for my supplements. They sell the Source Naturals magnesium malate and their prices are really good! I also get my vitamin D3 and other supplements there.

I checked and, yes, they ship internationally! So you are good to go. Just type Puritan.com and you will see their site.

Sherrine
Posted 2/22/2014 4:15 PM (GMT 0)
Thanks Sherrine, I'll check it out. Wishing you good health!
Posted 2/22/2014 7:10 PM (GMT 0)
I hope that you feel better Modemondiale,

Fibromyalgia is no fun. But I think that you will find with the supplements, you will feel better. It just takes a little time.

Keep hanging in there, and do keep posting. It sure does help to know that you aren't alone with this. It is a blow when it hits. But hopefully you will be able to keep the symptoms at bay.

Take care and keep posting...

Hugs, Karen...
Posted 2/22/2014 7:25 PM (GMT 0)
Tennis is my passion also and i was playing right up until this hit about a year and a bit ago...I am still working on getting my fibro under control - but I have had many active days and also some bad days...
I never give up the hope I cant play tennis again someday...i thought about easing in gently, taking a ball to a court and just hitting a few with my kids, this gives me a bit of a fix being on the court, that GREAT feeling but also not overdoing it!
I think once you can build up some sort of exercise plan, anything is possible...
Dont give up hope - and if you cant or i cant, we can still catch the slams - I have been lucky enough to go to Wimbledon many times and plan on doing this till the day i die!!!!
Posted 2/23/2014 4:36 AM (GMT 0)
Give yourself time and take it slowly. I was diagnosed three years ago and I'm now taking Tai Chi and working full time and doing nearly everything I was doing before. I use the supplements that were mentioned here. I also take Savella. The stiffness between my shoulder blades was helped greatly by acupuncture as was a lot of my pain.

I had to make some dietary changes as I discovered that I'm allergic to cow's milk. Aspartame (Nutrasweet) and MSG both make my symptoms far worse.

You'll discover what helps you and what hurts you as you go. Keeping a journal and tracking what you eat, the weather, your sleep and your exercise will help you figure it out more quickly.

I wish you luck and I hope you are out on the court again soon!

Joy
Posted 2/23/2014 12:09 PM (GMT 0)
Thanks all for your responses! I hope I can play tennis again or actually I want to. Sometime back I didn't know I have fibro but I had a bad back pain and then no one could diagnose it or tell me what it is that I have, I just said well, if it's nothing I should play. I played with the back ache, had so much fun playing 4 times a week and then I had to stop. I feel like if this pain is here to stay then why not do something you love and have pain rather than just pain on it's own. I did catch a few slams. Been to US open twice and once to Rolland Garros.

After some research I've done and reading everything here, it seems like no drug is going to work for me. So what I looking for is an anti-drug treatment if anyone has a good plan? I'll take supplements, exercise, phsio do as much as I can because there are only a handful of medications and I don't like their side effects just after reading about them I know they're not going to work for me. Unfortunately I cannot take Savella since I"m on Cymbalta which does help but I've been taking it since a long time much before this pain materialised so I do need something in addition.

What supplements are essential that everyone feels help with this condition?

Hugs.
Posted 2/23/2014 5:21 PM (GMT 0)
I just posted before I read this post. I didn't know they could inject you for fibro. I am so sorry to hear how much pain you are in. I know how you feel because I am right at this minute going through it. The pain is unbearable, horrible, debilitating. So much you are nauseated. I know how you can not get up to walk, legs go numb from apain. No one understands me and I don't know what to do next. So I understand where you are coming from. I hope you find the help you are looking for and if I find something I think you can benefit from I will come back and share it with all of you here. I guess we both are going to have to get a hold of this fibro thing, cause it's kickin my butt too! It stinks!
Posted 2/24/2014 6:08 AM (GMT 0)
Hi illone, I agree, it's kicking my butt too. What kind of injection were you talking about. I've have 15 trigger point injections in the past month in 2 rounds but they didn't help, that's why i'm looking for other alternatives.
If I find something that works for me, I will also definitely come back and let you know. Hope we both figure out how to control this, take care!
Posted 2/24/2014 6:27 PM (GMT 0)
If you plan to use magnesium maleate, please check to make sure it doesn't interact with any meds you are taking. Examples are high bp meds, diuretics, antibiotics, etc. your pharmacist will be happy to assist you with his.
Posted 2/25/2014 12:28 PM (GMT 0)
I have such bad pain in my back I could die! I was just working on my CV in bed and it's killed me, I've just started going back up on Cymbalta but still not on maximum doze. How can I get thru the the day without terrible pain that makes you cry! Do any muscle relaxants work?
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