I was thinking of going gluten free. I tried not long ago but I hate the texture. Have any of you noticed Restless Leg Syndrome set in. Mine started a few years ago. My doctor had to.put me on requip to stop it.
I have bad muscle spasms in my legs, calves especially, often visible, but no past rheum nor I consider them RL.
Here’s something that may give you all a laugh. I just saw a new rheum, first visit he suggested gabapentin, tried, had weird heavy leg side effect, stopped. Second visit, I had really bad leg pain and spasms. He discussed how FM is a complex and puzzling disorder that frustrates and depresses different specialties so they try to get rid of patients and boot them to others. He prescribed Tramadol and a muscle relaxant, gave a “final appt.” for three months out ie. he booted me LOL!! When I asked if he’d prescribe LDN he suggested a pain specialist might but didn’t know any!
Hi Elizabeth! Out of breath as we speak. I've had Fibro for several years now. Couple of years ago, I noticed I was holding my breath most of the time. I still do, but I try to be more conscious of it. I stop and take some deep breaths. It's worse when I up moving trying to get some things done around the house. I can only exert so much energy, if I go beyond that I find myself holding my breath, due to the pain.
I can't blame it on my medicine. I only take Methocarbamol, a muscle relaxant at night. I stick mostly with supplements, because I've had too many reactions to meds.
It would be interesting to hear what your doctor has to say...
Hi Elizabeth, This happens to me too. But, please seek medical attention for the shortness of breath in order to rule out any life threatening issues unrelated to the fibro. Good luck.
Haha, Cape that sounds all too familiar! What I loved most was when my pain mgmt doctor shrugged when I asked him if there was anything else or any new advances in FM studies. What I love the most is being treated as a “seeker” when I wind up in the ER with a Migraine I cant kick. As a heathcare professional I know all to well how they think of you when you come in with a “supposed” migraine. I had one if my own ER doctors, at the hospital I worked at sit there and tell me that he wasn’t going to give me drugs. I told him I just had migraine and my regular meds. were not working. He thought I was coming in for a “fix”! Needless to say I quit that job. But now that the ER’s, doctors have access to ALL of your pharmacy records and in my case, when i was taking the Norco and Fioricet and I would get a migraine that would not subside with my usual meds, if I go i to the ER saying I have FM and I have a migraine, they usually want to give me toridol (which doesn’t work) and send me on my way. Its kike the minute they hear the word " Fibromyalgia) a big red light goes off in their head and they want to make me someone elses problem! You are ommediately seen as a drug seeker. I have never felt more like a criminal in my life than I have since being diagnosed with FM. Thats part of the reason I stopped taking the pain meds. I cant stand the judgement. I’ll be the first to say that before I got diagnosed I was every bit as judgmental as the others. Than I started showing symptoms and here I am 6 yrs later no better n more depressed. The feelings of hopelessness can be overwhelming sometimes. I think they should issue membership cards like they do for legal marijuana. Anyone can claim they have FM because you cant show or prove symptoms, but if you had a card from your GP stating that you have legitimately been diagnosed with FM maybe you wouldn’t be treated like a junkie as much. Maybe you might be shown a little compassion instead of being pigeon holed into a specific group. Not sure if you can tell but Im just wee bit angry about the lack of research being done, or a lack of treatment options. Why aren’t there 5k walks being done to raise money for research? It may not be life threatening, but theres days when I just don’t want to go on anymore. I dont want a lifetime of pills and pain.
I just got a medical MJ card with " patient" in big red letters LOL. Too bad MA is full of incompetent and corrupt legislators that are taking months to certify dispensaries to open. I just started a bunch of different supplements also.
Thanks to Elizabeth for posting this problem as I have it also but did not put it together that I’ve been been holding my breath due to pain avoidance. I will consciously try to deep breathe.
As for research and publicity, Morgan Freeman is the highest profile guy with FM but refuses to be poster boy. It would make more of a difference than any of his movies.
April,
I get help with Lyrica... see if they can help u with your co pay.. are u from U.S.?
Karen
April Shill said:
I was on Gabapentin when I was first diagnosed back in "09. It triggered all kinds of nasty side effects. Gabapentin is mostly used is patients with seizure disorders. I have been on a litany of meds from the gabapentin, celexa, some other that I cant remember and now I'm o. Lyrica. Its expensive as hell and I'm not even sure if its working. Im upping my dose every month and paying over $200 a month for a med that I have yet to see results from, but its one of those titratoon meds so we will see what happens when I reach a "therapeutic dose". But even my doctor shrugs his shoulders and says "well lets try this, and I'll see you in 6 weeks". Ugh, its frustrating and between my $60 co pay and my $200 Lyrica and my $60 fioricet for pain, I'm loosing money because of this damned condition, seeing my doctors and prying that this med or that might work!! Anyway, Elizabeth, sorry for my lil rant. When I talk about too much meds, I'm speaking of pain meds/narcotics. When I was first diagnosed I was put on norco. I get narley migraines. One day I took an extra dose because I felt like my head was going to spit in two. As a Respiratory Therapist I noticed that my breathing slowed and I felt like I was "working" to inhale and exhale for no other reason than to simply lay there and breath. I had repressed my respiratory drive. I was actually gasping at one point till I fully woke up and and focused on my breathing. Pain meds are a scary thing. I actually stopped taking anything for pain except the Lyrica as mu sister just died in November of a prescription drug OD. Be careful of how and what you are taking!
I know Cape! If I knew how to put a foundation together to fund research I absolutely would. Its just not as popular or trendy as “run For the cure”. Etc. The sad thing is, none of us have the energy to do it!!! Hows that for irony? I feel like this damn condition is sapping the life out of me! Since I have been diagnosed, everything that can go wrong has gone wrong! I have had a total hysterectomy n bilat oopherectomy. Basically I’m 36 n in menopause. I have had blood clots in both lungs n both legs. If u get a clot in your right lung, you dodged a bullet as it has to pass through your heart to get there. That in itself could have killed me. I feel like my body is turning against me! No e of this happened to me till the FM came up! Ughh what the hell do we do? I cant go on medical MJ because I’m a medical professional n its to controversial, but they are happy to pile on the prescription narcotics!! All I’m doing is managing the pain!
As I’m reading all your post my one thought is that western medicine will never solve this for any of us. I have tried all the meds but have side effects and I refuse to become a drug addicted.
I really think lifestyle, diet, stress changes will do more. These things are hard to change.
As far as the texture of gluten free , yes it’s bad, the store bought breads, but I’m lucky to have a friend that bakes and uses almond flour. So moist are her dark cake and zuchinni muffins .
I also think that there are so many toxic things in our world , I try to avoid as much as possible.
Anyway, good luck to all of us to find what works for us.
Cynthia
Hey Cynthia, your right about lifestyle change. I have a “home bakery” thing going on from home (Respiratory Therapy is becoming too physically demanding) and I am trying some new gluten-free recipes. I have a few great ones that my brother in law loves, but I still cant stand the texture. A lot of them are also with almond flour. Maybe if I eat it enough I will get used to it. As for western medicine, I agree to an extent. I don’t think pain meds are the way to go. Lifestyle change and exercise is absolutely necessary, but if there is something out there that wont make me feel like I got sucker punched every time someone bumps into me the wrong way, than I wanna give it a shot. There may be side effects but I can’t live my whole life like this!
I know what you mean, I also have arthritis, a back condition and over weight. So I want to move and exercise but sometimes I’m in so much pain. Then I think what the heck, just take the damm pills ! Lol !
Then I get them and don’t take them. I think I will just add some turmeric to my green drink , that will do it.
I will share some of the gluten free recipes soon. I have to get them from my friend . I’m going to be hosting some cooking meet up soon just to share knowledge. I was looking at the groups to see the right forum to discuss type of thing. I saw that there is one called a healthier you and was surprised to see only two members. I have my own business, I don’t think I could work for anyone since I never know when I’m going to have a real bad day.
I can relate to the “bad days”! When i sake up with a migraine, I know its likely going to be with me all day. So I dont work on staff anywhere. I work strictly through an agency at hospitals that need staff. It allows me to make my own schedule, if I’m having a bad day, no big deal, I call in. I have no commitment to feel guilty about. The down side, my shifts aren’t guaranteed, but it allows me to work on getting my business together! But this condition robs me of being able to go on staff anywhere and I have had to make changes to my life that were inconceivable 5 yrs ago. I was on the go, active, non stop. Now I’m lucky if I can clean my house. I have to down an energy drink to do the damn laundry!!
I don’t necessarily do it just getting into bed but when getting out of bed to shower and then I almost pass out or with minor activity and I’m young and should be healthy at 35 but I get chest pain and really short of breath. I already have tachycardia, a rapid heart rate, from some of my meds so that doesn’t help it any. Can’t wait to read all of your responses.
April Shill said:
I know Cape! If I knew how to put a foundation together to fund research I absolutely would. Its just not as popular or trendy as "run For the cure". Etc. The sad thing is, none of us have the energy to do it!!! Hows that for irony? I feel like this damn condition is sapping the life out of me! Since I have been diagnosed, everything that can go wrong has gone wrong! I have had a total hysterectomy n bilat oopherectomy. Basically I'm 36 n in menopause. I have had blood clots in both lungs n both legs. If u get a clot in your right lung, you dodged a bullet as it has to pass through your heart to get there. That in itself could have killed me. I feel like my body is turning against me! No e of this happened to me till the FM came up! Ughh what the hell do we do? I cant go on medical MJ because I'm a medical professional n its to controversial, but they are happy to pile on the prescription narcotics!! All I'm doing is managing the pain!
April,
I can sympathize and empathize in so many ways. I feel over medicated but if I don’t take something I get really sick especially in the winter and I have horrendous migraines too. I work in healthcare so I’ve always been careful of the stigma related to being on narcotics until I coul take the pain any longer and need something everyday. And unfortunately I have a high pain threshold but meds don’t seem to touch unless they are good and I haven’t found those yet, it’s really frustrating and a bit overwhelming. I also don’t want to push myself into ever using medical MJ because it truly makes it harder for healthcare providers to treat pain when your in the hospital because you don’t respo the same way to anesthesia or pain meds. I’m a difficult case already and when I have to go to the hospital for a migraine they already assume I’m drug seeking so I try to avoid such situations. I would love to exercise but the next day I’m down for the count and the day after that too. I can’t function after heavy activity and every muscle and bone in my body feels like it’s been through the rack. Anyways, I can understand what you mean and some of me thinks if I could just get away from here and do something different life would change but really would it?
Yes, I gained a lot of weight from Cymbalta and decided for me, that the benefits did not justify that side effect and stopped it. There's also the lack of activity because of pain / fatigue.
Cammie said:
Has anyone had weight gain with FM? I've gained 30 and can't loose it
OMG. Angela, that is exactly what I'm going through. I want to exercise but I'm exhausted. My husband has been great through everything but all of this is straining our marriage. He wants me to exercise because he has read that it will make me feel better. Well thats just great! Why the hell didn't I think about that? Oh yeah, you know I did. When I wake up the next day, I feel like I just did a triathlon in an 80 year olds body. I'm lucky if I can get up to take my kids to school the next day. So I started doing laps. Its a great concept but you need a pool. So I go to the 24 hr. Next to my house but the pool lanes are always packed. There's literally a line of people waiting. So we moved into these nice brand new apartments in September that will have a health center and a pool. Problem is, its not completed yet. None of it is. Come November its finally completed but the pool is now too cold to use. Now I have to wait till its a lil warmer to go i the pool. I live in Cali. So I don't have long to wait. I know it sounds like a bunch of excuses but I need to have low impact exercise. So till i can get back in the pool, my husband n I have been walking the Huntington Beach pier n take the dog to the dog park which is nice, but its just enough to keep me moving. Once I get into the pool I can hopefully get the weight off of me and do more exercise like yoga or something which I hear is great but I cant do it yet. My body, cant do it yet. I keep saying I want my life back" , but I just needed to understand that my life was now going to be different from now on! I just wish there was a way for the people who dont have FM to relate.
Elizabeth,
Do you have trouble breathing when you elevate your head on a few pillows?
If it were me I think it would be worth mentioning to your doctor.
Good luck!
I had a doctor tell me a long time ago to take the height and weight charts and throw them away because they do not apply to me due to my disease(s). Unfortunately, Fibro makes it VERY difficult to lose weight, and the weight seems to come on VERY easily. It's messed up, I agree....
Cammie said:
Has anyone had weight gain with FM? I've gained 30 and can't loose it
Absolutely! I am devastated, not only do we have to deal with our pains and fatigue! Now this. I’ve always been patite, then in about 3-4 years i’ve gained 3 sizes. I work full time as a dental/surg. Assistant, so I’m on my feet all day from 5:30 to 7:30. Yes, I also have people telling me, Oh Elena you have exercise to loose waite! Really !? These are people that do not understand what it is we’re going through. By the time I get home (7:30-8:00) all I want to do is crawl to my couch. Usually by this time my pain is so extreme, holding remote control in my hands is too much. I am very upset and really no one to talk to.