So early in December after my fibro kept getting worse and worse , hubby, doc and I made the decision to come off of my fibro med since it had been so long since I had been without med that I didn’t even know if they were helping. Plus the gabapentin made me gain weight and the savella made me tachycardia which I had to then take another meh for and it cost a lot too. So anyhoo I slowly stopped taking them and came to the conclusion that they were helping some. It now sucks way worse. I have a hard time doing anything, including sleeping. I’m sure the weather is not helping, it’s been super cold and we keep getting snow storms. I went back to the doc and she now bang me to go see a rheumatologist and I have a massage scheduled for tuesday, I hope it helps. So that’s my update.
Rebecca
Ps awhile ago the was a link to se the severity of you fibro but I cannot find it. I would appreciate if someone could help me with that.
I applaud you for being brave enough to start from scratch. You did it knowing you were probably going to hurt again or worse. But you had enough common sense ( and ability) to say…I need to try something different. I hope you have a good doctor who has the patience to walk you through other treatments until you find something that will work for you. I wish you well and hope you find the right treatment to help you!
Hello Rebecca
I couldnt find the link but i will keep looking. Massage has helped me alot and i hope to go back when the weather clears up some.
Dear friend,
Many of us have come to the sae conclusion. If I forget my meds for a day, 'I'm in terrible shape so I give you a LOT of credit for actually getting off your meds. But now I'm going to ask: are you going back on them or will you stay off and take your chances?
Seeing a rheumatologist is a good idea, as he or she can tell you iff you have any auto-immune illnesses.
I hope the massage helps. I had them from a sports massage person and they were GREAT for me. But they didn't last long - could be because of my physical job. I hope yours is as wonderful as mine was. I wish I could still afford them.
I’m not sure what my plan is about the meds but I would like my heart to be normal and would like to loose weight not gain it. Unfortunately the place I would like to go for a massage is way to costly. There is a nice lady though I’ve been to before but I’m not sure how well it will work. The first time I got a whole body massage and then fell down the stairs the next day so I don’t know if it helped and the second time I just got a chair massage and suffered for it so I’m just trying to be hopefull this one will help
Ooh, those are nasty after-effects! I hope it goes better for you the next time. And you could try a massage school for an inexpensive massage. Only problem is that you have fibro, so we don't konw how that will react to the massage.
I hope you can get your heart issue straightened out so you get medicine that helps it, not hurts it.That seems like an important thing to deal with, I would think. Does your doctor have any recommendations?
I sooooo hear you about not wanting to gain weight from the pills. I've gained about 40 lbs after going on them, which is horrifying. It's hard to not pack on weight while taking them since exercising is very difficult and the pills make you so hungry! So I completely understand your desire to stay away from that. I just don't know if there's another way to go that will help but I hope there is and you can find it.
Gentle and tired hugs,
Petunia
I received Bowen massage which is a type of massage that specifically helps with individuals who have chronic pain. It is expensive as the sessions are longer than normal but sooooo worth it. You may want to give this a shot if there is someone in your area that practices. I just googled Bowen massage in my area and found a wonderful woman the first time. I cannot afford it at the moment but once I can I am going back. I felt better physically and mentally and had more energy. Warm water swimming I did a lot in the summer which helped as well. I went off my meds this summer because I was feeling great and the combo of those two items helped the pain I had. Now that it is winter I unfortunately started feeling horrible and had to go back on meds. I cannot wait for summer and am hoping to feel that great again. Hope you find what works for you and feel less pain.
Desiree
http://neuro.memorialhermann.org/uploadedFiles/_Library_Files/MNII/NewFibroCriteriaSurvey.pdf
I have used this one. I’m not sure if this is what you’re looking for.
Hi rebecca....my name is robyin and i will share w u my story on meds and maybe it will help. I am allergic to almost all fibro meds. So i control my fibro very well w vitamin D3 (5,000iu per day). Vitamin d deficency will cause u more pain! Especially if ur in a cold state like me! Also i take vitamin b complex, flax seed oil and glucosamine/chondroitin. Only synthetic meds i can to,erate are tramadol and flexeril at night...but most of all my doctore has just started me w med marijuana. I eat it in food form but let me tell u..u can never overdose and i sleep better than ever. Anyways. I struggle every day and gainex a ton of weight. My dr gave me a pill called phentermine. A medical weight loss pill. I lost 120lbs in the last year and also it took all my fibro symptoms away. Yeah it was weird. I lost a ton and now i dknt take it but it did work to get rid of the weight.
Anyways..that was a long story short...if u want to know details on the phentermine just google phentermine and fibromyalgia and u can read a ton of reviews on patients w fibro that was put on phentermine to lose weiht.
Ok so for what ever reason I can’t reply to each of you right now. But I appreciate all you advice and I’m going to do some more research. I do seam to have quite a few intolerances to meds. I called this morning to make an apt with the rheumatologist and they told me my docs office has to make the appt, I called them and was told the doc needed to sign the referral first. I have the feeling I might get the run around. My docs office is really great and this would be a first. I’m surprised since my apt was last Monday, I’ve been avoiding calling. Thanks for everything
Becca