Fibromyalgia and osteoarthritis

[1TeiaMarie]

Hi all I'm 33 going to be 34 the 15 of this month and I have fibromyalgia and osteoarthritis in my lower back and feet! Lower back and feet hurt at a 7-8 no matter what and hands,wrists,shoulders,knees,neck ,ankles hurt at a 5-6 no matter what and the pain from all just gets worse through out the day!Dr doesn't give me anything for pain he said if I lose weight that will help. There's more that I can't do than can and have no idea how to loose weight by the week after Christmas! people also tell me fibromyalgia and osteoarthritis doesn't hurt as bad as I'm telling them! Is it just me or does everyone hurt like this?? Most day's I do good to cook super (and before I loved to cook). Can't find the energy or nonpain to clean (I have to do the normal sweep mop wash dishes)- kids help with most all that but when I tell people I'm hurting they just brush it off and say everyone hurt and have to get things done! They just don't understand how much pain I'm in! Any help would be appreciated

[Nightlove]

I'm 44 and the same as u with some extras...lol. On good days your afraid to say you feel better cause then they ask you to do stuff that will make the pain increase or they say it's all in your head. I dream nightly about chopping off my legs, putting my legs in a grinder but these dreams come from the pain. It's all so depressing but know you are not alone. I tell them. You know how bad it hurts when you stub your baby toe on something...imagine that pain all the time but in every toe, your foot, ankle, leg, shall we continue? And the arthritis just provides the bass behind the sceen with it dull but constant ache! Again, u r not alone

[1TeiaMarie in reply to Nightlove]

I tell them how I feel an time I get done the just ask me to do what ever (fundraising,cooking for the church,cleaning the church never normal stuff) and the one asking has a bad back but dr gave pill for her an she goes home and lays around on a heating pad and I can't just lay around I have kids)! Is your pain like a stumped toe? Mine when I wake up I could cry from the pain in my lower back and feet,hands,wrists,elbows,feet, ankles...feels like I been playing tennis and running in my sleep only relief I get is when the pm meds make me sleep or when my husband finally gets tired of me moning in pain an gives me a pain pill (same ones I have had before for slipped disc-just wanted to say that so people won't thank I'm just taking other people's meds -I know what these will do cause I've had them). I'm just at a loss no matter what I say to people or how bad I look they still ask me to do a lot of stuff! Thanks for hearing me out and for your reply

[syltownsend]

So sorry you have all that, 1TelaMarie. I too have fibro and OA. Yes, other people can be very un-helpful when they don't understand or especially when they don't believe you. Just remember that is just their opinion and you don't have to take it on--you know what your experience is, and they don't! I think they do it because they don't want to or know how to deal with someone else's pain. Or they may believe that you just want attention, or to get out of doing things, whatever. It's their problem, not yours. I've been reading an excellent book by Patricia Evans who has really helped to bring the idea of verbal and emotional abuse into our consciousness. It's called Controlling People. She explains that verbal abuse is defining other people in any way, such as telling you what you are/are not feeling, what your motivations are/are not, what you are/are not doing or trying to do, etc, as if they could get inside your head/body and know what your experience is. She goes into why people get to be verbal abusers & why they try to control you. Also some ways to respond to verbal abuse & controlling behavior. I highly recommend it. If you have a Kindle and Prime, you may be able to borrow it for free (as I did), or get it from your library.

Some things that have helped me: Trying to turn my "I can't's" to "How can I...?" Baby steps, especially with exercise. Most people when they think of "exercise," think jogging or working out in a gym, but there's a lot more to exercise than that. Almost anyone who is conscious can do some kind of exercise, and anything you can do helps, gives you a starting point from which to build up to the harder stuff. If you don't know a word of French, you wouldn't start by reading Balzac! What I figure is that if I hurt no matter what, I might as well try exercise, which is very likely to help with both fibro, OA, and also weight loss, in the long run. It has really helped me to work with physical therapists and occupational therapists, who can help me find a starting point, things that will help without overdoing and making things worse. It needs a doctor's prescription in U.S. and probably elsewhere.

I agree with your doctor that pain meds, especially opioids, are not a good long-term solution, but it seems like he really doesn't have much empathy and has been generally unhelpful. He could have given you some help on the weight loss instead of just giving you a deadline, and some short-term medication could help you get started to being more functional, losing weight and exercising. That would sure beat just ordering you to lose weight by the week after Christmas! It sounds like you might be depressed, too--who wouldn't be with all that to deal with? so could have suggested something to help with that, such as medication and/or psychotherapy. Depression is really demotivating and can increase pain and decrease ability to do anything else.

I'm very wary of anyone, doctors included, who think they know what's best for me and want to give orders without giving me any help to do whatever it is that they think I need to do. They may have expertise in certain areas that I don't have, which is why I go to them in the first place. But they're not in my head or body and can't know what it feels like to be me, any more than anyone else can. If they start pulling rank on me and/or seem to lack empathy, I can always vote with my feet!

It has also helped me to remember that I do have a voice and can ask clarifying questions whenever I need to. Even the best, most empathetic professional can't know what I am thinking or feeling if I don't tell them. I may need to ask for help in carrying out their advice. If they can't or won't do that, it might be time to think about getting a new doctor who will.

Other things that have helped me: A combination of Lyrica (pregabalin) and Cymbalta (duloxitene) has really helped with the aches and soreness, and also with some of the joint pain. I don't like to take NSAIDS, even OTC, because of potentially serious side effects, but on the worst days I may take a couple Aleve (naproxyn). Orthopedic surgery, followed AND preceded by PT and/or OT ("prehab" and "rehab") for some of the OA, when needed. Ice and heat, especially ice, or combination of the two. Not giving in to the temptation to just lie around or sit around all day when I feel bad, which will just make things worse in the long run, while still giving myself permission to rest when I need to. Support groups, both in-person and online. Individual psychotherapy, for depression, anxiety & ptsd. I use a topical rub called Biofreeze when it's not possible or convenient to use heat or ice. I like that it just has natural menthol, so side effects are unlikely as long as I follow the directions, but there are many other brands that might help. Reading everything I can get my hands on about whatever is troubling me. Remembering that I don't have to, and can't, do it alone; if those around me are not empathetic or helpful, then I need to find someone who is.

One thing that has really helped me in more ways than I can express is a wonderful weight loss program that uses hypnosis. Yes, I've lost weight, and my general health has greatly improved because it has helped motivate me to eat a more healthful diet, start an exercise program, think more positively about the past, and get excited about my future! And relax more, have less stress, and not let negative people affect me so much.

I hope this helps, and that you can get whatever it is that you need. You don't deserve to be in so much pain or to have people around you verbally abuse you. And you deserve to have the life you want, whatever that is. Good luck, safe hugs.

[1TeiaMarie in reply to syltownsend]

Thank you for the reply. I try and move around but it's hard when you wake up and are in pain like you have been running or playing tennis in your sleep. In on Wellbutrin and soma with Xanax for panic and anxiety! And on a bipolar medication that makes me sleep! It's not just regular stuff people are asking its fundraising, cooking for the church, cleaning the church things that make me stay moving and on my feel and lifting-that's the problem! And the one asking had a bad back herself and knows the pain (but her dr gave her meds for the pain an she goes home and lays on a heating pad-when I can't just go home and lay around) it's hard to turn someone down when I know they need help but when I wake up in pain it's hard to want to help you know what I mean?! I have told people countless times how I hurt an what I can and can't do they just brush it off and ask me to do what ever as soon as I get done talking! I'm at a loss of what to do and how to do it so I don't hurt everyone's feelings (I'm a nice person but once I start telling people what I really think I get really straight forward and kinda mean an I don't want to be that way)! Thanks for hearing me out on all of this!

[syltownsend]

People are going to keep asking you to do things as long as you keep saying yes. Maybe that's why they think you can't be hurting all that much, because you keep on doing what they ask. I've learned that I have to be my own advocate and set my own boundaries, and sometimes, many times, that means saying "no." Maybe a lot, at least until I get better. I have a right to take care of myself and draw the line when I need to. It doesn't mean I'm "not nice," it just means that no one knows like I do what my limits are. I can't expect other people to just figure it out for me and stop asking, if I haven't let them know exactly what I can and can't do, then make it stick. If I don't make it stick by saying no, then I'm expecting them to figure it out and take care of me by not asking.It's very hard at first, being afraid people won't like me and all that, but I find that some people actually respect and even admire me for being able to say no when I need to. There are going to be some people who won't like me or even be mad at me and think bad things about me, but that's their problem, not mine. I don't have to take care of other people's feelings at my own expense. I know what you mean about being basically nice but getting mad and telling people off. My mom was like that; she didn't know how to take care of herself and say no and set boundaries, including with me and my sister unfortunately. She'd just stuff her feelings for a long time and finally really lose it and get verbally abusive, slam doors and say hateful things and scare us half to death. She did learn to be assertive with my grandmother after many years of abuse; Grandma had been mean and abusive to her since she was a child, which I think was a lot of Mom's problem. Anyway I had to learn to say no to my husband and eventually dump him, because I finally realized I didn't deserve to be verbally and emotionally abused, and the more I stood up to him the worse he got. Good riddance. At least I learned from the experience, as well as from watching my mom deal with her mom.

Take care, take it easy, we're here for you.

[Curvycaz]

Hi I have both fibromyalgia n oesteratheritis n I'm wiv u the pain is painful or bloody painful . I also have a prolapsed disc in my lower lumbar so my lower back pain is chronic. I get pain in feet,knees,hip,shoulders n neck also. Most days I can just about function. It's the lack of sleep that does me in Cz that affects my mental health(emotional unstable personality disorder). U need to change ur dr Hun. Gaining weight is generally associated with fibromyalgia n tramadol would take the edge off the pain. I take oxycodone,pregabalin n amitriptyline for my pain. God I dread to think wat my pain would b like wivout that medication. Fight ur corner n demand strong pain relief.. Good luck