Renee

by Renee
(Colorado)

I've suffered from unexplained pain for over a year. The only thing it seemed to relate to is my severe and increased stress at work.


I've seen pulmonologist, dermatologists, cardiologists, neurologists,etc. and they find nothing and no explanation for the pain, rash/sores, severe fatigue.

I finally saw a rheumatologist a couple of months ago who did an xray on my shins thinking he knew my problem but it came back negative. I finally got a "maybe fibromyalgia" comment out of him but there was no real diagnosis, treatment plan or anything else. I asked if we could come up with a treatment plan and he said he wasn't sure what he could do to help me. This left me very confused.

He did give me a pain medication (1 every 8 hours) put it takes more like 2 every 8 hours and it helps but doesn't alleviate the pain and does nothing for the stiffness and swelling in my ankles, legs and feet. He said to take the meds for a few months then gradually come off them and I would be OK.

I'm sorry but the pain is worse and not taking anything or taking meds for a couple months with the pain supposed to miraculously go away after a year is ridiculous.

Now I don't have health insurance due to expense so I have no care.

It's harder and harder to go to work and work a full day and I'm becoming more and more depressed about my illness to a point where I fear I will lose my job.

I'm not sure what to do anymore.

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Anyone Tried LDN?
by: Renee

Thanks Tammie and others with all your suggestions.
I'm once again stuck now that I finally have a diagnosis. It took over a year to get a diagnosis but now the rheumatologist just doesn't know what to do. I can't take Lyrica or the other approved drug due to side effects so she has left me on Tramadol (100mg 3x day) and Flexeril at night. I find other off label meds and ask to try them but she stands firm and won't even try anything more. I read a Stanford study that suggested LDN (low dose Naltrexone)as a possibility and even printed the study info just in case and she just says no and referred me to a pain management clinic.
That is great but I'm paying out of pocket and remind her of that and ask if we could try some different things first but no and she still wants to see me every 45 days at $250 a pop.
I know the doctor has to see you to help you but monthly and knowing what a financial hardship it is?
Has anyone tried LDN? Different things work for different people and I'd just like to try. I'm trying to get a couple weeks off work so I can try the Lyrica and see if I can overcome the side effects without having to go to work but my work is being nasty too.
I finally did get a family medical leave that allows me to take 13 weeks of leave without worrying about losing my job and I get another 13 weeks after July 1 but it is unpaid which I can't do. Now that I have told them formally about my illness my boss treats me like an idiot. I've had the issues for the past year and she knew but no problem but now with doctors info she treats me badly. She has also told me I have to come to work 100% as far as how I fell physically or stay home. Well that is impossible for most people much less someone with FM. I haven't felt 100% in over a year. Unfortunately I'm a paralegal that works with attorneys so they think they know everything. I'm concerned too with my meds as they do make me spacey sometimes and tired.
I continue with some supplements but the pain never goes away and is only manageable with Tramadol which I can't take at work.
I hope someone has tried LDN or has other off label med suggestions. I can get insurance as of July 1 so I hope to change Dr.'s and find someone willing to try different meds and work with me.



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Meds
by: Tammie

Just found this page tonight. I thought I had Fibro back in 2003-2004, when I told my co-worker (I have a Masters in counseling and worked at a mental health facility-coworker was a social worker) she said, "oh NO you don't WANT that" as if I just decide to pick a diagnosis. I wasn't officially diagnosed until 2009. Had a great Doctor of Osteopathy, who put me on Fentanyl patch.. Started low dose, then moved to higher dose, changing them every 3 days. They never lasted three days however. When I moved to NM, I got a doctor, who acted like she didn't believe, but she still prescribed the patch for me. But I kept looking for another one, and after 10 months, I found a physician assistant who actually believes in, and treats people with Fibro.
I like the patch (now changing every 2 days, with much better results) because I don't have to take a lot of pills, and in this state it is very difficult to get pain pills. Lyrica, Cymbalta, Tramadol didn't work for me. I still have breakthrough pain, and serious lumbar spine issues, so I also get Flexeril and Oxycodone, but I only use about 40 pills per month.
I think that my using the patch gives my doc some confidence that I'm not a drug-seeker or a pill-head.

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Breaks My Heart
by: Susan H McIntyre

I can't imagine going without pain relief. If you have no doctor or other care, maybe immunesupport.com would provide some alternatives. I don't find them as effective, but it may provide at least some relief. I have ordered from their medical supplement site (prohealth.com) and been very happy with their products. As I said, it's not ideal, but it may help. I have nothing to gain by mentioning these sites, by the way. It just breaks my heart that you are without care or meds. Sending soft, gentle hugs.

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Be careful with supplements
by: Meg

I've had MS 20 years and Fibromyalgia 15 years so chronic pain and exhaustion are my constant companions. I grew up around Dr. Henry Heimlich and his family. Interestingly, Henry's wife is a well known author and practitioner of Homeopathy and Herbalism. So, we have two doctors who view patients and their ailments from all angles.
The use of high dose vitamins and minerals has been an ongoing conversation with us. Vitamins we thought had benefit in high doses 20 years ago are now known to be a waste of money. Between 2 doctors, and me as a patient, we have concluded that only a few supplements are beneficial in large doses in the long term. For me, a 100mg B Complex helps nerve conductivity and energy levels, a 1,200mg Calcium supplement with Magnesium has many benefits for muscle and bone, D3 at 1,000 to 3,000 units is needed for mood and other body functions. All other vitamins and minerals should be gotten from food unless you have digestive or absorption problems. This is not to say that high doses of other supplements don't help, it's just wise to be cautious about supplements especially if your blood work shows everything's in normal ranges. A good source of advice for natural remedies is Dr. Weil. He started out years ago taking lots of supplements like we all did but now he's down a few key ones. Dr. Weil sells his own line of supplements but he often talks people out of buying his products that won't benefit them. So, take heart, don't waste money and just do some reading before swallowing high dose vitamins or minerals. A little knowledge goes a long way.

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Natural approach
by: Erin

I've been experimenting with natural treatments for the last two years. I do still take flexeril. I used to take two a day and am now down to one every other day. I had weaned off completely but had a setback with an illness this summer. Multivitamin helped relieve some pain, organic diet helped some too. I've now switched back to a vegan diet because that seemed to help. I still have some trouble and sugar is my next evil to eliminate. I love sweets and have been trying everything else first.

And I have learned that I must exercise every other day at a minimum. Weights, cardio, and yoga on different days throughout the week. I have incorporated nightly moist heat packs in my worst spots and monthly massage with a person schooled in myofascial release. It's an ongoing challenge to stay ahead of the spasms, in particular, but it can be done..... Usually :)

From Anne From the info I got, Flexeril is an off-label for fibro. It takes 5 patients on it to get 1 a bit better, has many side effects and is contraindicated with many treatments. Erin, that's for those who read your comments. You're right, you should be tackling your sugars and especially eliminate fructose and sucrose that are big culprits in liver and muscle intoxication. You should be taking much more magnesium and in a form that is absorbed. In our last e-book, we explain this.

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Ultram is Tramadol
by: Renee

Yes, Ultram is Tramadol but I haven't taken that high of a dose. They said I could stop breathing if I took that high of a dose at once. Maybe they were just trying to scare me. I'm only taking 50 mg every 6 hours along with the muscle relaxant. I was told Flexeril was not good for long term use. I have a muscle relaxant that is used by MS patients that you can take 3 times a day and does a good job.

I think Tramadol (Ultram) is better than anything else I've tried. It was just hard to get a doctor to know what to do or even try. They feel a FM diagnosis is just "giving up" and that it means they "just dont know what else to do" and that was a quote from my doctor and the reason she didn't want to make the FM diagnosis. I think she felter better if it had been MS or Lupus or cancer even.

My only continuing problem is the actual muscle pain as if you pulled a muscle. Now that the all over pain is calming down there are 3 areas that feel as if you've pulled a muscle badly - back of skull at neck, lower back and front of feet and front of ankles. Nothing seems to relieve this and I'm not sure why that pain lingers.

I have to be thankful for what improvement I have so far but this is still a very strange illness and with no health insurance or on going physicians care I feel like I'm adrift and not sure what to do next or just try to keep going.

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Fibro pain relief
by: LeBlancHarp

You might consider Ultram slow release. It is 300 mg and assures that you have pain relief all night. Also, Ultram works best when combined with either Tylenol or Ibuprofen. I also take Cymbalta and also flexeryl when needed. Magnesium Malate is also excellent for pain. In addition I have a Tens unit that I use with a heating pad. Avoid all MSG as it will make you hurt more, I.e. Fast Food, canned goods, lunch meats, and flavored chips and snacks. Exercise is important too!! Low impact walking and stretching is a good place to start. I also listen to relaxation music and binaural recordings for relaxation and pain relief. There are several great apps that help a lot when you listen to them with headphones. I hope some of these suggestions might work for you. Gentle hugs:)

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Response to Terri
by: Renee

I'm so sorry to hear about your issues Terri. I have been lucky that I finally got my GP to make a FM diagnosis, reluctantly, and treatment with muscle relaxants and pain meds (Tramadol). The pain medication along with the relaxant works fairly well for me but I also know my trigger. Work stress which I have a lot of is my trigger. I've had a lot of personal tragedies over my life and the past 6 years included the suicide of my 9 year boyfriend.

I'm on meds and trying to find a new job to lessen my stress.

Have you tried Tramadol for pain? I take it every 6 hours 50 mg. It works without making me unable to work or interact.

I found a link that lists "good doctors" for FM treatment. Hope this helps.

http://www.co-cure.org/USA_IL.htm

All the best to you.

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I Need Help as Well
by: Terri Wabi

Submitted by: Terri Wabi

Need Help as Well

15 years ago I gave birth to the most wonderful twin?s boy and girl. Since then it went from just my spine hurting to pain all over from my fingertips to my toes. I have gone to every kind of doctor looking for help. I went to one rheumatologist and he said I have fibromyalgia and started me with all the medicines. From pain killers and muscle relaxants to anti-depressants. Nothing was working and I kept getting worse. He finally told me to go find another doctor who treats only fibromyalgia patients that he was done with me. He did all that he could do. Can't find a doctor that specializes in it. Since then I have had surgery on the right knee that went septic making my knee worse, surgery on left knee, ulnar nerve transposition on the left elbow. So with the fibro and all of these other surgeries, I am a mess. Now I go to a pain clinic once a month for Percocet and they just started me on Kadian (which is a morphine pill). Still I cry myself to sleep and I cry every morning when I wake up. I feel my life is over. I'm even having trouble taking care of myself. If someone knows anyone in the IL area that could help, I would be so grateful. I'm 47 years old and feel like my life is over. They say fibro can't kill you, but I truly believe it is killing me. How can someone live in so much pain? The doctors just look at you in a weird way because they can't understand themselves. I know my spirit has died already, I'm not living anymore, I am just existing!

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Shame on Physicians
by: Renee

I asked my doctor again today for his assistance. I've seen every specialist there is that would/could possibly relate to this and they all tell me ultimately a rheumatologist is who I need to see.

He saw me one time, did an xray and said "It wasn't what I thought. I don't know what it is". He knew I was losing my insurance and I desperately asked for his help before then but he just keeps literally ignoring my questions.

I asked if not Fibro and all other test are fine then what? What other specialist would he recommend? With all the symptoms (on your web site) what else should I consider this might be if not Fibro? NO ANSWER

I asked if minimally he could see me again to prescribe more meds to at least help me keep in under control and again....... no response.

I don't know if it's because I have no insurance or he just doesn't care. I think it is strange.

I finally got fed up and told him I thought it was unprofessional and asked how he could do that to a patient and he should consider how he relates or in my case doesn't relate to patients. Of course he didn't care but I've lost nothing as he wasn't going to help in any way so at least I said what I needed to.

Is there a reason doctors are afraid of a Fibro diagnosis? I don't understand this guy at all.

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Respond Beatrice
by: Renee

Thank you Beatrice. It has not been a good road so far and I'm so frustrated. I appreciate your comments.

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Respond to Anne
by: Renee

Thanks Anne

Took the test and it indicated 100%

Symptoms almost all match for a year

Given Gabapentin and didn't help. Given Tramadol
1- 50 mg every 8 hours which doesnt work.

1 every 4 hours helps but if pain is severe at night need 2 but it makes me feel almost worse while helping to relieve pain.

I'm a paralegal. Major stress and very overworked.
May lose job soon due to pain. Need diagnosis to adjust work schedule.

Dr seems afraid to diagnose but has nothing else from testing to explain

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Beatrice, I'm worried
by: Anne

Beatrice, I'm worried about those kitchen fires! In the book on fibromyalgia basic care, they explain the use of steam cooking to avoid that kind of problem for people like you suffering from brain fog. It?s time to take care!

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Renee, hold on!
by: Anne

Renee, you should take the free fibromyalgia test to find out what your fibromyalgia diagnosis probability is.

Follow this link


What kind of pain killer and what doses are you taking? Are you on any other medications? What do you know about fibromyalgia? What?s your line of work? Those are important questions to find out how we can help you.


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Stay Strong In The Rest of God
by: Beatrice Caraballo

Renee, oh my goodness...your story sounds so much like mine. I finally thought I had found the right doctor to help me out, but just this week he laughs and says to me, "I think this is all caused by your depression. You can't really be feeling this way." My daughter was with me and wanted me to walk out because she said that was so rude of him to not want to acknowledge my pain and suffering. I begged him to please check me out for the excruciating pain in the back of my head. I told him I don't have a migraine or headache but it hurts so bad. And the worse and scariest thing now is my difficulties when I am driving. He gave me Cymbalta and told me to come back in 4 weeks. I don't intend to go back to him, but now my search to get answers begins again. I am blessed to have a wonderful husband and 4 caring children that watch over me, but when they are all out and doing their things that is the scariest part. I have caused 2 kitchen fires because of my forgetfulness and I am scared that at times I can't even walk. Keep your faith and keep your search because I don't intend to let go of any of the two.

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