For the last two weeks I’ve had a hard time walking and now using a cane to walk during those intense days. I’ve officially been off all fibro medication for about a month. Anyone have bad symptoms come on that fast?
Oh yes. I’ve come off Meds now and it’s pretty harsh isn’t it. Trying not to think about it. Flipping impossible though. Especially when you’re trying to sleep
Yes, and it was the fibro, not my getting off of my meds, in my case. My fibro went from bad to terrible in January after a car accident. So yes, it sure can hit you hard and fast, Crystal. Except in the hottest weather, I can barely walk now since the accident.
Now, my question to you is: could it be a reaction to your getting off all of your fibro meds? I know that if I skip even one dose, my pain ratchets up astronomically for several days. Since some of the fibro meds work on suppressing the pain, you might be getting a faceful of it because the meds are no longer suppressing the pain. Mind you, I'm no doctor so I'm no authority on the matter but that's my perspective on the matter.
And I'm terribly sorry that you're faced with this. I hope that your situation improves.
Hugs,
Petunia Girl
Oh, Jo, I'm sorry! You've got to endure it for another 8 months or so. Yikes. Maybe a punching bag might be in order. :-) Or tons of chocolate. Well, the good news is that at the end of this horrible journey for you, there'll be the cutest little munchkin around who's all yours. :-)
Yes that’s what Simons for - taking a beating and getting my chocolate. Lmao just kidding. You got a good point there Pey! Someone said the pain gets better. Wish I could remember who that was now. No it’s all good. Just my body getting used to it. I’ll be better soon. Any chocolate gifts welcome though…
You’re so right again girl. It’s definitely the both isn’t it. It’s like being newly diagnosed and very under treated.
That’s why we need friends like you.
Hope we all feel better soon!
Sorry to be nosey but What made you come off your Meds by the way Crystal? There must be a very worthwhile reason. That must be what keeps you going strong xx
Before I found my current Rheumatologist, I went to a Neurologist, his suggestion was to come off all meds, swim, do yoga... and his diagnosis of me was that I was 'stiff' this infuriated my Internist and Chiropractor when I later told them. However I tried it, it was summertime, which is usually the best time for arthritics, and I CRASHED!! Even being weaned off, of course you have to realize that I have 3 autoimmune diseases, that were diagnosed right after all of this.
I have resigned myself to the fact that I will always have to take meds, I feel better and do better on meds. And since this is genetic, want to do all I can, just in case my son and grand kids also get this. My grandmother just took Tylenol, Vitamins, and Celebrex. That was what was available to her.
Crystal, is there a reason that you went off all meds? Were they helping you? Have you seen a Rheumatologist?
My mother in law beat it into my husbands head that I was just making everything up and didn’t need any medications. She was dead set on me saying I was sick for attention (she’s the type where no one is worse off then her). Well he went home and flushed every pill I had down the toilet and since the pharmacy wouldn’t refill I was stuck without. What’s worse is he hid the cane I was using (it was a gift from me to him) and refuses to help me get around. But what’s odd is when he takes a break from speaking to his mother he’s supportive and holds me while I cry about the pain.
Anyway, I was on a diet and medication regimen and was working great but now I swear I feel like a cripple I can barely move. I barely eat, I sleep all day and just feels like I’m in a rut I can’t get out of. Some days I feel there’s no hope and want to end it all my suicide or amputation. I know its wrong to think like that but its hard not to feel that way when I’m stuck like this. I’ve called my rheumatologist and they can’t see me for another three weeks. I’m not comfortable with this doctor but its hard to find a doctor that not only treats fibro but also supports you and doesn’t think its “all in your head”.
Thanks for letting me vent and for all the great insight!
Hi Crystal
Have you tried taking the hubby to your appointments? Coming off some meds can cause seizures and other serious problems. Taking a cane could cause you to fall and have serious injuries. He really needs to understand your problems before things get completely out of hand. Also maybe you can come to a truce with the mother in law. It can lead to a long hard marriage if things keep going this way. I will be thinking of you.
?? Jo, if you are asking me about coming off meds, I didn't. I really worded that sentence poorly. My pain intensified after my car accident.
Sorry if you're talking to someone else, Jo!
And YEAH, I hope we do all feel better soon. Today I'm feeling so trapped in my own body, like Humpty Dumpty sitting on his wall, afraid to move in case he falls off and cracks his fragile shell. So true!
No he has never once gone to any doctors appointments with me. He says its a waste of time and he would rather be at work. He is like my mother in law when it comes to others being "more sick" then them. Ive learned to just ignore them. My mother in law wont come to an understanding or truce shes always right and theres no compromise with her. Its been difficult cause he always says im lazy and worthless...but thats just life.
Thanks for listening!
Thank for the prayers! I scheduled a regular appointment today with my PCP and told my husband to meet me there since its a block from his work but he never showed up. It was an appointment I was hoping he would have gone to. My PCP wants me checked for Crohns and wants an ultrasound done on my thyroid as they are swollen and rock hard as it may need to be biopsied and removed.. She gave me some recommendations for staying off the medications and going herbal and going on a stricter diet. When I came home and told my husband what the doctor told me he just ignored me and said it was my problem and he didn't want to hear about it. (Such a caring husband huh?) So now Im doing all this alone. I feel like im a burden to my family and that they are tired of hearing about my health drama. Ive told my aunt about the results today and she suggests I talk to my family so they can pray over me. But with my nephews party Sun I dont want to take the attention away from him and cause even more family tension.
I am a mess but I know i cant give up.
Thanks for letting me vent!
LOL, well at least now you have a legit reason to demand your chocolate! I find it puts me in a better mood so hopefully it will do the same for you...and maybe help out a bit with the pain? Can you take NSAIDS? I'm not supposed to take it but i do find that Advil helps a lot with my fibro pain. But I don't know if you're even allowed to take it while pregnant.
Think positive thoughts, like how much your baby will love chocolate through osmosis!
Hugs to you, little mama!
Petunia
OMG! I only started reading this thread because someone said there was an excuse for eating Chocolate with FMS. By the time I made it to the last post by Crystal Martinez I find myself shaking in my chair because I am so angry at your Husband and especially your "Horrid Mother In-law". If my wife flushed my medications down the toilet, one phone call to my PCP and she would have Protective Services here within the hour!. My Doctor had to get into my wife's face and yell at her before she understood just how much I have gone through over the past 15 years. She was never interested in joining my doctor visits. But I never ever missed one single visit to her doctors when she was pregnant. Tow more kids and 18 years later, and her doctor still asks about me every time she has a visit.
Your in my thoughts and prayers... So are your Husband and Mother in Law but for other reasons... like seeing the light before they kill you. I am so sorry that you are going through this, especially with a baby on the way!!! Remember, there are Adult Protective Services.. and flushing medication in my case can be grounds for attempted murder. Stopping cold turkey like that with many meds can kill people.
*hugs*
-Bill Sr.
Hi Crystal. I was experiencing tremendous side effects from my meds and didn't know which one was causing what. I started,slowly titrating off of a few of them. I had already stopped vicodin except for the 1/2 pill I took the last time. It made me very sick with heart palpatations. After that I slowly went off of venlafaxine and discovered it was actually causing my terrible neck and mid back pain. Then I started on the Lyrica. I'm down from 300mg a day to 100, soon to be 50. I've been waiting for house guests to leave before taking it down.
I feel like a different person. I knew the "high" I was feeling before was way more than fibro fog. It's nice to have my brain back. I have altered my lifestyle and I have a super supportive husband. I still take a small dose of celexa. I take clonazepam as needed, usually 1/2 to 1 1/2 mg a day.
I discovered that anxiety is my main source of pain. I try to go for walks, eat right, etc. I love what acupuncture and gentle massage do for me.
I have only got osteoarthritis. No other structural diseases I do have the IBD and IC, and the tender points, but I can live with these by just taking care of myself. When I don't I know it and I use the rescue drugs.
Best of luck to you Crystal. It's not easy balancing what is best for you. It's easy to become persuaded one way or another by someone else, but you have to follow yourself, and make your own way. Even my doctor was a bad match and tried to get me on more meds instead of less. When I went to the pharmacy to pick up the last thing he prescribed for me and the pharmacist said NO, this is BAD to take with all of these other things, I knew I was on my own.
I haven't had any bad symptoms come on suddenly except for bad anxiety and restless leg syndrome. We areall different.
Kitty