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Who treats your fibro?

Jan 04, 2016 6:51 AM

I'm curious who you guys go to for treatment and what treatment plans you're on.

Jan 04, 2016 7:47 AM

My pain management doc and my rheumy and my neuro

Jan 04, 2016 5:58 PM

No one treats my fibro.
I got help from a naturopath and a dietician when it came to food intolerances, which seems to be something that doctors dont mention as contributing factors.
I started exercising using an elliptical because I wanted to loose weight for a friends wedding and found that it helped emotionally and a little bit with the pain.
I continue to go to physical therapy and massage. My physical therapist does acupuncture which i find very helpful.
Yoga helps me too, but finding time is hard since I work fulltime rotating shift work.
When I eat bad I notice I get worse. I found juicing helps with energy levels but i dont do it as a clense, I do it with eating normally and only once in a while because I dont have a juicer and they are 8 bucks per serving pre-made.
My magic bullet was definitely a good investment, single serve smoothies with protein powder are my breakfast.
My heating pads and tens/ems combo machines are very helpful and I use essential oils as well, peppermint is very effective for temporary relief of pain.
All this was found by experiments on my part.
2 gps told me i was too young to be in pain and i must crave attention
Neurologist told me i was bat shit crazy and creating my own pain
Rheumatologist 1 wouldn't even look at me
Pain management did trigger point injection therapy (freezing injections followed by intense physical manipulation by a physical therapist and it did help in the long run but when the freezing came out i wanted to die) then dismissed me
Naturopath too expensive to see regularly and she wanted to put me on weekly in clinic vitamin infusions (needles and me not cool and i cant get that much time off work)
New gp suggested fibro and he is good in that everything i go in for he will run tests but all he can do is write me prescriptions for physio or the equipment i have decided i need (usually after i have purchased it)
Rheumatologist 2 confirmed fibro, sent me on an info session, self management class and a disabled people exercise class (which i felt bad for attending since i do work out almost every day) then said that she didn't need to see me again.

So in my opinion I'm on my own.

Wishing you luck in your journey!
Sorry this is so long

Jan 04, 2016 6:22 PM

I've been diagnosed by over 6 different doctors that I have fibromyalgia. I've been diagnosed by pc's (3), rheumatologist's (3), and even the doctor who tested my carpal tunnel at a rehab clinic in 2 different states. I don't know where you live, but I suggest finding searching for better doctors. Even my cardiologists agreed and accepted diagnosis. What I am having an issue with is finding what other autoimmune issues I have. They all agree I have others, but can't agree if it's RA or something else.

Jan 04, 2016 7:01 PM

I direct everything through my primary doctor as i like others are being treated for a ton of things. I have complete trust in my primary whereas other doctors and pain clinics have said there is nothing left for me get use to it. This makes medication refills much easier and managing everything easier. If I am not on board with a specialist plan I discuss it with my primary so built in 2nd opinion this way. The specialist and other doctors may get thier nose out of joint and I just tell them my primary sees me all the time she knows me the best I need her to know everything for the benefit of me. Seems to work. I just wish I would have thought of it sooner.

Jan 04, 2016 7:26 PM

Rheumatology and Pain management

Jan 04, 2016 8:01 PM

My neuro, plus my "pain team" at the children's hospital. My dad was actually the one to find an accurate diagnosis, and get my body (kinda) working from DMSO, amidst dozens of other prescription (usually neuro, my primary doc sucks...our at least my last one did. New doc is actually happy that I'm doing better) and non prescription/supplement medications.

Jan 05, 2016 7:09 AM

Thanks everyone for the insight to how you manage your pain and symptoms. I saw my rheumy for a follow up yesterday and he said he would write me for as much physical therapy as I wanted for as long as I need it, which I really appreciated but we have none close to where I live and I just simply can't afford financially nor physically to make an hour trip in and an hour home for therapy. It actually was great, but seemed to be pointless because of the distance being stressful within itself. I told him about my experience with the neurologist being such a smartalic to me. He agrees that he is like many cocky specialists in his field. And since I'm not ready for neck surgery, I really would prefer to forget going to the neurosurgeon too, even for a follow-up because he told me that I was drugged out and that I didn't need all the gabapentin I was taking. When I tried to cut it back just a little bit one night, it threw me into the most awful flare I have been in yet. The physiology office was great, but they want me take all kinds of muscle relaxers that make me feel as though ive been tranqualized. And they push expensive supplements that I just can't afford, although the therapy and message were very beneficial, insurance won't allow me to continue. So, I guess I'm down to seeing my general practitioner and rheumy again. I guess I'm finding that it's going to be much easier to manage by stripping it down to the basics again. I'm like Shamagren I guess. Just seems easier to manage meds and all this way. I live in a very rural area and have to drive an hour either way I turn for any medical needs, which really wears me down quick in itself. I wish very much that we had some sort of water therapy, yoga, physical therapy, or something here. But, since we don't, I guess I have to keep it as simple as possible for now.

Jan 05, 2016 7:33 AM

Do you think you could get your doctor to qualify yourbfor Home PT visits? Just a thought? love Terri

Jan 05, 2016 10:02 AM

I haven't thought of that, Terri. That might be something to cosider, but isn't it more for shut-ins? I know there are times I feel like a shut in. But I might be good and able to do for a few days at a time too. I never know if I'll have hours or days that I'm good.

Jan 05, 2016 10:08 AM

You could try some yoga dvds. And strength training with resistance bands. I have an elliptical, weight bench and yoga mat and roller in my workout room in my basement. I have dvds but lack the motivation to use them which is why i was going to class (which i need to start doing again). A home gym is great if you will use it. Maybe do make the drive for physio once or twice and get an idea of the right stretches and exercises for you and then just do them at home and slowly build from there. Just a suggestion

Jan 05, 2016 10:39 AM

Goodness, if only I could retrieve all the money I've spent over the years on all of those things....unfortunately, I'm one that has to be pushed. Sad isn't it.

Jan 05, 2016 1:08 PM

Good question sleeping beauty.
Diagnosis is most often given by rheumatologists but it doesn't have to because it's not an inflammatory disorder. What they can do is give you pain killers, antidepressants and prescription for physical therapy. That's the conventional treatment. Helpful? you decide.
Here we have a special treatment program in our psychosomatic department. That's because Fibromyalgia is a stress-related disorder. So treatment includes education, stress management, exercise and psychological counseling. All of this is known to work for Fibro. You can read more about it in my articles listed on my profile.
Apart from the conventional stuff you might chose to use some supplements, dietary changes and mind body therapies.
So treatment for Fibro should always be multicomponent and at a specialized center. If you don't have such a center, feel free to ask me. That's where I work.

Jan 05, 2016 8:16 PM

My PCP treats my fibro with gabapentin for the neuropathies, Tramadol when severe, and I use Tylenol Arthritis or Aleve intermittently. I also exercise several days a week, and do gentle stretches most days. The stronger I get, the longer I can walk or stay on my feet in stores (good days only). But I still have bad days where nothing is achieved. My rheumy sy IOC only treats my sjogrens. πŸ˜·πŸ™πŸŒΌ

Jan 06, 2016 12:16 AM

Thanks Dr. Marc. I take 1200 mg of gabapentin daily and on most days it is very helpful, but I still have to take lortab more often than I'd like. The nerve pain is horrible. At times it feels like all my nerves are exposed and no one can touch me. Other times I feel the pain pulsing all through my body. I don't understand where that pain comes from or how it can come on so fast! 3 days ago, I woke up feeling pretty good for me, and my hubs and I decided to go to my moms who lives 1 1/2 hrs from us, we got within a block from her house, stopped to see my brother....within 10 minutes of being there, I was in such pain, tears were running down my face. I turned and looked at my husband and said, "We have to go." He had to help me off the sofa and I started out holding g on to him. By the time we reached the truck, he was holding me and helped me into the truck. When we got home, I literally could not walk. For the next 36 hrs., he had to walk behind me holding me by the waist as I used my rolling walker. He couldn't leave me. My legs were like wet noodles and I continued to have nerve pain all over. My fingers and toes felt like they were being held over a flame. Sorry for the book, but I just really struggle trying to understand it all.

Jan 06, 2016 5:57 AM

Dr.Marc, I also take 1200mg of gabapentin daily. If I don't I can't stand sit or lay down my legs hurt so bad. I start first with shocking like electric pains shooting thru my legs and then the ice pick stabbing pains, and finally it goes to a constant horrible ache. My feet go numb and then feel like there on fire. Bad thing is it makes me very forgetfull, and I get my words all backwards.

Jan 06, 2016 6:44 AM

Madre, I know what you mean about the pain causing you to forget things. I've gotten to the point that I have my husband write things down if I'm not able to, and if I am, I write lists and notes. It amazes me how many times I look at those notes later and realize I would have never remembered. I even have him write where my pain is at that time so I can log it later, or what meds I've taken, ext...
Pain like what we deal with is without a doubt, debilitating in more ways than the physical. Love and prayers to you, Madre.

Jan 06, 2016 11:23 AM

My neuropathy symptoms have reduced in my legs, get & hands since I started the gabapentin. But I only started have neuropathies about 14-16 miss ago. πŸ˜·πŸ™πŸŒΌ

Jan 08, 2016 7:06 PM

I also take 1200 mg gabapentin a day. It calmed the "pain seizure" activity and brought down some pain. I have other issues causing pain and when I am in a bad flare nothing they have given me helps. I was on tramadol but there was concerned over it reacting with my other meds at a higher dose. It wasn't helping anyway. The other pain meds I have been given don't help probably more due to my spinal issues.

Jan 09, 2016 3:19 AM

I see how you're struggling with these pain conditions and physical limitations. It seems it takes a lot of courage and patience to live with it. From my work I know its always about balancing between accepting and trying different treatments, examining cause and effect, step by step on a long journey.
But how do you cope with it and still keep a positive outlook?

Jan 09, 2016 6:16 AM

For me Dr fouradoulas its my faith.. Even though I still struggle with learningy new normal and not being resentful. Trying to get family and friends bto understand what we are going through without thinking we ate crazy or just plain lazy. I have to admit I don't always have the best attitude. I am short and snappy and sometimes just plain angry. But most times I come back to a center of myself where I try and process why I was feeling that way . although I have not found a way to express it to the ones closest to me. Mostly because they r still attending to process the basics of most out conditions.

Jan 09, 2016 11:04 AM

Having fibromyalgia is at best the worst dibilating dis - ease ever. Over the years from being bed ridden to being able to take care of myself again was been a ride from Hell. None of us asked for this stuff to be in pain all the time. To try new drug that don't work or have more side effects to deal with. It's all trail and error. Some docs believe you and some don't. I've found that keeping my self educated on the newest treatments help.
For me a key factor is this my belief in Jesus Christ. Without His help I wouldn't have the peace I do when my body is screaming out in pain and nothing is helping. I've learn to pray and know that He cares for me. I don't walk this painful road ahead without Him knowing it first. For whatever reason I've been picked to be a Fibro Warrior. I trust and love my Father in Heaven to walk me through all this pain. I pray this helps.

Jan 09, 2016 1:31 PM

Amen Warriorwoman15! πŸ˜·πŸŒΌπŸ™

Jan 09, 2016 1:37 PM

Thanks for your insights, guys. So faith seems most important. social support, self education, trial and error treatments help along the way. I hope this community can be of help too. I also believe faith and hope are essential. Even though its such a debilitating disease, do you find any meaning it?

Jan 09, 2016 9:45 PM

I'm having a"fog " block... Do we find meaning in the fibro? My brain is not letting me even come close to understanding that question. Lol, sorry! πŸ˜·πŸŒΌπŸ™

Jan 10, 2016 6:09 AM

I think what he was referring to was along with faith and hope in this community ,with our shared disease / pain issues .. And all the issues that come with living this way...do we find meaning in our lives?
Well, that's how I interpreted it.
My answer is absolutely! My faith is as much of who I am as the skin I have that protects and coversmy human body. I can't remove it.I was born with it. Being able to share with any group of people, comfirms this faith and hope for me. I do find meaning..much love and blessings, Terri

Jan 10, 2016 5:18 PM

Thank you Terri! I felt like "duh" just asking, but I think all the cold meds has made my fog worse. I agree with you on my faith. I never go anywhere without it. I don't check it at the door. My faith is why I've been able to come through everything I have and still have a positive attitude. Life is worth living even if my health changed the way I'm doing it. I still find joy and hope in little moments nearly every day, even on bad days. And the addition of this wonderful community of supporter s, it's the icing on the cake! πŸ˜·πŸŒΌπŸ™

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