Is there really such a thing as “long story short?” Not in my life, there isn’t. Ha. But I’ll try.
I had a traumatic fall 3 years this month - I slipped in orange goo on the floor of a store, my feet went out from under me and I landed on my bum. So hard that I blacked out for a few seconds. At the time I didn’t feel any pain; and then I regretfully didn’t file an accident report with the store. However, I started feeling uncomfortable whenever I sat for more than 15-20 minutes. In August I got a job in the city that would take 90-120 minutes drive time and I sat ALL day long at the job. Within three weeks, my back & legs had enough. I was at work one day and my back seized up. It felt like what happened when I had a herniated disc in my neck. Since then, my back (lumbar) and legs have never been the same. I’ve never been the same! I’ve had 10 procedures on my back with very little relief. Since 3 MRIs don’t show anything to explain all of my debilitating and agonizing pain, my pain doctor said I needed to go to a rheumatologist to see if they could find out the source of the pain. After 3 long, painful, difficult, and lonely years I think I finally have the answer to all of this - fibro.
Needless to say, I was shocked and happy at the same time. Actually, I was elated! Not just at having a diagnosis but at having a doctor who FINALLY listened and believed me.
I’ve been doing some reading about fibro and it seems like I’ve been having some minor symptoms of it over the years. I just didn’t know it. I went to the dr for various things but nothing was as major as my pain so no one thought about fibro being the culprit. Oh the things our bodies do to us!!!
I’m going to my family doctor soon to start the meds; the rheumatologist is too far away to see regularly. I prayo g really hard that the meds will help alleviate the pain. And these headaches and migraines! I’ve had this headache for 7 days now! Nothing helps. It flared into a migraine on Monday but that didn’t actually stop the headache.
I am looking forward to learning more about fibro, making friends here, and learning ways to cope and ease all of the symptoms. I’m starting foam roller exercises, stretches and massages tomorrow. I hear that’ll help ease the muscle pains. I hope so!!!
If anyone has suggestions for these relentless headaches, please let me know. I’ve gone through my arsenal of tricks to no avail. : /
Hi Kimberly, welcome! Glad you found the site. I recently started using a foam roller and it does help once I can get past the pain. For me, massages are wonderful (some people can't tolerate) and I am looking forward to being able to schedule another one some day. Hugs.
Hi Kimberley, it took me 6 years to be diagnosed. At first I got the impression from Doctors I was making everything up. It wasn't until I kept going back (demented) and my wife dragging me round after 5 days without a minutes sleep!!! that they started doing tests. They tried everything before sending me to a specialist who explained everything. Caused through many years of heavy lifting and an accident at work - left with permanent muscle damage that would cause trigger points. Things got worse from there. I am still today just learning to cope with it. I can live with pain but the restlessness - no!!!
It does get easier though. I think your body learns to adapt.
Hi Kimberley,
I’ve had migraines and migraineous headaches since I’ve been in my early teens and suffered with them without respite until the GP I’m with now sent me to a neurologist. I was prescribed Amitriptyline 10 mg a night. Although I still have migraines and headaches they are no where near as bad as they were…been on them for over 15 years now. The dose was increased to 30mg by my Rheumatologist when I was diagnosed with Psoriatic Arthritis (PsA). I was diagnosed with Fibro a few years after that when, although my PsA appeared to be I remission, I was still in alot of pain and had really bad fatigue. Started on Gabapentin and can cope on 900mg a day and feel a lot better. I also have been able to increase my exercise by reducing my work hours, so have found a better balance although money is a bit tight.
Try acupressure on your headaches. Just google it and you will find where to put your fingers. It saved my life during a terrible migraine. It was the only thing that gave me relief. Tina
I haven't even been diagnosed for a year, but I'm doing much better since getting my diagnosis. Magnesium actually helped my headaches, which were mild by fibro standards and triggered by Vitamin D supplements, probably due to my body using up my magnesium stores processing the Vitamin D. Magnesium is often low for folks with fibro - even if it's not causing your headaches, it probably wouldn't hurt to talk to your doctor about supplementation or take some baths with epsom salts.
Antidepressants + sleeping pills also helped a lot with my muscle pain. Actually, having the pain go away when I started taking the antidepressants was the first big clue that I didn't have a repetitive stress injury like carpal tunnel, but maybe had fibromyalgia instead.
Hi Ethel, someone recently told me about Magnesium however when checked it was fine. It was my vitamin D I lacked. In fact as my Dr put it - it was below my boots!!!! It has helped a lot with fatigue but nothing else!! As for sleeping pills, unfortunately I work with Substance Misuse and I see a lot of bad cases due to sleeping pills and yes I know this is people abusing them but my fear is becoming dependent on them!!!! Some meds have worked but left me feeling drained like a zombie which is not a good luck when at work!!
But yes I agree vitamins do help. Ethel said:
I haven't even been diagnosed for a year, but I'm doing much better since getting my diagnosis. Magnesium actually helped my headaches, which were mild by fibro standards and triggered by Vitamin D supplements, probably due to my body using up my magnesium stores processing the Vitamin D. Magnesium is often low for folks with fibro - even if it's not causing your headaches, it probably wouldn't hurt to talk to your doctor about supplementation or take some baths with epsom salts.
Antidepressants + sleeping pills also helped a lot with my muscle pain. Actually, having the pain go away when I started taking the antidepressants was the first big clue that I didn't have a repetitive stress injury like carpal tunnel, but maybe had fibromyalgia instead.
Hello and welcome! I had a car accident that set all of this off, but I too think I had symptoms all along as well.
For the headaches that I was having, my neorologist put me on a cocktail of vitamins first, and then on Pamelor too, when just the vitamins didn’t help. The vitamins I take are magnesium, vitamin D, and vitamin b2. It’s hard to find the b2 alone for some reason, but gnc brand has it so they usually have it at rite aid. I would ask your doc if you could try that for headaches if you can’t see a neorologist. A word of advice is watch your GI system. I would get on a “high powered” probiotic before you start going on needs. There’s a liquid called InnerEco that is really good and a capsule form called Ultimate Flora. The second one is sold at Target over the counter. They are far more potent than yogurt- lol. The point though is that they help keep digestion in line because alot of the prescriptions you may get can really do a number on your digestive track. I now have chronic constipation to the point that I have to take Linzess (an RX) in works for me in a way, but after I finally “go” (after days of not), I usually end up getting diarrhea. It is a visious cycle. So try to get your digestive track in tip top shape before you start a bunch of meds. Also, drink, drink, drink (water of course! Lol!)! I have an app on my phone that reminds me to drink water every half hour. It is supposed to help the headaches and everything else. Hope this helps!
I am also confused… I was put on Vitamin D (and Magnesium and Vitamin B). I thought the vitamin D was to help my headaches. I am so confused! Lol!
Does anyone else take Pamelor?
I was talking sleeping pills, but i found that taking Melatonin, with my other nighttime meds, was enough. And this was after having major trouble sleeping.
Ethel said:
I haven’t even been diagnosed for a year, but I’m doing much better since getting my diagnosis. Magnesium actually helped my headaches, which were mild by fibro standards and triggered by Vitamin D supplements, probably due to my body using up my magnesium stores processing the Vitamin D. Magnesium is often low for folks with fibro - even if it’s not causing your headaches, it probably wouldn’t hurt to talk to your doctor about supplementation or take some baths with epsom salts.
Antidepressants + sleeping pills also helped a lot with my muscle pain. Actually, having the pain go away when I started taking the antidepressants was the first big clue that I didn’t have a repetitive stress injury like carpal tunnel, but maybe had fibromyalgia instead.
What you are on is the same as me- Pamelor is the brand name for it. Did you have any major weight gain on it? I also have psoriatic arthritis on top, and so right now I’m on steriods and methotrexate as well as Pamelor, Cymbalta and supplements and vitamins… long story short, i started the methotrexate, steriods and pamelor at about the same time (this January) and since then I’ve gained thirty pounds. My one doc said it us from the steriods, but i saw online that the Pamelor causes it. Any thoughts? The reason it bothers me is because it has made it harder to exercise, I feel terrible, etc. I should be going off of the methotrexate and steriods soon and switching to humera. Ugh.
Pookie said:
Hi Kimberley, I’ve had migraines and migraineous headaches since I’ve been in my early teens and suffered with them without respite until the GP I’m with now sent me to a neurologist. I was prescribed Amitriptyline 10 mg a night. Although I still have migraines and headaches they are no where near as bad as they were…been on them for over 15 years now. The dose was increased to 30mg by my Rheumatologist when I was diagnosed with Psoriatic Arthritis (PsA). I was diagnosed with Fibro a few years after that when, although my PsA appeared to be I remission, I was still in alot of pain and had really bad fatigue. Started on Gabapentin and can cope on 900mg a day and feel a lot better. I also have been able to increase my exercise by reducing my work hours, so have found a better balance although money is a bit tight.
I would make sure that fibro is your “only” issue. Many of us have more than one thing. I was diagnosed with fibro and then about a year later i was diagnosed with Psoriatic Arthritis. But it was also a possibility that i could have had lupus based on my blood work. That’s why you really need extensive blood work done and it is really important to see a rhemotologist. Maybe you could “see” one online if they are too far to get to. There is a new web md app that does it I think. There are also others. I bet you could talk to one over the internet. My Rheumatologist is at temple University and I see her once a month for a visit and blood work. And xrays at times. I saw three before her that were supposed to be good, but really were terrible. She listened to my whole history and I can send her emails through a portal that they have. She really made me able to work again. Not that it’s easy, but before that i couldn’t get out of bed most days before her. I think you could probably get some online appointment or something.
I am also confused... I was put on Vitamin D (and Magnesium and Vitamin B). I thought the vitamin D was to help my headaches. I am so confused! Lol!
Eve, the Vitamin D itself wasn't causing my headaches per se, I'm pretty sure. However, in my case, I think I had low magnesium as well, and apparently Vitamin D supplements use magnesium to be absorbed or used or something - so it was actually the low magnesium that was causing the headaches for me. I started taking Magnesium with my Vitamin D and reduced my Vitamin D dosage to what I could handle, and the headaches went away. For me, 1000 to 2000 IUs a day seems to be my current limit, but that should go up as my magnesium stores recover. My point wasn't to avoid Vitamin D, but to talk to one's doctor about taking magnesium with it (if one isn't already) if getting headaches that correlate with taking Vitamin D.
I'm pretty sure Vitamin D helps with low seratonin that can cause headaches as well as a lot of other aches and pains, and should help in general. But it was clearly triggering headaches for me at 1000 IUs a day after about two weeks of use, and when I added magnesium I was able to tolerate it much better.
I had a lot of blood work done before I went to the rheumatologist, to rule out Lupus, etc. I do have other conditions but I don’t think they’re responsible for the drastic increase in my headaches and migraines in the last year. I’ve had the other conditions for awhile now and they’re well controlled. I’ve had bad headaches & migraines since I was a teen. When I was diagnosed with PCOS 7.5 years ago and started treatment for it, they pretty much stopped. I had really high testosterone and other things were out of whack because of that and that all contributed to my headaches & migraines. I was pretty much free from them for 6.5 years; with an occasional one due to the drop in barometric pressure; until last year. Since then, I have one or the other several times a week! That, on top of my pain and chronic fatigue = a very BAD day. : /
I’ve had a bad headache almost everyday in the last 2 weeks. And 2 migraines during that time. The headaches are so bad that when I stand up, my head feels like it’s going to explode and I feel like I might vomit. I’ve been in bed almost every day for the last 2 weeks.
I had an appointment with my family doctor to go over the fibro diagnosis, to talk about how I want to treat it, and the headadaches and migraines. But I had to cancel the appointment. Twice. Because of the headache and today when it progressed into a migraine. I’m going to ask him to check my magnesium, B’s, D’s etc levels. I’d rather start there than add more medications to my list and risk even more side effects. I can be uber sensitive to medications. I can’t even take them at the same time - I have to take them about 30 minutes apart.
I am taking 800mg of magnesium now but it’s obviously not enough for the headaches & migraines.
Thank you, everyone, for your suggestions. I will look into each of them.
Eve, I am not taking any Fibromyalgia medications at this time. I am trying the Guafenesin protocol by Dr. St. Amand first. For my pain I take Tramadol ER 300mg daily and a few other pain meds as needed. I try my best to avoideds that can cause weight gain - that’s not something I want to deal with. And extra weight will mess with my PCOS.
I just need something to help calm down all these ridiculous headaches and migraines. Having a bad headache for 7+ days non-stop is really difficult to handle. None of the over the counter medications work anymore. And I already take 800-1200 mg of magnesium everyday. It’s getting really bad.
Eve said:
Kimberly,
What you are on is the same as me- Pamelor is the brand name for it. Did you have any major weight gain on it? I also have psoriatic arthritis on top, and so right now I'm on steriods and methotrexate as well as Pamelor, Cymbalta and supplements and vitamins... long story short, i started the methotrexate, steriods and pamelor at about the same time (this January) and since then I've gained thirty pounds. My one doc said it us from the steriods, but i saw online that the Pamelor causes it. Any thoughts? The reason it bothers me is because it has made it harder to exercise, I feel terrible, etc. I should be going off of the methotrexate and steriods soon and switching to humera. Ugh.
Pookie said:
Hi Kimberley, I've had migraines and migraineous headaches since I've been in my early teens and suffered with them without respite until the GP I'm with now sent me to a neurologist. I was prescribed Amitriptyline 10 mg a night. Although I still have migraines and headaches they are no where near as bad as they were........been on them for over 15 years now. The dose was increased to 30mg by my Rheumatologist when I was diagnosed with Psoriatic Arthritis (PsA). I was diagnosed with Fibro a few years after that when, although my PsA appeared to be I remission, I was still in alot of pain and had really bad fatigue. Started on Gabapentin and can cope on 900mg a day and feel a lot better. I also have been able to increase my exercise by reducing my work hours, so have found a better balance although money is a bit tight.
Just a reminder to be sure to talk to your doctors before starting any supplements. Supplements may be natural, but that doesn’t exclude them from being potentially harmful.
Hi, Just a reminder to be sure to talk to your doctors before starting any supplements. Supplements be natural, but that doesn't exclude them from being potentially harmful.
Hi, Just a reminder to be sure to talk to your doctors before starting any supplements. Supplements be natural, but that doesn't exclude them from being potentially harmful.
I know. But Guafenesin isn't a supplement like say, Feverfew, Fish Oil, etc. It's the main ingredient in Mucinex so I've actually used it before when I had colds, etc. It's a medication that has been around for over 500 years and has no known side effects or drug interactions. I feel a lot more comfortable trying this than I do taking medications that have only been around for a few decades. Plus, I don't want to take an antidepressant when I'm not even depressed. That just doesn't make sense to me. I know it can help block the messed up pain signals but still - I'm not depressed. And I just don't see how the 3 FDA approved medications can help me with all the other fibro symptoms I have. From what I've been told, they only block the pain. They won't help with the flu like feelings, the low grade fevers, the excessive sweating, the lightheadedness, the nausea, etc. Plus, I've been told they can have a lot of side effects. Something I just can't handle right now. The Guafenesin protocol by Dr. St Amand is what makes the most sense to me right now. My doctor has already "ok'd" me to try it - it won't interfere with any of my medications. I've been doing it for 2 weeks now and the only thing I've experienced is a runny nose for a few hours after I take it but that's nothing compared to the side effects of the more common fibro medications.
Eve, I am not taking any Fibromyalgia medications at this time. I am trying the Guafenesin protocol by Dr. St. Amand first. For my pain I take Tramadol ER 300mg daily and a few other pain meds as needed. I try my best to avoideds that can cause weight gain - that's not something I want to deal with. And extra weight will mess with my PCOS.
I just need something to help calm down all these ridiculous headaches and migraines. Having a bad headache for 7+ days non-stop is really difficult to handle. None of the over the counter medications work anymore. And I already take 800-1200 mg of magnesium everyday. It's getting really bad.
Eve said:
Kimberly,
What you are on is the same as me- Pamelor is the brand name for it. Did you have any major weight gain on it? I also have psoriatic arthritis on top, and so right now I'm on steriods and methotrexate as well as Pamelor, Cymbalta and supplements and vitamins... long story short, i started the methotrexate, steriods and pamelor at about the same time (this January) and since then I've gained thirty pounds. My one doc said it us from the steriods, but i saw online that the Pamelor causes it. Any thoughts? The reason it bothers me is because it has made it harder to exercise, I feel terrible, etc. I should be going off of the methotrexate and steriods soon and switching to humera. Ugh.
Pookie said:
Hi Kimberley, I've had migraines and migraineous headaches since I've been in my early teens and suffered with them without respite until the GP I'm with now sent me to a neurologist. I was prescribed Amitriptyline 10 mg a night. Although I still have migraines and headaches they are no where near as bad as they were........been on them for over 15 years now. The dose was increased to 30mg by my Rheumatologist when I was diagnosed with Psoriatic Arthritis (PsA). I was diagnosed with Fibro a few years after that when, although my PsA appeared to be I remission, I was still in alot of pain and had really bad fatigue. Started on Gabapentin and can cope on 900mg a day and feel a lot better. I also have been able to increase my exercise by reducing my work hours, so have found a better balance although money is a bit tight.
Pookie, What do you do when you are having a headache or migraines? I am in need of finding something or many things to try when I am having them because nothing helps anymore. Ice packs on my head, heated wraps around my neck, hot showers and baths, a neck & head massage - they no longer do the trick. I'm working with my doctor to find something to prevent them but until we find that, I need more ways to help ease them when they show up. Especially when they last for several days. I can't even begin to think about returning to work based on these frequent and long lasting headaches and migraines alone. : /
Hi, Kimberly.
I am glad to hear you have discussed the guaifenesin with your doctor. It is always best to get advice from your doctor ahead of taking any medications or supplements. I can understand you are leary of the FDA-approved medications for Fibro as they have potential side effects, but in the interest of promoting awareness, I did want to share this past discussion which includes a consumer alert on the Guaifenesin Protocol-
Hi, Just a reminder to be sure to talk to your doctors before starting any supplements. Supplements be natural, but that doesn't exclude them from being potentially harmful.
I know. But Guafenesin isn't a supplement like say, Feverfew, Fish Oil, etc. It's the main ingredient in Mucinex so I've actually used it before when I had colds, etc. It's a medication that has been around for over 500 years and has no known side effects or drug interactions. I feel a lot more comfortable trying this than I do taking medications that have only been around for a few decades. Plus, I don't want to take an antidepressant when I'm not even depressed. That just doesn't make sense to me. I know it can help block the messed up pain signals but still - I'm not depressed. And I just don't see how the 3 FDA approved medications can help me with all the other fibro symptoms I have. From what I've been told, they only block the pain. They won't help with the flu like feelings, the low grade fevers, the excessive sweating, the lightheadedness, the nausea, etc. Plus, I've been told they can have a lot of side effects. Something I just can't handle right now. The Guafenesin protocol by Dr. St Amand is what makes the most sense to me right now. My doctor has already "ok'd" me to try it - it won't interfere with any of my medications. I've been doing it for 2 weeks now and the only thing I've experienced is a runny nose for a few hours after I take it but that's nothing compared to the side effects of the more common fibro medications.
Hi, Kimberly. I am glad to hear you have discussed the guaifenesin with your doctor. It is always best to get advice from your doctor ahead of taking any medications or supplements. I can understand you are leary of the FDA-approved medications for Fibro as they have potential side effects, but in the interest of promoting awareness, I did want to share this past discussion which includes a consumer alert on the Guaifenesin Protocol-
Hi, Just a reminder to be sure to talk to your doctors before starting any supplements. Supplements be natural, but that doesn't exclude them from being potentially harmful.
I know. But Guafenesin isn't a supplement like say, Feverfew, Fish Oil, etc. It's the main ingredient in Mucinex so I've actually used it before when I had colds, etc. It's a medication that has been around for over 500 years and has no known side effects or drug interactions. I feel a lot more comfortable trying this than I do taking medications that have only been around for a few decades. Plus, I don't want to take an antidepressant when I'm not even depressed. That just doesn't make sense to me. I know it can help block the messed up pain signals but still - I'm not depressed. And I just don't see how the 3 FDA approved medications can help me with all the other fibro symptoms I have. From what I've been told, they only block the pain. They won't help with the flu like feelings, the low grade fevers, the excessive sweating, the lightheadedness, the nausea, etc. Plus, I've been told they can have a lot of side effects. Something I just can't handle right now. The Guafenesin protocol by Dr. St Amand is what makes the most sense to me right now. My doctor has already "ok'd" me to try it - it won't interfere with any of my medications. I've been doing it for 2 weeks now and the only thing I've experienced is a runny nose for a few hours after I take it but that's nothing compared to the side effects of the more common fibro medications.
thanks for the info. For now I'll continue to try the protocol and see what happens. Because so far I am seeing improvement. The FDA medications can't do anything for any of my other symptoms except for my pain. That's not enough to get me back to work and to get my life back.