This morning I saw a pulmonary doctor referred by my TMJ doc, who also specializes in sleep disorders. He had already looked at my sleep study, went over it with me (explained a lot more than the sleep clinic did) and explained that the insomnia is a secondary condition to the FMS. He thought I was on the right path taking klonopin and Lunesta, but thought I needed an antidepressant to help the central nervous system ( prescribed 100 mg of trazadone). He explained it like this - even though most take antidepressants to help with depression, they also help slow down our central nervous system which is always fighting us, thus interfering with our sleep, giving us pain and foggy brain. He point blank asked me if I thought I was depressed and I said no - but…always a but…I think most doctors see frustration and pain and diagnose it as depression, and I feel I am frustrated and tired and in pain, which again gets interpreted as depression. ( was very proud if myself today - both appts. I didn’t cry!) I was a psychology major so I have issues with this term being loosely thrown around. He wholeheartedly agreed with me, but thought a psychiatrist could replace my pain management doctor (who I’ll gladly replace) and my therapist, meaning less doctor appts. and they can prescribe pain meds as needed. I’m really hoping this “cocktail of drugs” will get me some good sleep!
Second appt. was with a young rheumatologist who replaced the idiot I saw in August. Got the whole body work over and she sat and listened to me- really listened to me. She said that while in med school and during her residency she saw quite a few with FMS, but never one like me! She really went over all the side affects of lyrica ( which I had started to take 2 weeks ago) and explained that while your body adjusts to the med, your pain would probably increases because its affecting the nerves (which is what it’s intended to) and nothing has been trying to control them for years! She was glad that I was introduced by taking only 25 mg morning and night and increasing every week up to 100 mg 2x day and then get reaccessed. With my drug sensitivity, she’s betting I may not have to go higher than 100-150. She too thought a psychiatrist would help, especially if I’m not happy with the pain management doc. And of course - the whole exercise topic came up. 3 times a week of aerobic exercise!!! I told her to try doing that the next time she has the flu - she laughed and said I get your point, but take baby steps. She also doesn’t know his I can work fulltime and suggested trying to decrease hours even more.
So all the apprehension I went through about yet more doctors, I feel better because I wasn’t just given a prescription and told to see them in a month! After driving over 60 miles and trying to get 8 hrs of work done in 1 1/2 hrs - I’m ready for 10 days of no work and some sleep Renewed faith - YES!!!
Sounds good Sandi, sounds like you are making progress with finding 'your Doctors'. I am very hopeful that your pain can be decreased and restful, restorative sleep is in your near future!
Keep us in the loop, girlfriend. Thank you for all you do for so many!
I know I pop in with this all the time but TMJ, especially combines with many of the symptoms of fibromyaliga is one of the main signs I see listed on many of the Ehlers Danlos Syndrome sites. Here is a good Ehlers Danlos link, the lists of symptoms can be so long that I had to look at several sites before I realized I saw myself on all of them. Anyone with kyphosis or scoliosis, these are also major symptoms I see listed for EDS, as is joint hypermobility, dental crowding, a high palate (my finger goes to my second knuckle before my finger rests on the middle of the roof of my mouth) early osteoarthritis, soft smooth skin, and many more symptoms. The symptoms vary in degree, and in which ones present themselves, depending on how the collagen is affected in each person's body. Many doctors don't look for EDS either because they think it's rare. However, something will remain "rare" as long as it goes unrecognized. Here are a couple links. I am so sorry for butting in. Also SK how do I start a topic please? Or can I contact the site owners directly? I received an email from https://www.researchmatch.org/ today and they are interested in partnering with Ben's Friends to help people find research studies relating t their diseases/disorders, especially with EDS, because that's what I asked them about. Their service is free in the interest of helping patients and researchers. I don't want to just ignore the offer but Im not a mod and I dont know what to do. Help please? I can forward the email so someone else can see it. Sorry to butt in Sandi and I am glad you have renewed faith!
Sandi, how fantastic for you that you FINALLY found the right doctor for you! Or, dare I say it, doctors! Such a shame that you had to go so FAR to find them though. But still, it's better to have to travel to see them and get something substantial from them rather than going to someone 10 minutes away and getting absolutely nothing. But it's time. You've been looking for a long time now and it's time that you've found doctors to actually help you manage the fibro.
But, seriously, 3 days a week of aerobic exercise? I would think that would put you into the mother of a fibro attack from which you might never recover. My doc suggested tai chi for fibro, which sounds gentler on us, plus some water exercises. But hey, I've never tried the aerobics, so who am I to say? Although I REALLY liked your response about try doing it when you have the flu.
I'm glad it all worked out so well, Sandi. I really hope the sleep meds work because what a difference a decent night's worth of sleep means to you. I know this cause the CPAP machine helped me a lot, plus nortriptyline. Yes, big difference.
Are you still working full time? If so, you REALLY have my admiration. You must have a will of iron!
"She explained that while your body adjusts to the med, your pain would probably increases because its affecting the nerves (which is what it's intended to) and nothing has been trying to control them for years!" Wow, I'm really glad that you passed this on to us because every time I got my Lyrica, the pain would increase and I'd end up needing a higher dosage sooner or later, until I reached the max level for it. Now I know why! I thought it was somehow my fault, like I took the increases too quickly (did them over weeks or months.) So yes, I found this statement to be very true! Thanks for sharing with us.
Waterwaves- An interesting article…sometimes I hate reading symptom lists because I feel like " oh yeah, have that." I don’t have the hyper mobility, but have always bruised easily and it’s gotten worse, I too can put my finger up my palette to the second knuckle, as well as a small jaw. Had my wisdom teeth out and 6 other teeth before I got my braces on twice - first they tried to widen my jaw with a retainer that I had to widen each night with a paper clip. I was diagnosed with cervical dystonia ( not the twitching kind), scoliosis and back in 2009 I had a breast reduction to help with the neck and back pain ( which it did) and it took 4 months to heal, as the dissolving stitches wouldn’t dissolve and kept opening up fresh wounds. Scarring is awful but I don’t have to wear a bra! Hurrah!!! Lady January I had a 1/2 inch piece if suture work its way out of an abdominal incision from a surgery I had 40 years ago! It was better preserved than I am.
I hate the thought of going to my doctor and saying " do you think I have this?" Feel like a hypochondriac, which most think we are anyways. Seems like a hard diagnosis - DNA, etc. I do appreciate you alerting me to the possibility. That’s what friends are for :). hugs~ Sandi
A piece of suture from 40 years ago? That must have been something to figure out what it was. I didn't mean to scare you or anyone. It just drives me crazy that doctors won't look for things they consider "zebras". One of the ladies on an EDS group said she told her doctor she was a "zebra not a unicorn!" When they finally get the genetic testing for EDS worked out, I will post and let everyone know, just in case anyone wants to check it out. Right now they only have genetic testing for one type. I'm glad you finally found good doctors. It's hard to have to go a ways for the good ones but it's worth it. I hope your pain eases soon.
Sandi, I recently went off my Trazodone, 50mg at bedtime, that I had taken for years. Actually I had been on 100mg until this past fall when my shrink and I decided to try 50mg. I felt good about eliminating another drug from my regiment. Well, it didn’t last long. After about 2 months, I was desperate to get some good sleep so went back on it. I called my shrink and told him I had gone back on it. He is ok with that.
The downside is that it appears to be a culprit in my poor vision returning. I think it may be the Trazodone interacting with the neurontin. When I wasn’t on neurontin, my vision was pretty good. The whole vision problem started 2 years ago when I was on Lyrica for about 6 months. I’m thinking that too may have been the result of an interaction with Trazodone. I went off the Lyrica bacause of my eyesight but also because of weight. Otherwise it was a great drug for me! I felt like I had my life back.
Has anyone out there had similar problems.
Sandi, I wish you much success with your new drs., and your new rx. Sleep tight.
My Rheumatologist is also very concerned that I sleep, like Renie said, "if you cannot sleep, you cannot heal". He realizes that it is not a sleep problem with me, but instead the pain problem, and the tenseness, spasms, physical dysfunction, and anguish that comes with the pain.
You are so right, just because we are dealing with injury and illness, pain, sleeplessness and all of the other things that go with it, does not mean we are mentally ill. I do believe that if we cannot get the proper medial care, and manage to rise above being constantly chastised, that it can lead to it.
Finding the right Dr is not everything, or is it? Seems few things are more important!
I am pretty much working fulltime. I take advantage of using someone to cover me for 3 hours I. The morning on nights that I don’t sleep or the pain is really bad - usually once or twice a week. I’ll be going into my busiest time of year at school starting mid- April and runs till October. I’m already stressing about it. I don’t want to hit that wall and leave them stranded - my principal has been sooooo understanding and he doesn’t see my work falling off. If anything, I’m trying to work ahead so I’m not strapped with all later. I would love to be able to just get up in the morning and go to the pool and work out or take a gentle yoga or tai chi class, rest and do one household job a day - no stress. That is what gets me the most!
Breaking news: taking the “cocktail” of meds last night - I SLEPT from 9:45 - 6:30 without waking up once! I was a log, but I was very stiff and had a headache, which has now gone away. Taking 25 mg of lyrica is really kicking the nerves. But I got sleep and hope this is a continuous pattern! I’m rejoicing today and the sun is shining and I get to spend the day and the next 9 days with him and my granddaughter. Gonna make the most of it!
Sandi, thanks for the good news! I am so very happy that you found some doc's you like. What a huge relief for you and your family. And someone to help mange your med's. That would be great. My GP manages mine, with help from my therapist, but I still don't feel covered somehow. I'll go over them with rheumy in April.
I have a list as long as my arm of med's i've tried and can't take for one reason or another. I haven't looked at the list for awhile but I think trazadone is on it. I need Clonazepam for my anxiety. I don't take it for sleep, and it doesn't make me go to sleep, but...always a but!... I think it helps me sleep soundly once I knock out. So thankful that I sleep. Lyrica has worked really well for me. I had to work slowly up to 150 a.m. and 150 p.m. You might remember me trying to stop using it last week. That was a no-no. Even though I was trying to do it slowly I went off my rocker. My reason was that I thought it was making my fog worse. It wasn't neither were any of my meds. It's just part of my fibro. I'm glad your doc explained the process our nerves go through when we start to take it. Makes a lot of sense. Great explanation of how anti-depressants work too. Wow, I'm so glad you shared with all of us.
Maybe now, since you're sleeping better, work might not be so difficult. Wouldn't that be fabulous?
You deserve a wonderful spring break. What a way to start it! I'm really happy for you.
Hi Sandi ,
this is such great news… HOPE !!
we all need that boost, and seing a Dr. That has info & appears to be able to explain something , just is so re- assuring.
I had a long talk with a psychiatric nurse practioner that explained all the neurotransmitters in our brain and how when they get off balance havoc happens through out our entire body. It’s all so fascinating !! The more I read the more I am understanding why my whole life I never slowed down… Go, go, go, … Until fibro of course.
I’m so glad for you !!!
I did read that the aerobic exercise could help eliminate the phosphates that are being deposited in our joints ( another theory to help explain our pain ).
I’m like you… Ya try and exercise when you have the flu … I love that statement , gotta say, I’m prob going to use it… Lol
Many hugs & blessings
dee
Sure wish I could dance right now! Since starting the lyrica again my pain level hasn’t gone below a 7. After my son and his family left after Easter lunch, I tried taking a hot bath to help my aching muscles. Bad thing was, could hardly bend my knees to go down into the tub and almost had to call my husband to get out! He has even noticed how stiff I am. I see the pain management doc tomorrow afternoon and am going to ask about the increased pain since the lyrica. She’ll probably gloat and say “that’s why I didn’t want to prescribe it” even though she said she was going to. I’m not afraid of her anymore and intend to make her aware of that. I’m just so thankful for the sleep - it’s wonderful! Keep dancing for all of us :). Hugs~Sandi
I wonder if a muscle relaxant is in order. I take baclofen in addition to gabapentin, and the combo really works. I also keep diclofenac as a backup. It's an NSAID that doesn't aggravate the stomach as much as the OTC's - plus I think it's stronger.
Now that you mention it, not only did trazodone leave me a daytime zombie, but my vision was also worse. I am on gabapentin, and have recently realized that you can't take calcium/magnesium or other antacids at the same time. I am now taking the ca/d/mg and prilosec 2 hours separate from the gabapentin. Now I don't seem to need the trazodone at all, and the gabapentin/baclofen seems to be doing the job. I had been very worried about what was going on with my vision, and now it has cleared up.
Thanks for helping resolve a mystery that was going on in my life!
Maybe that’s what is happening! I always took cyclobenzaprine at night, but doc said not to take it with all of the other stuff. Most days I would even have to take a tizanadine because muscles were so tight. Maybe it’s not the lyrica (though pain doc said today that the chances are its the lyrica-especially seeing all the other Fibro meds have a paradoxical effect on me). Going to take either tizanadine or cyclobenzaprine right now. Thanks got the tip! hugs~ Sandi
Renewed faith - YES!!!