Of course, I'm sure you already know that what works for one person may or may not work for someone else with the same illness/symptoms. So please don't go 100% by what anyone may say works for them. Of course, suggestions and ideas are always good to have.
I was on Lyrica for a couple of years and did find that, at first, it helped with my fibro pain. However, then the dose I was on stopped working and when my doctor increased the dose (to the next level), I began having horrible side effects from it - swelling, (I could very easily gain 5-7 pounds of fluid in a week!) depressions/suicidal thoughts (which I have never had before or since the Lyrica), dizziness, etc. Since the lower dose was no longer helping me, and the next step up of dose was causing such bad side effects, my doctor and I decided to stop the Lyrica. I know of many fibro patients who have tried the Lyrica - some who had some of the same side effects I did (even at lower doses than I was on) and some who have had absolutely nothing but positive results from it.
My situation is a little bit different/complicated, as I also have lupus along with the fibro, so I also have to take into consideration anything i try for the fibro whether it might be contraindicated with the lupus. Such as herbal supplements. Since lupus is an autoimmune disease, any type of supplement is contraindicated because teh immune system is already kind of "hyper active", attacking yoru own body - so when you add "natural supplements" to your body, it can make the lupus worse. So therefore, I've not tried any herbal supplements and cannot comment on their effectiveness..
I have occasionally taken an NSAID (ibuprofen), however, I need to stay away from them as much as possible because of my stomach and also because they tend to increase my blood pressure (a known side effect). When I do take an ibuprofen, it's only 1 and it's definitely not all the time. Again, with me, sometimes it's difficult to know whether my pain is coming from the fibro, from the lupus or I also have severe arthritis - so, when pain control helps, it also can be difficult to know whether whatever I've tried has helped which thing. I do find that when I do break down and take an NSAID, it does sometimes help with the pain, but again, I'm never sure if that pain is from the fibro, lupus or arthritis - so it may or may not work for fibro pain. My personal guess is that it helps the lupus and arthritis pain much more so than fibro pain (mainly because with fibro there really is no inflammation that the NSAID would help reduce)
One main thing that I have found does help my fibro symptoms is I take a sleep aid (Ambien) at night before bed. Sleep disturbances is a major symptom of fibro and if you are having trouble sleeping, it's a viciuos cycle - you aren't sleeping well because you're in pain and you're in more pain becuase you aren't sleeping well. So if you are having trouble sleeping, definitely talk to your doctor about possibly adding something in for that.
Usually one of the "first line of medications" doctors will try for fibro symptoms are anti-depressants in the SSRI family. My doctors did try those on me at first, however, I tend to have bad reactions to all of them - rather than helping my pain, they increase it and they make me super hyper - I lay in bed and stare at the ceiling alll night, make me itchy and super anxious (again, I don't normally have anxiety or dpression issues except as reactions to meds).
I personally use a combination of things to help my fibro and other pain - including medications, heat and/or ice therapy (usually heat works and feels better, but sometimes if my athritis is also giving me trouble, I'll start with ice to help reduce the inflammation and then go to heat to help relax all the muscles), soothing music.
Some people have found some links between their fibro symptoms and certain foods/drinks they are eating/drinking - so you may want to do some experimenting with that. Some of the biggest ones that I've heard about has been with gluten, artificial sweeteners, caffeine, MSG. I've tested myself and have found that gluten does not bother me, caffeine can and does if I have too much, but I can tolerate some (1-2 cups of coffee, but no more) artificial sweeteners do not bother me, MSG has always given me headaches, so I avoid that whneever possible - if I eat Chinese food, I request it to be made without MSG. Chocolate is another one that some people have trouble with. Again with that one, I can tolerate some, but if I have too much (for me), I do end up having more headaches and other pain.
Another type of med you may benefit from is a muscle relaxer. Taking a muscle relaxer, either alone or in conjunction with a pain reliever, can make a good difference in your pain as well as your ability to get some sleep - because, of course, if your muscles are more relaxed, it's going to be easier for you to sleep.
While some exercise is good, going overboard with exercise can actually cause more fibro pain - and you might not feel it immediately, but maybe the next day or even the one after that - the delayed reaction effect I call it. Gentle stretching and water exercises I have found to be the best for me.
I hope I've been able to give you some ideas that you might want to try - but as I said, just remember that what works for me or someone else may or may not work for you. So it's very important to keep a good line of communication open with your doctor so you can work together to find the best therapy or group of therapy options for you.
Best of luck!
Thanks for the info! I heard about Lyrica and the weight gain. I just lost 15 pounds, and I'm not trying to be vain, but I cannot go back. Also, I have had postpartum psychosis before, so I would not want to deal with side effects of suicidal thoughts and depression again. Ibuprofen doesn't help me, now, so, there's that. Muscle Relaxer has helped to dull my pain, which is a huge improvement considering the pain I was in yesterday.
Exercising is going to be a challenge, because I am always in pain. I may have to try water aerobics, but I will see about that.
I am not a caffeine person. Only drink ginger ale. Only drink decaf tea, usually mint or chamomille. (As far as chocolate is concerned, I may have a hot cocoa on occasion or some reese's PB cups) Otherwise, I don't take in caffeine.
I'll see what the doc wants to try. I already take Prozac and Clonozapam, so I don't know what he'll do about the anti-meds. As far as those are concerned, I defer to my psych, as I have been his patient for almost 4 years. I won't let the rheum switch around those meds for fear my depression could come back.
THanks, again! I appreciate your input. It did give me some further knowledge from a personal perspective that books don'r always offer!
You're more than welcome - I'm glad my input was a bit helpful.
I hear what you're saying about the exercise and being in pain - it IS a definite, constant struggle - and I honestly admit I am not teh best about doing it. With teh addition of my arthritis, any type of exercise is very difficult for me (I use a wheelchair to help me get around), but when I am able to do anything, I have found that the water exercises are the easiest for me and give me the least amount of post-exercise he**. If you decide you want to try some water exercixes, you don't have to do aerobics - you can simply "do your own thing" in the water, which is what I do - I don't take an formal classes, mainly becuase I neverknow when i'm going to feel up to going and doing the exercises or not, so I don't want to spend the money on a class and then end up not being able to take it. But anyway - just simple stretching in the water and even walking the width of the pool is great. I have a lot of difficulty walking OUT of water, but of course int he water, you're much more boyant, so it's a lot easier for me. My main problem with the pools is that the water tends to be a good bit cooler than what I would like and sometimes that coldness can make me end up hurting - not because of the exercising, but because of the cold temperature. You may also consider asking your doctor about prescribing water physical therapy for you to try - some physical therapy places have their own little pools that they keep warmer than a "public" pool such as at a Y or community center, so you may find that the temp of that water is more pleasant for you - and as a bonus, if it's prescribed by your doctor and written as physical therapy water therapy, sometimes your insurance will cover at least a portion of the cost.
Definitely keep in close contact with both your rheumy and psych doc to make sure that any meds either one of them are prescribing don't interact with one another. I completely agree with you about not letting yoru rheumy mess with your antidepressant meds - especially if they are working for your depression now. The key to this is definitely going to be communication, communication, communication.
Please do keep in mind, though, that even though I had the side effect of depression with the Lyrica - and otehr that I know have had it - it doesn't necessarily mean that you would too. However, I can understand your hesitance to try it with your past history of depression and the post-partum psychosis. I honestly don't know if that would predispose you to a higher risk of those types of side effects or not, but it probably isn't worth taking the chance.
Try not to get frustrated - it quite often takes a lot of trial and error to find the right med or combination of meds/therapies that will work best for you. just be sure to stay in contact with both of your doctors and keep them apprised as to how you're doing and whether any meds they've put you on are helping or not helping.
I wish you the best of luck and please let me know if I can answer (or try to) any more questions!
I thank you, again!
I do have another "side" question(s). I know you have more than just fibro, so, of course, I can't compare notes entirely..... But, do you have sore throats, chills, coughing attacks? I have those, too, which doesn't go with fibro, it seems. I'm just trying to hurry up and get to the bottom of this, but I know I need to be patient. The rheumy took every blood test, it seems, so I don't appear to have an auto-immune issue. But, I'm just wondering if there is some connection with the coughing, throat problems and chills...... THanks!
yes, I do have sore throats, coughs and chills at times - again, however, like you said also, it could be related to one of my other health issues. I do know other fibro sufferers who get sore throats too, but not the cough or chills. So maybe a couple of things are at play with all of it.
Just as an added bit of info - even though your rheumy did testing and you said it seemed everything came out ok, it is still possible that you may have an auto immune thing going on. It's actually quite common for lupus to be difficult to detect and take several blood tests to detect it. In my case, it took three - I was actually in the hospital at the time with a stomach problem that my doctor said is only seen in either lupus or a particular type of cancer - fortunately all my cancer testing came back negative - and after three different blood tests, my lupus test came back positive. I do also know that, if you do have lupus (or other auto immune), spending time in the sun prior to your test, may make it easier to detect. I'm not exactly sure HOW it works, but something about being in the sun raises certain levels in those with auto immune diseases. It's best to spend taht time right before your test (like 1/2 - 1 hour), but if you could spend time in the sun the day before AND the day of your test, all the better. Keep in mind that spending the time in the sun will NOT raise these markers in people who do not have an auto immune disease, so it's not like you're "forcing" your body to produce them.
When I was first diagnosed with fibro, I got a book called "Fibromyalgia for Dummies" and one passage in there will always stick in my head. It said, to explain how the pain of fibro feels, think about how you feel when you have the worst case of the flu you;'ve ever had - with all the body aches, etc., and then multiply that times 10 - and that's how many fibro patients feel EVERY day ALL day. That is how I feel - and I'm guessing that might be part of why my sore throats go along with it (if the are fibro related and not allergy, lupus or asthma related).
When you get the chills, have you checked your temperature? Do you ever run a low grade fever? If you do run low grade fevers, that could also be another indication of an auto immune thing going on - it's one o fmy symptoms with my lupus - low grade fevers (99-100) that cannot be attributed to anything else such as a sinus infection, cold, flu, etc.
I would also suggest that maybe you check wtih your pharmacist too about your current meds and see if by any chance, any of them can possibly have sore throats, chills, cough as possible side effects. Even if you've been on the same meds for a long time, you can develop side effects at any time - and may medications do have "strange" side effects taht you wouldn't normally think of. For instance, one blood pressure medication I take has a dry, nagging cough as a possible side effect and I thought to myself when my doc prescribed it - well, isn't that interesting - I probably won't know if I cough if it's due to the new med, my asthma, if I'm getting sick, or whatever! LOL
All of this stuff can be so overwhelming and frustrating sometimes - feel freel to let me know anytime if you also just want or need to vent.
You are quite a book of knowledge! I just checked out the Fibro for dummies and remember that part about the chills..... I actually have to turn it in this week. But, it was very interesting. A lot of things I did not know.
My Mother in law has Fibro, Chronic Fatigue Syndrome and Restless Legs Syndrome (plus some other stuff). I haven't tapped into her wealth of knowledge yet, because she thinks a lot of doctors misdiagnose people with Fibro, (she says when they get stumped, they use fibro as a "catch-all" diagnosis) so I haven't told her yet that the doctor is coming to that conclusion. I really don't feel like her trying to diagnose me (long story).... Anyway, I have never checked my temp, but I did know that low grade fevers were common with lupus. (I did some research on lupus at the beginning of all of this).
I don;t know what's going on. I made an appt with my rheumy for tomorrow (Tuesday) morning. I had to. My next appt wasn't until April and I told his nurse the possibility of me making it to April was highly unlikely. (Unless he performs autopsies ;) Anyway, that's just my funny way of dealing with this.....
We shall see what he says. I had stomach issues in December, I mean BAD issues, but an ultrasound came back ok, and then it suddenly went away, so, I don;t know. All these things (migraines, joint pain, bone pain, painful breathing, etc, etc) seem to connect somehow, but only time will tell!
All I know is I feel like a scarecrow. Like my body is being held together with popsicle sticks and sometimes the smallest move is SO SO excruciating. My pain level is at an 8. SUnday, it was 10. I refuse to go to the hospital, because they just keep you there for hours then tell you to follow up with your doc. So, I have to just bear through the pain.
Hopefully the doc will be able to help me a bit more tomorrow. Will let you know. Thanks again for listening and contributing and "being there". It is much appreciated :)