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Is this a flare or how it's going to be?
26 Replies
pam80 - November 23

First I want to thank everyone who has responded to my posts and given me good advice. I appreciate it so much as I don't have much support from my family and friends.

For the past week, I have been experiencing horrible burning pain, headaches and neck pain, my muscles have been tighter than they’ve ever been, heartburn and trouble breathing. Within the past month, it seemed that more symptoms were developing. First, it was lower back pain, the next week was leg pain, then one day I woke up and felt like I couldn’t move. That was about a week ago. Since then, every minute of the day, I’ve had tingling and burning all through my body plus the other symptoms that I mentioned. Basically my whole body hurts. It seems as if my fibro symptoms hit me pretty quickly (except for the headaches

I realize that widespread pain is what fibro is but am I experiencing a flare or is this what I am in for? Is there hope that the symptoms will lesson to a manageable degree because right now they are extremely debilitating. I am taking Neurontin 400 mgs 3x a day, Cymbalta 30 mgs (just started), Amitryptiline (just started).

I am going to start water therapy soon but it’s hard to want to exercise when you feel so horrible. I am new at fibro so I really don’t know what to expect and feel depressed about it. My parents are not very supportive and my sister thinks it’s all in my head. I printed out info and showed them but they still think that it’s my depression causing the pain.

Any feedback would be much appreciated!


Also, has anyone tried suboxone for pain control?


fishingflorist - November 24

Just wanted to say sounds like we are having the say week! My post is almost exactly like yours. Just wanted you to know your not alone!


pam80 - November 24

Thanks fishingflorist! You're not alone either.


Stacey373 - November 24

Hi Pam80 - I see on your list of meds that you aren't taking any kind of prescription pain meds. I know cymbalta is supposed to help with the fibro pain...but it seems to me that isn't enough and you should also be taking pain meds. You should really talk to your doctor about it ASAP. I guarantee you will start feeling a little better if you can get some of the pain under control.

Some major things you need to remember when it comes to fibro....stress will only make you feel worse. I know it's hard to get rid of stress...but you need to find a way to lessen the stress in your life. I'm the kind of person who stresses over EVERY thing. but recently I decided I wasn't going to stress over the holidays or money or whatever! I can't control these things and me stressing over it is not going to make anything better....I'm only making myself feel worse.

Another thing you need to remember is DON'T push yourself. Even if you feel good one day...don't push yourself to get things done or whatever because it will make you feel worse. For me this is a hard thing ....I've got 3 kids and a husband and many animals and they ALL depend on me to take care of them. but whatever you have in your have to always remember that you need to take breaks and sometimes you just CAN'T get done what you need to do. And your family should be supportive enough to understand this and help you.

If your family isn't supportive...I guess the only thing you can do is let it go. what I mean is that you can't MAKE them you need to just focus on yourself and to hell with them! LOL I spent alot of years trying to convince EVERYONE that it wasn't all in my head and what I was feeling was REAL. When I finally decided to QUIT trying to convince them...I felt like I had a huge weight lifted. Instead of focusing on what they were thinking all the time...I started focusing on how I was feeling.

I hope my suggestions will help you to feel better. Take Care, Stacey :o)


Stacey373 - November 24

Oh! I forgot to also tell you that you may be going through a flare right now. Once really need the pain meds to try to stop this before it gets worse. Sometimes it's hard to know if you're going through a flare up or if you've gotten worse or what the heck is going on! I have been doing really bad for the last few months and I thought maybe this was just me getting worse or something. but now I'm feeling better suddenly and I think I was actually just having a flare that lasted for a really long time!

It's hard to figure this illness out. It keeps changing on me and from reading other posts on here, it sounds like I'm not the only one who is feeling like this.


Fantod - November 24

pam80 - What kind of water therapy will you be starting? If it is a regular water aerobics class that would be a very bad idea. You should be in a class for arthitics which is more slow moving. Like most of us, you are probably not conditioned anymore for a high energy class of any kind. This is something that has to be worked up to VERY gradually. And, you may never be able to participate in a regular high impact class again.

Tai Chi is recommended for FMS. You can get a DVD and do it at home. It is very good for stress and the slow, stretching movements are perfect for FMS. Walking is also good.

It sounds like you are going through a flare right now which is not being helped by your living situation. If your family can not be supportive than they need to keep their opinions to themselves. Stress of any kind will make FMS symptoms much worse. Apparently, your meds have not kicked in yet. This is not unusual. It can take a couple of weeks or longer. GERD is another "perk" of FMS. You can take Zantac or Prilosec for that.

I hope that you start feeling better soon. Starting out with this health issue is so difficult as it seems to take forever to get anything resolved. I hope that you can enjoy Thanksgiving. Take care.


pam80 - November 24

Thanks Fantod and Stacey for your feedback. I guess I am going through a flare, I'm not sure. Today I didn't havr the burning pain too bad but my lower back and neck hurt plus I have a killer headache. I grind my teeth at night- just started cymbalta and I think it's making me grind worse. Antidepressants have that affect on me. I've also noticed that my short-term memory isn't that great. I just read some of these posts and they scare the crap out of me. Are there any good days like ones with minimal- no pain? I'm a worrier which doesn't help-I worry about getting worse, not being able to live a "normal life", will a guy want to deal with me always in pain?

My dr. won't give me painkillers-he said I can manage without them. I am going to a new dr next week- a rheumatologist. I plan to ask him for some paid meds but I'm afraid of getting addicted.

Stacey-youre right about the just makes it all worse. I'm so sick of trying to explain myself to my family. It's my sister and mom who get frustrated with me and think that it's always in my head or that if I tried harder to do things. You said that when you stopped trying to convince everyone that it's not all in your head how do they react when you have to take it easy? I know that you said the past few months have been tough for you. Overall though, have things gotten better for you since you got diagnosed? I know that everyone is different, but I guess I just want to know what to expect. Stress is a big deal with me-i feel like I'm chronically stressed, depressed and worried. I guess I need to learn how to control my stress. Is it possible to be happy?

Fantod- the class that I'm going to take is for arthritis. I do have hopes that ill be able to run again someday but maybe that's high hopes? Is yoga good for fm? What about pilates?

How can I get my dr. to prescribe pain meds? What works the best?

Thanks so much-Pam


Stacey373 - November 25

Hi Pam - Ya know at first, I was really worried about what everyone would think of me if I wasn't doing what I "should" be doing. I constantly felt guilty for feeling like I was letting everyone down and feeling like I was just being lazy.

I was fighting this illness for about 1 1/2 years after I got diagnosed and I basically ended up having what I called a "mini nervous breakdown." that was when I got on-line to try to find some answers and found this forum. The first week I just read the posts and cried...especially when I read one that is called "a letter to normals" and then one day my husband was sitting here and I got on here and I started reading the posts to him. I could barely get through a whole one cuz I was crying so much. That's when he realized how much this was affecting me and he started to finally understand what this illness really does to us. He even admitted that he did think most of it was in my head (more like he thinks it can be a "mind over matter" thing) and he admitted he thought at times I was just being lazy.

That was our "turning point" in all of this...but I still felt so guilty and worried what everyone thought. (my husband was the only one who was trying to understand...friends and other family still didn't really care) and I finally decided to quit trying to convince everyone that I was REALLY ill or whatever. I quit caring what they all thought if they came to my house and it was destroyed and I'm sitting on the couch doing nothing because I was hurting so bad that day.
Instead I was able to focus on myself and eventually most of them have quit treating me like I'm a hypochondriac or lazy or whatever.

I guess it really comes down to you finally deciding that what they think just doesn't matter anymore. It's really hard to do, but once you do get to that point, you will feel alot better (mentally). I realized I was only making myself feel worse by constantly worrying what they all thought and constantly trying to get them to believe me and the truth is....they don't want to understand or at least you can't MAKE them.

You just have to stand up for yourself and say NO! Or when they ask why you aren't doing this or that....just keep explaining to them what the "consequences" are for you if you do it. Every time they bring it up or try to give "advice"....keep explaining what this illness is and how it affects you.

I have to believe that if they love you, they will eventually accept you for the way you are and quit trying to change you into what they WANT you to be.

I hope this all makes sense! LOL I get going and then I don't know if I'm saying it all the right way! Take Care, Stacey :o)


Fantod - November 25

Pam - Yoga is also very good for FMS. Pilates is also a possibility but that would have to be taken very slowly. Some people can run but they are few and far between. I'm glad that your water class is for arthitics. We've had a couple of people who went to regular water aerobics classes. The end result was not pretty.

Your headaches, shoulder and neck pain are probably from your teeth grinding. You need to see a dentist that specializes in TMJ and have a custom bite splint made. This is protect your teeth from excessive wear and relax your jaw at night. I've had TMJ for over 20 years and it can cause a myriad of problems. I have had extensive restoration work because of the the TMJ damage. Head, neck, arm, facial and shoulder pain are all part of equation. You can use moist heat and a muscle rub to help out.

I respectfully disagree with Stacey about pain meds. You have not been on your scripts long enough for them to become effective. In any event, the rheumy is probably going to try different combinations, doseages and other non narcotic medications first. Everyone is different so there is no set formula for what may work well for you. It takes time and tinkering to get that worked out. If the end result is that you need narcotics than so be it. My opinion on the addiction issue is that if being addicted means that you have some quality of life who cares.... Unfortunately, most doctors don't get grasp concept.

For short term memory issues you can get a supplement called "phosphatidylserine" which was recommended to me my by nutritionist. The best deal I have found is through Puritans Pride on line. They have really good sales. They call it "Neuro-PS."

Again, if you are not seeing someone, I'd like to gently suggest that you find a counselor to give you some tools to deal with your situation on several levels. I think that you already know that you are really struggling and not finding a way to deal with any of it. The extra support from a non biased person would be a blessing for you. And yes, it is possible to be happy. I have a very supportive partner.

Things will get better but you have got to give yourself and the doctors time to work out the best treatment regimen for your needs. Once a treatment regimen that works is identified your pain level will improve. Incidentally, would it help if your mother went with you to see the rheumy Sometimes, taking a family member to hear the reality of your situation directly from a doctor makes a difference. Also a second set of ears is always good when you are under a lot of stress and maybe not grasping everything that is said during a medical visit.

Take care and I hope that you have an enjoyable and relaxing Thanksgiving.


Fantod - November 25

Pam - I think that I mentioned this to you before. Curamin is very good for breakthrough pain. It is in a highly purified form in capsules. I use a brand made by Terry Naturally which you can find online or in a good health food store. I take it along with my prescribed medication and have had very good results. Take care.


Stacey373 - November 25

I apologize...I totally agree with Fantod about the pain meds...I guess I wasn't saying it right (again!) What I meant was that if the cymbalta doesn't work for the pain and you can't find anything else....then you need to get to the doctor and get something that will work for you. If you aren't able to "control" the pain you are only going to keep feeling worse.

And yes, the doctor is going to start off with very minor medications to see what works well for you. It's definitely a "process" we have to go through, but hopefully you will be able to get it figured out sooner rather than later.

Take Care....


pam80 - November 26

Stacey-how do you do it with 3 kids, a husband and animals to take care of?-wow! You deserve a star! Do you work too? I am glad that you are feeling better after months of not feeling so well.

Question: what does "feeling better" mean? I guess it's different for everyone but 2 weeks ago, I did not have all over body pain. I had headaches and low back neck wasn't bothering me too bad and my legs hurt on and off. Now it has progressed to all over pain (legs are ok just weak). It's a little better than a few days when my whole body felt like it was on fire but my whole back hurts and my head is banging. I do grind my teeth at night and I think it's been worsened by the cymbalta. I spent $1,000 on a night appliance about a year ago that only made my symptoms worse. I clenched so hard on the bite plate that my facial muscles were so sore every morning. I know it's stress but I don't know how to relax. I worry about everything-im constantly thinking about my pain, is it going to get worse, will I be able to work again and move out of my parent's house, etc. Worrying just makes it all worse. Positive thinking has never been my strong suite but it would probably benefit me more than all of these negative thoughts swirling around in my head.

It is very exhausting trying to get people to understand fibro and how I need to pace myself, etc. I missed thanksgiving at my sisters because my back hurt so bad I could hardly walk. My parents came home and told me how disappointed everyone was that I wasn't there and then another fight started: me trying to explain how I feel like I have the friggin' flu everyday and my mom saying that I am socially avoiding people because I am depressed. Then my dad said something like, "maybe you should start thinking about filing for disability." Heck NO-i WANT to work again! Please don't get me wrong, sometimes it's necessary to be on disability and I have nothing against it but I want to try and get better before I go down that road.

I'm sorry this post is so long, it helps to get all of this off of my chest because I don't really have anyone who truly understands to talk to.

Fantod- I plan to make an appt. with a pain psychologist at the pain clinic that I go to. I think that it will be helpful to talk to someone about all of my problems. Thanks for the suggestion and for the supplement recommendations. You said phosphatidylserine helps with memory? Maybe ill try to get myself some.

I have an appt with a rheumy next week. I am going to ask him about savella. Should I ask him about pain meds as well? I know that they are addicting but sometimes a person needs them. I read somewhere that pain meds sometimes don't work for fibro you guys find that to be true?

So yes I plan to start a water therapy class for people who have arthritis. I talked to the instructor and she said that ill be the youngest person in the class-wonderful. Ha-im 30! It makes me sad because I almost feel like my body changed so fast. I was so used to being athletic, walking 3 miles a day, running and then one day I woke up and struggled to walk up and down the stairs. Very scary.

It's just hard to know if my fibro is progressing or if this is a flare-up. I guess only time will tell. I know that I may never run again but I'd like to think that ill be able to live some sort of normal life where fibro doesn't run my life.

When you guys have good days what are they like? Is there ALWAYS pain?

Thanks for your help. I'm so grateful that I am not alone and that there are people out there who understand.



pam80 - November 26

I had trouble sleeping last night because of pain. My entire back hurts-especially my lower back. I have knots in my lower back that I can't seem to get rid of-gosh they hurt. I'm back in bed now laying on a heating pad and have ice on my head due to my constant headache. I'm also experiencing a burning sensation "down there" and abdominal cramping. It also hurts when I pee. I had this problem last week and it went away but now it's back. My dr tested my urine and I have no infection-what could it be?

My mom said she is depressed because she is sick of me laying around. She said that I need a distraction and to quit thinking about my pain. I can't help it-whenever there is something wrong with me, I tend to focus on it. She insists that I start thinking positive because she can't stand to be around someone who is so negative. Thanks mom! I told her that I don't want this illness and that my symptoms are real. We end up fighting and then I get more upset. Damn- I wish I had some pain meds-this would be a lot easier. Too bad you can't order them off the net!


kvc33 - November 26

Hi Pam, I also having the burning on urination sometimes. Drink lots so that your urine isn't so strong and you should find that that helps. Also you can make your own baking soda capsules to alkalize your urine for some relief. Hot baths and any sexual activity sets it off for me. It's also worse at PMS time. I highly suggest that you file for disability benefits and start paying room and board if you aren't already. Then I would put my name on a list for subsidized housing if I were you. Your Mom's expectations are going to cause you stress and make things worse for you. I have to live alone because I can't handle noise and I also can't handle being around normal people for too long. It's fine to dream of a better life but for now you have to deal with what is.


pam80 - November 26

Kvc33- thanks for the input. My mom is driving me mad but I feel like if I get on disability I would be giving up. I want to get better. Is that possible? I'm a wreck


kvc33 - November 27

I can tell that you are a wreck Pam and my heart aches for you. Going on disability is not giving up, in fact it is taking charge of your situation and a positive step in my view. You need to have your own income because it is empowering. It has nothing to do with the course that your illness will take. I can tell you right now that I could not handle living in the situation you are in now. Having someone criticize you for being ill is the last thing you need. You can get better and no one knows what the future holds for you. I just know that one's environment plays a key role
in their recovery. I only associate with people who are either disabled-friendly or disabled themselves. I do however, understand that 'normal' people are affected greatly by a family member's illness and it starts to affect their health as well. Your Mom just wants you to be well and doesn't know how to make that happen so she figures that giving you a kick in the butt might work. I've had that happen to me and it's very painful. The more people accept me, the better I do. If they could only get that we'd all be happier. I'm pulling for you.


pam80 - November 27

kvc33, thanks for the message. I understand where you are coming from. I feel like I can't get better here at my parents house because my mom is always getting upset with me for sleeping too much, not helping around the house enough, etc. Yes, you are right about making those around you sick. My mom says that she is getting heart palpatations and headaches and I can just see that my illness is aging my father because he doesn't know how to help me.

Is it hard to get disability for fibro? I have depression, anxiety, ocd- have been hospitalized for my depression; I could probably get it based on that.
What exactly is subsidized housing? I realize that going on disability isn't giving up, I just never saw my life going down that route.

Do you feel like you've gotten better since you were diagnosed? I find that the bulk of my stress comes from thinking that I have to live my whole life with this pain and then I get upset,cry and my anxiety goes through the roof. I hate stress-it really is taking a toll on me.

Thanks for pulling for me. I appreciate it.




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