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what pain meds to take?
8 Replies
dannape - July 26

I know i've posted before, but instead of asking a new question on an old thread, i figured i would start a new one.

Just diagnosed last year, but in the past few months the back and especially the leg pain (absolute throbbing) to the point that i want to cut my legs off, has progressively gotten worse. the only pain med i'm on is tramadol (50mg). i take two at night, so the pain doesn't keep me awake.

recently my legs are starting to throb during the day, and i just don't want to keep increasing the number of tramadol i take, cause i know my body isjust going to need more and more.

the fms dr only put me on either nortriptyline or amtryptiline (i cant' remember which), and its supposed to help me get a good nights sleep (that is another whole issue altogether. they're only 10 mg each..started with one, that didn't work,i woke up around 2 or 3am..then upped it to 2, not much better, tried 3, and i was so sleepy til about noon the next day, and i can't be that way at work. i go to see him again at the end of august, obviously i will tell him all these things, but wondered what you guys thought?

I know i'm not near as bad off as a lot of you are, but i'm a weakling (apparently) when it comes to pain, cause i can't take it.

 

January - July 26

A lot of people do well with a combination of Ambien and melatonin for sleep. Plus you don't get the side effects of the antidepressant you are taking. Might run it by your dr.

 

dannape - July 27

Thanks January,

Maybe I will suggest ambien,when i see him next month. i did go to the health food store and bought melatonin, and that stuff knocked me on my butt...i could've slept 2 days straight, they were only 1 mg a piece, and the bottle said to take 5, and i thought, good lord, if i take 5, i'll be out for a week,,LOL

 

January - July 27

Hi dannape -- LOL! Good thing you didn't take 5mg melatonin the first time! I would guess that the reason you had such a strong reaction to it is that you are taking the other sleeping meds you referred to in your first post. You might check with a pharmacist about how these drugs interact with melatonin.

Everybody is so different. We all have to tinker with meds and dosages. If 1 mg of melatonin knocked you out, try cutting the pill in half, or even into quarters. The strength of medications can vary with the brand and the brand's formulation and how your body processes it - so listen to your body!

I read some research online that said melatonin was as effective as prescription sleeping meds. A lot cheaper too! I used to take Ambien, but you build up a tolerance over time and need more. Now I rely mostly on melatonin, and take 1/2 an Ambien - and more melatonin or Ambien if I wake up in the middle of the night.

Do you know about "light pollution?" Your brain needs darkness to make melatonin, so you should stay away from bright TVs and computer screens at night for a couple hours before you want to go to sleep (do as I say, not as I do, I get on my computer at night and stay up too late!)

Sleep is important. Good luck with it. And goodnight!

 

rnsarah32 - July 27

Just like to say that I posted on an old discussion about this, but I'm repeating it here to see if anyone will read it sooner.

Hello Everyone, I'm 25 years old and was just diagnosed with Fibromyalgia. I've had the pain, the fibrofog, sleep distrubances, and depression/anxiety for about 5 years now.

My Dr. thought it was simply Depression/Anxiety. I was on Lexapro, Wellbutrin, Cymbalta, and Zoloft, none were effective. The side effects of Cymbalta were just terrible and the other 3 worked to control the anxiety for about 6 months, but then would stop working.

At the same time when I was complaining about pain, my Dr. had me see physical therapy (which did nothing for me). I spent out of pocket to see a massage therapist and to work out to try to get the endorphins flowing and a stronger core..STILL didn't feel good. Finally he told me maybe I should get a breast reduction to help with my back pain...(my breasts are only C's!)

....Finally when I found a new Dr. I had X Rays and MRI's all of which were normal except I had a bowing of my spine (not large enought to be scoliosis) and a loss of the curvature of my cervical spine. Again, my new doc thought it was depreesion that contributed to my pain so he prescribed me a SSRI and told me to see a Chiropractor. I saw the Chiropractor so much that my insurance wouldn't cover it anymore. This same new Dr. also prescribed me meds for ADD (which was really fibrofog I guess).

FINALLY, about 2 months ago I saw a Rhuematologist who told me it was FIBRO...I never really looked into fibro, i thought it was more myofacial pain syndrome...anyway she prescribed me Savella. I weaned off of the Zoloft to prevent Seratonin syndrome and tried the Savella. It was terrible! I couldn't go to work after being on it for a week because I was so nauseous, high temperature, sweaty with chills. My head felt like it was going to explode (never felt this bad on a med before). I called the Rhum. and she told me to STOP taking it. She told me my only other option was Lyrica, but I told her no because I didn't want to gain the weight and cause MORE pain for myself. She told me that she couldn't help me then and I should see a psychiatrist (who would be better to get the right doses of these SSRI/SNRI meds to work for me) ....

but I just don't have the strength anymore to deal with this. So basically, I'm completely weaned off of everything and I don't know where to go from here.

I was considering just asking for old fashioned pain meds, but I've hinted at it a few times to my current Dr. and I just felt like he thought I was med seeking. I DONT KNOW AND I'M SOO FRUSTRATED!

I'd also like to add that I bought a TENS machine which helps a tiny bit, but I still don't feel the way I want to feel- NORMAL. The last thing I did was schedule an apt. with a Neurologist, but not sure what my options are.

Please give me some med advice or some words of encouragement. All I know is I'm in pain, I'm tired and I have no hope. I don't know how people have this for decades and are still functioning. Any advice, PLEASE?

Thanks,
Sarah

 

January - July 27

Hi Sarah, Sorry you are having a tough time getting treated. A lot of us go through a huge run around until we find someone who will work with us to find a good regimen. If a dr. won't listen to you carefully, and tweak your meds to the point where YOU feel comfortable and get some relief, move on. Ask around your community for names of good doctors. If you want to give your location, someone on here might know a good doctor for you.

The standard "fibro" meds only work for about half of us, according to information available online. Big Pharma has a huge interest in selling these antidepressant type drugs and is making a lot of money, so most doctors are pressured to prescribe them. They do work for many people. But for some of us they really do NOT work. Many doctors are not well informed about all the complications that can arise with these drugs. You may have to print off some information from the internet and take it to your doctor. There are many forums about fibro and the various drugs, including a lot of posts about bad side effects and difficult lengthy withdrawals. If you can't tolerate them, don't keep taking them. Google the drug name and "side effects" or "withdrawal" or "adverse reaction." I would not want to take Lyrica either, as it will almost certainly cause a large weight gain - that in itself brings problems, including more stress on joints that are already painful and other possible difficulties.

There are MANY natural alternatives, and a lot of us have experimented with them. You need to educate yourself and read up on the risks and rewards of these treatments. Talk to doctors and pharmacists. You might want to see a naturopath, massage therapist or an acupuncturist - or all 3. I feel it is important to try to figure out the cause of your fibro (not easy) - and try to keep your treatments simple. It's good to buy a notebook and start a journal of how you feel each day, track the treatments you try. Write down what you major complaints are. That will give you some evidence to take to your doctor. Most of the current heavily marketed drugs come with nasty side effects, short and long term. I'm repeating old information posted before, but google ssristories.com, the documentary "Making a Killing" about psychotropic drugs. Read the book "Your Drug May Be Your Problem" by Peter Breggins. You can get good information about drugs on the website peoplespharmaacy.com. I had a horrible time on SSRIs and SNRIs - nobody ever suggested the drugs were making me worse, but they were. I finally quit cold turkey, my decision.

My problem (and one that a lot of us have) was celiac disease. No dr. ever diagnosed me; I diagnosed myself. The results were so good from the diet, the drs. cannot deny them. Even my blood work normalized. You can read about topics by going to the blue "search" box on the right and entering a phrase in it, and hitting the search button. We've had lots of conversations about gluten free food helping us to relieve our pain. That works for some of us. Others have a variety of food allergies.

Also google Colorado Fibromyalgia Center and get to the page where they list a variety of different causes for fibro. Nobody really knows yet, but at least some people are considering it could be anything ranging from viral illness to physical or psychological trauma to genetic predisposition to Lyme Disease, etc. I have in the past tried antivirals, and they have helped with severe chronic fatigue and brain fog flare ups. I think sometimes we get infections on top of fibro, and you can get encephalitis (brain infection) from a mosquito bite, so this is not so far-fetched.

You might benefit from reading Jacob Teitelbaum's book Fatigued to Fantastic. I started experimenting with some of his ideas years ago, and they helped me a lot.

I now take SAM-e instead of antidepressants. This supplement helps with joint pain and mood. I take a variety of supplements for energy including DHEA and acetyl L-carnitine. I have found a rheumatologist who works with me and prescribes low dose pain meds for my pain which includes old back injuries. I cut the pills up and take the lowest possible dose to take the edge off my pain (and treat them very carefully!). An old doctor gave me Lidocaine patches for the pain in my lower back. If you can tolerate NSAIDs you could ask for a sample of Voltaren gel, which works well on joint pain. If you have musle cramps or severe anxiety an older drug like diazepam or flexaril may help you. You may have to experiment to find a pain medicine that works for you - sometimes one med will cause vomiting, but another med will work well.

As I said I maintain a STRICT gluten free diet which greatly reduced the myofascial pain. I had trigger point injections in my back of lidocaine - these were done by an MD acupuncturist. The injections, along with massage, cured the terrible pain I was having from those cramped up muscle knots. CURED it. I take melatonin and 1/2 Ambien to sleep. Everyday I take vitamins and minerals. I have had to try many different meds, to find the ones that are tolerated well by my body. I prefer to stay away from ALL the new heavily marketed "fibromyalgia drugs." In my opinion, they have too many serious side effects and no one knows what they do long term. Already, some of the original SSRIs are subjects of big lawsuits. I stick to older low dose drugs that have been on the market a long time. I have gotten better by doing my own homework and carefully trying out one supplement at a time (with the advice of my pharmacist). Stay away from mixtures of many ingredients that are advertised as fibro cures until you have tried the ingredients separately and know you can tolerate them. Be sure you read everything you can about them and use low doses and get medical advice from someone regarding drug and supplement interactions.

Old fashioned pain meds, in my opinion, are a valid treatment for fibro, as long as you are not an addictive type and you treat them with respect. I posted something I copied from the Merck Manual a few months ago. I'll try to find it and paste it here for you.

If you suffer from depression and anxiety, unless it's very severe, I'd suggest you find a GOOD talk therapist who is proactive and asks a lot of questions. I took the antidepressant drugs for years and was much more depressed on them than off. Also, withdrawing from those drugs is HORRIBLE.

It's late, sorry this is a little disjointed. Please ask if you have any other questions. This is a great group of people, and different things work for different folks. You CAN get much better, so please don't give up, keep trying. Come back and talk to us. Wishing you the best.

 

January - July 27

msarah - here's the post from late April of this year.

Here's what The Merck Manual (for medical professionals) 18th ed., pub. in 2006, says, p 1772:

"Opioid analgesics are useful in managing severe acute or chronic pain. They are often underused, resulting in needless pain and suffering, because clinicians often underestimate the required dosage, overestimate the duration of action and risks of adverse effects, and have unreasonable concerns about addiction… Physical dependence…. should be assumed to exist in all patients treated with opioids for more than a few days. However, addiction (compulsive use of a substance with craving and psychologic dependence) is very rare in patients with no history of substance abuse. Careful assessment before initiation of opioids should enable a physician to infer whether risk of abuse is relatively high. If it is, treatment may still be appropriate, but more controls…. are then used."

Depending on where you live - you may live in a medical marijuana state - many people have reported significant relief from a few puffs of marijuana. It helps with pain and with sleep. There are other ways you can prepare cannabis - it has a variety of medical treatments and was used for centuries before the government decided to make it illegal. Now they are taking out patents, and it will be coming to an (expensive) drug store near you in the future, no doubt chemically manipulated and with side effects you don't get from the natural substance. If you are interested in learning more, google it.

 

rnsarah32 - August 1

I live in PA :( I just moved from NJ last year which is now legal.

I've tried massage therapy, chiropractic care, physical therapy, magnesium supplementation, Vitamin D, gyms, TENS machines, and talking to a therapist. I think I'm gonna try to do this on my own. Like I said, I have an apt. with someone who specialized in acupuncture this week. I think I may also try trigger point injections.

I've been tested for Lyme's and Celiac's with normal blood work. However, I DO want to try the gluten free diet. It makes sense that it may help. It's going to be tough though because I live off that stuff. I don't have any of the GI symptoms that go along with Celiacs, but something in my mind is telling me this fibro thing has something to do with hormones or food allergies or both.

I'd also like to read up on those links you gave me. Thanks so much!
Have a good week.

 

January - August 1

Hi msarah - glad the posts were helpful. Just a note….

American doctors are NOT educated about celiac disease. Dr. Alessio Fasano is an expert who has enlightened many in this country. For years they thought it did not exist in the Western world. Then they were taught it was a GI problem. A LOT of celiacs do not have GI symptoms. You can google Dangerous Grains. They have a website - that book was what opened my eyes about the disease.

It would benefit everyone to stay off the highly processed poison that is causing the huge increase in diabetes and heart disease, etc. Just eat healthy food, it's not that hard. The amazing thing is you digest it better, and you're not hungry because your body has nutrients. Once you get used to a normal diet, those donuts and fast food things just look like cardboard… which is kind of what they are! LOL

It's always good to see someone making an effort to get educated about all the things this disease "could" be -- I think there are many different things wrong with us - but we get lumped under one heading "fibro," because we hurt and are exhausted. Good luck to you, just keep trying, and you will find what works. I am SO much better than I was, but it took a long time of trying different things. For me, the antidepressant meds were a nightmare. Wish I had never touched them.

Have a good week and good luck with the acupuncture - that can really help!

 

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