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I just can't sleep anymore! It hurts so bad.
15 Replies
lucidmana - March 19

Hello everyone,

I'm new to the forum and I haven't been officially diagnosed as of yet, I have full blood work in the morning to rule out several other conditions and who knows what the next steps will be. I have pain in all 18 tender points and ungodly, indescribable fatigue. Like, right now I'm scrunched up in my chair with the keyboard in my lap because I can't even lift my hands to the desk. On top of that I have really bad anxiety, an awful sore throat, uncontrollable shaking and night sweats, my feet are absolutely soaked right now, I feel so gross. I can't regulate my temperature at all, I'm sweating, dizzy and freezing all at once. I've read a few posts and this seems to be a major problem for a lot of you. I wish so bad that there were easier ways for us all to deal with this.
I apologize for babbling on about my symptoms when FMS hasn't even been confirmed for me, I guess I just feel so alone and unsure of anything right now. Is the pain constant for all of you as well? I have it all the time but it moves around constantly and varies in intensity through out the day. Nights are the worst. Like right now, I can never get into a deep sleep. Going on two months now of just 'semi-sleep.' And I just turned 27. I'm at my absolute wits end. :(


Noca - March 19

Have you tried sleep aids? There are many such as: Zopiclone, Lunesta, Rozerem, Melatonin, Trazodone, Seroquel, Starnoc, Ambien, Remeron, etc etc. Ask your doctor for something.


lucidmana - March 19

I'm terrified of most medications, I have a lot of sensitivities and usually experience the worst possible side effects. It figures. I would like to try something natural though, perhaps Melatonin. I'll definitely ask tomorrow at the Doctor.

Thank you kindly for your suggestions!


ptalana - March 19

Hi lucidmana, and welcome. I also have all 18 tender points, and my pain is constant. As for sensitivity to meds, yep got those too! Makes dealing with everything a challenge. I do however take pain meds, as I wouldn't be able to get out of bed without them. Getting the appropriate amount of sleep is imperative when dealing with Fms, even though we don't experience restorative sleep, our sleep patterns are fragmented. We don't normally wake feeling refreshed. The body does much of it's repairing during sleep. Finding a diet, exercise program, and medication regime that work for us is imperative. I take Flexoral (a muscle relaxant) at night to help me sleep. My problem tends to be being able to stay asleep, getting more than 3 hours for me is a challenge.
I am very careful with what I eat, stay away from nitrates, msg, fried foods, dairy, white flour, and processed foods. I also try to do a mild form of pilates 5 x a week, 20 min routine. This works for me as I have extreme mobility issues, pilates I do lying on my back, so I don't have to worry about falling. And I'm currently taking percocet, dilaudid, pantoloc, vitamin D, and flexoral these seem to be helping me handle the bulk of my pain. I don't expect to be totally pain free.
No need to apologize for getting things off your chest, that's what we're here for.
Sending you gentle hugs, Patty :)


bmcgovern - March 19

I do take Melatonin and it does help me sleep, but i still wake up through out the night, but it does help you get to sleep for a while.


Fantod - March 20

While you are waiting, go to the healthfood store and get some melatonin. This is used by people who travel a lot to combat jet lag. It should help with your sleep issues. I'd get the 1 mg dose and experiment to see how it affects you. You can safely go up to 3 mg. If you work, take it on a night when you have nothing to do the next day. Work your way up to a dose that knock you out. Make sure you understand how to use it and any risks associated with using Melatonin. Take care.


lucidmana - March 20

Thank you all for responding, it really helps to know there are people who understand and take me seriously, and believe me when I say it's not 'all in my head'!
I'm going to give Melatonin a try I think, I have to be careful though since I already take clonazepam for anxiety. It's one of the only meds I can take without any awful side effects.
My problem with sleeping is that once I actually get to sleep my heart races and the pain starts up in my legs. It's as though my brain won't allow me to relax and sends my body into panic mode. I always end up jolting awake feeling paralyzed as soon as I enter a REM sleep stage. I also find that because I've been so sleep deprived I go into a REM state faster, which wakes me up more often, and the vicious cycle goes on.


Noca - March 20

If you take Zopiclone for the first time, you won't be able to stand after 10 minutes from taking it. You most likely won't wake up due to pain. The drug only lasts 7-8 hours, no morning grogginess. The only noticeable side effect is a bitter taste in your mouth which goes away by noon.


axxie - March 21

You can always take benadryl this will help you sleep. No problem waking up in the morning. It helps when you are hurting all over and can't sleep as a last resort I would take them.

Actually until my trazadone I was on benadryl for the longest time because I could not fall asleep on my own.


Fantod - March 21

Hello lucidmana - I have a bit more time today so I am going to elaborate a bit more on your situation.

One of the reasons you are in so much pain is lack of restorative sleep. Your muscles need deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. This is one of the many "perks" of Fibromyalgia (FMS) which you may or may not have.
A sleep aid is a crucial part of treating FMS. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. The only way to get around this is with melatonin. or a prescribed sleep aid like Amitriptyline.

You really need to see a rheumotologist for a firm diagnosis. If you live in the states, go to the National Fibromyaliga Association website. Register and then you can see a list of fibro-friendly rheumys in your area. The other option is to call your local hospital physician referral service and ask them for a recommendarion to a rheumotologist and/or a pain specialist (I have both) who have an interest in FMS. Bear in mind that the longer a chronic pain cycle continues, the harder it is to stop or manage. Take copies of any recent bloodwork or other tests that you have had done to save time and money.

You should also be tested for a vitamin D deficiency which is quite common in people with FMS. This is a simple blood test. In addition, I'd seriously consider being tested for gluten sensitivity. The most accurate result is obtained from a stool sample. A blood sample may give a false negative result. It is possible to be gluten sensitive (me) without having full blown Celiac dissease. Either of these problems, will cause widespread pain. Finally, even though you are only 27, I'd have my hormones checked to be sure that they are not contributing to the extreme tempeture swings that you are experiencing. Eliminating possible causes is the best way to get down to the source.

Diet can also contribute to widespread pain. In addition to gluten, artifical sweetners can cause a lot of problems. If you use anything with artifical sweetner get rid of it now. If you need a sweetner, use someting made from the nontoxic Stevia plant. You can find Truvia and a couple of other products like it in any decent grocery store along side Equal etc. Deep fried foods, and lunchmeat (nitrates) can also ratchet up widespread pain.

FMS pain is variable. Everyone experiences it differently. That is why is can be so challenging to treat. Only certain classes of prescribed medication work to treat the pain associated with FMS. OTC remedies like Tylenol, Aleve etc do not work. YOu would be wasting your money and probably destroying your liver and stomach. There are now three primary medications used to treat FMS. Lryica has been used for a few years now. It is advertised on TV quite a bit. The most common complaint seems to be rapid weight gain. Cymbalata is a populare choice. It is an antidepressant that also addresses the pain association with FMS. I use it myself and have had decent results. I'm very sensitive to medication so I can only take 30 mg instead of the recommended 60mg. The newest medication is Savella which was approved by the FDA last year. It has been used in Europe for decades. High blood pressure seems to be an issue with this medication although some people seem to have very good results. I totally understand your medication issues as I am in the same boat. I always start off with the smallest dose available and work my way up slowly. Try to be open minded about this as life with no medication like you are experiencing now is no life at all. I manage my symptoms with a combination of prescribed medication and some holistic stuff. Finding a balance is hard and it will take some time to get it right.

The last thing I want to tell you is that you must be your own best advocate when it comes to managing a chronic health problem. Never let anyone browbeat you into thinking that it is all in your head. If you are not satisfied with your level of care, find someone else. There are still plenty of doctors out there (and we have all met at least one) who think FMS is a figment of our collective imaginations.

I hope that I have addressed some of your concerns and that my comments are helpful to you.
Take care, keep in touch and God Bless.


lucidmana - March 23

Thank you so very much for your incredibly informative response.
It definitely sounds like I have Fibro, though I know just because I have all the symptoms doesn't mean that's what it is. My Mother has it as well, and she's sure as anything that I have it too. Now I just have to play the waiting game and hope that my blood work doesn't turn up anything too scary. I'm always a bundle of nerves when waiting for any type of test result. I guess that's normal, but anxiety doesn't help the pain at all. :(

Thanks again Fantod, I truly appreciate that you've taken the time to help me better understand what might be happening to my poor body!


Fantod - March 23

lucidmana - If your mother has FMS than most likely so do you. It is inherited and does run in some families.

I get it from my Dad's side. He has a lot of the associated "perks" including restless legs, and Raynauds just not FMS itself. That, apparently, is my department....

I'm glad I could help sort out some of the confusion that you are feeling right now. If you have any other questions, let us know. We are all here to help. Keep in touch and take care.


Libbyk - March 23

hi i came across your post and found it very informative. Can i ask you what meds you are on, i have been on tramadol for about 3 years now which "gave me my life back" after trying various meds. My new doctor wants to take me off Tramadol and put me on Lycia. i am working with my doctor to wean off tramadol and am down to 4 50gm daily and my pain has come back, i am feeling very weepy and in need of a bit of support.


jrzgirl - March 23

I take melatonin, it seems to help me sleep some, I have been in so much pain for the last 3 days, 3 hrs sleep altogether,my anxiety level is off the charts.i cannot take alot of different meds due to allergies, try a warm shower, not hot and put on socks when you are cold,, I get half of my body hot the other half cold all at once. I have fibro, Raynauds and RSD, all I take is a mild pain med


Fantod - March 23

Hi LibbyK - I'm sorry you are having a difficult time. We have all been there at some time or another.

I'm glad my post was helpful to you. I am extremely sensitive to medication and allergic to a lot of antibiotics. Treating me is a nightmare. For Fibromyalgia (FMS) I take 30 mg of Cymbalata daily for pain and depression, 25 mg Amitriptyline for sleep plus some melatonin on top of that and 100mg of Gabapentin for leg pain which is also caused by degenerative disc disease.
For breakthrough pain, I use a homeopathic product made by Terry Naturally called "Curamin." It seems to work fairly well. Any decent health food store should have it or you can order it online. I also have NON narcotic Flector Pain patches which only work wherever they are applied and the medication does not enter your bloodstream. As you can see, everything I use is at the very low end of the spectrum. It took me a long time to figure out what worked and how much I needed. Once we got that sorted out and as long as I stay within my energy limitations for the most part I manage OK.

Personally, Lyrica would not be my first choice for a replacement of your current drug regimen. People seem to gain weight rapidly on that drug. For me, the prospect of being 20 + pounds heavier held no allure over any possible benefits I might get from taking it. I have bad knees, a suspect hip and failing discs - extra weight is not an option.

I would ask for Cymbalta or Savella which I discuss in my post to lucidmana. I've had decent results with Cymbalata and would probably be doing better if I could take a higher dose.

I did try Savella for three days and had an adverse reaction (no surprise there). Amazingly, I felt more like my old self after two days of taking it than I have in three years. The third day, I was hysterical over nothing and anything. It was kind of comical in a way but not while I was experiencing the roller coaster of emotions. I was really disappointed that I couldn't tolerate it. That took me a while to get over.

I hope that your new doctor will listen to you if you decide Lyrica is not an option. The weight issue was a deal breaker for me. Don't let him tell you that probably won't happen. I know three people who were on it and all of them put on 20-40 pounds within a couple of months. And they are all still struggling to get it off over a year later.

You should try Cymabala/Savella to see if they work. If not, I would hope your doctor will be open to reinstating your tramadol prescription. It is so tough to treat FMS; what works for one person does not necessarily work for another. If you find yourself saddled with someone who is not flexible and possibly has a professional bias towards narcotics even if they are carefully monitored - get someone else.

You can go to the National Fibromyalgia Association and register. Then you can see a list of fibro-friendly rheumys in your area. You can also call your local hospital physician referral service and ask them for a recommendation to a rheumotologist and/or pain specialist (I have both) with an interest in FMS. As I told lucidmana, you have to be your own best advocate when it comes to managing this syndrome.

Feeling isolated is a big part of FMS as everyone thinks you look good therefore you must feel fine. Try to find some simple things that you can do that will take your mind off of your pain levels. Focusing on pain definitely makes it worse. Ask more questions here - someone will reply. We are all in this together - you are definitely not alone. Wishing you better days ahead. God Bless.


Sonja44 - April 4

Fantod is spot need to become your own best advocate.

I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Fibromyalgia (FM) by my GP and good friend with whom I used to workout with prior to this illness.

Auto Immune disorders like one another...and when you have one...unfortunately you are prone to others. This web site is awesome with lots of information to help you. Another site is CFIDS Association of America. With my CFIDS...I have LOW blood pressure problems that cause significant know, like being vertical for normal amounts of time.

Anyway, after my diagnosis and learning more about my husband bought me a new bed...The 10" Tempurpedic (SP?) NASA bed. I love it!!!!!! I can't begin to tell you what a difference it made, for me, in terms of better I am on Amitriptyline. A whopping 10mgs...yes, I have sensitivities to meds too.

I hope you get some relief soon. You are not alone.



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