I'm Oatboat and I was diagnosed with FM 2 years ago though I'm fairly certain I've been suffering from FM for a little over 10 years now. How on earth could something like this can go for years or in my case a decade w/o getting diagnosed? Well it's a lot less complicated than one might think. When I first started showing symptoms I was in Basic Training and you expect your body to go through some trauma and aches and pains are just a part of it. I had more than a few garden variety aches and pains though, I even had numbness in my toes, but everyone there is trained to ignore all but the most severe issues and to push you through to the next phase of training. I made it to Tech School, and developed more problems ontop of the ones I left BMT with. I even hurt my back pretty bad. Much like BMT, the Dr's at TS are trained to push you through so they perscribed me muscle relaxers and NSAID's and told me after about 4 months of non-improvement, that if I saw them again they would kick me out. Needless to say I shut my mouth until I got to my first DS and then sought help for the most sever of my issues. I did get help for them but as a mechanic in a male dominated field, I was discouraged from missing work, even when it was mandatory physical therapy for my back. I got out of the military when I was preggers with my first child and thankfully we PCS'd back to the states a little over a year after my son was born. I waited until we got to our next duty station before I tried to go back to the Dr. for my ongoing issues. The first symptom that I was see for was my inability to sleep. My PCM told me I had a sleep disorder, but wouldn't schedule me a sleep study to determine what that disorder was and just gave me a bag of sleeping pills to try. After a few months of going back to him and getting the "why won't she go away" look, I got frusterated and stopped going. A couple of years later I tried to go back in for chronic fatigue. I saw a new PCM everytime I went, they ran darn near every test known to man on me, and couldn't figure out what was wrong. I got the "look" many times and once again got frusterated and stopped going. A couple of years afterthat I decided to try again, but this time for the migraines that lasted for days. Again enter mltiple PCM's, tests, medicines that do nothing for me, and a lot of "I don't know what's wrong with you". Which is Dr. speak for "Stop being a whiner and wasting my time". I got divorced before I could really get anywhere with this round of Dr's and then I got laid off from my job. I had to wait until I got a new job (2 in fact) and the insurance kicked in before I could go see another Dr. By then I had started to experience severe pain in my hips, feet, and back, I couldn't sleep, and moving was agony. I went to one of the local PriMed's and one of the tests they did came back positive for Lupus. I had to wiat 6 months before I could get in to see a Rheumatologist and all he did was take five minutes to look over my history chart, poke me in a few places, and tell me I had FM.
Dr. Dick won't treat me though, he just tells me to take Vitamin D or I will get cancer from head to toe and die. I've had to start seeing a psych and she has been trying to help me with my FM pain and all the fun side affects that goes along with it.
I won't lie, I'm in constant pain and this alone frusterates me more often than not. I have 2 beautiful children who know they have to use gentle touches with mommy and a wonderful boyfriend who gets just as frusterated because he tries to help me with soothing massages but the mere act of touching me causes me pain. I try to stay positive, I take walks with my children and elderly dogs daily, regardless of how much I hurt. I plan fun activities with my kids every week to make sure they know just how special they are to me and I make sure my bf knows just how much I appreciate everything he does for me. I've managed to almost completely eliminate the "fibrofog" by increasing my daily intake of B12 and I take the highest dose of Vitamin D you can buy OTC. I'm looking for a replacement for Dr. Dick and my Psych and I are still trying to find the right cocktail to help me in the meantime.
So as you can tell I haven't had the best journey out there, but I do look forward to my "good" days becoming better and I'll take all the advice I can get so lay it on me!
Hi Oatboat and welcome! Thank you for sharing your story. I know many people have had similar experiences regarding getting a diagnosis. There are many different supplements that mght help and the ones you are on may be helpful. There are medications for fibromyalgia if you can find a doctor to treat you with more respect and understanding. Sleeping medications and supplements may also be helpful if you do have trouble sleeping. The problem is that a lot of them have sedating side effects which may impair your ability to work. I take magnesium glycinate at bedtime to help me sleep. I also take ubiquinone which supposedly helps generate energy in our muscles (I think). You just have to find one to give you good advice and dosing and so forth to help guide you. My doctor ran thyroid tests so I am waiting to see an endocrinologist to rule out hormone and thyroid problems. That might be something to consider.
Hope you get more advice, and I am glad you have supportive family, that goes a long way toward helping. gentle hugs
Welcome again, Oatboat! I’m glad you’re here and on the road to getting the correct treatment. Your story is pretty familiar since a lot of fibro patients fins themselves bounced around from doc to doc, but i think maybe being in the military you may have had a worse go of it than others.
Hopefully, you’ll be able to find another rheum since it sounds like the one you have is a bit of a wackadoo. Be careful with supplements, and only use them if you’ve spoken to a doc or pharmacist about adding them. A lot of them are simple nutrients that are available in your average diet, and don’t need to be added. The B12 and Vitamin D seem to be the ones that just about everyone is low on, and have few side effects if they’re taken as directed. They do seem to help, which is another plus. The other supplements can cause a myriad of SEs and some of them are as dangerous as prescription drugs. Just a thought about your vitamin D, maybe you want to get a prescription for 50000 IU a week? It would save you taking it daily and the rx may be better absorbed than the daily OTC version? I found that when I was taking a lot of pills, over time, I started to have difficulty swallowing them. This from a gal who could take 10 tabs all at once!
Thank you for sharing your story and letting us know you a bit better!
Seems like you have had a long and eventful journey. Respect to you, holding down a job and having children too. Can't offer any magic fixes, sorry. There is none for this condition, I think with meds it is trial and error. From what I have noticed on this site, you can have loads but it does not help your condition that much. Just be kind to yourself, sleep or rest if and when you can, pace yourself and devote as much time as you can to your children.
Thank you all. Meow, I do have a sleeping med my Psych (Dr. C) prescribed to me and I usually take that regularly. I actually ran out of it Saturday and haven't had a chance to get to the pharmacy to get it refilled. I've actually been pretty surprised that not only am I managing to fall asleep rather quickly, but I'm also staying asleep through the night. I'm hoping that my daily walks are helping in that department.
Grumpycat,
I try not to take many pills and am not about to start taking new ones w/o talking to my regular Dr. (not Dr. Dick) first. I do have a known Vitamin B & D deficiency so I do take those regularly. I have to take the OTC Vitamin D daily because I can't remember to take the large dose once a week and since I have to take the B12 and my birth control every day it's just easier to take the Vitamin D at the same time. Mainly what I'm interested in is finding out if there are certain foods that seem to make it better/worse. Since I work full time in an office I'm also curious to know if anyone has tried out ergonomic keyboards/chairs and if those helped alleviate or at least mitigate stress on the body.
I am looking for a different rheumatologist at the moment. There are only 2 in our area and they both work out of the same office. I thought that maybe I was the only one having a problem with Dr. Dick, but everyone I've met that has him for a Dr. all say the same thing. He is a horrible Dr. and they are looking for a new one. I think the closet one outside of Dr. Dick's office is an hour and a half away. I'm not really looking forward to making that drive but it might just be necessary.
Hi Oatboat and Welcome! I am sorry you have had a long journey to the diagnosis, unfortunately that is all too common. I am having my general MD manage my Fibro, there are general MD's out there that will do that. That might be an option for you to look into. Regarding the ergonomic keyboard, I too work full time with a good amount of typing. I haven't tried that specifically but I did re-arrange things so my feet / legs are able to stretch out fully under the desk or workstation and if possible, I elevate them for a few minutes frequently thru the day. I also put the keyboard on my lap sometimes as that helps my wrist angle. Anyway, just a couple of the things I've found that help me. Again, welcome to the community! Hugs!!!!
Hi and Welcome Oatboat. Love the name!!!!! Yup, your story sounds amazingly familiar, with the difficulties in getting a diagnosis. My GP also manages my Fibro. She has been stellar in listening to me and trying different drugs and lifestyles changes. I also suffer from severe osteoarthritis most noticed in my hands, and have to manage that pain as well. I use many special tools designed for people who have compromised mobility with hands. I have specially designed pens to reduce stress on my thumb joints, I use a stand for my lap top at work so my head is held higher to reduce strain on my shoulders and neck. I am going to buy a ergonomic key board for work this weekend as well. I make sure at work that I go for a walk ( 1 minute) down the hall at least once ever 30 minutes to stretch my legs and back or I get so stiff I find it hard to walk. I often close my door at lunch and have a 20 minute nap. I am sure there are many more suggestions out there. Explore the site and I hope you can find some ways to help manage your symptoms. I am glad you found us. This is an awesome place for support and ideas. Hugs, ST
Hugs and thanks for serving. Military doctors are not the best and I can tell you I had my fill of them. Stay strong for you, your bf and kids. We are here to help.
I had a beautiful reply, and the internet gremlins stole it! I will try to recreate it.
First, I’m glad that you are already aware to be careful,with supplements, and apologize if I offended you… When I was diagnosed, I got sucked into the supplement black hole which ended up costing me a lot of money, time, and hope. So I’m glad that you don’t have that problem and are already well-informed.
For work, I also investigated the ergonomic keyboards. What I found was the really nice keywords were incredibly expensive. My work was not willing to help me with the cost of these so it was an expense that I would have to carry on my own. I decided to look into dictation software and read the reviews and found that DragonDictate has really good software. Amazon had a really good deal on an older version. The version is 11.5 and it has better reviews than even some of the more recent versions. If you’re interested, I’ll send you the links. With my work I have to do a lot of documentation, it has to be accurate, and anything that I use needs to be user-friendly. I found Dragon to be a pretty good program for the price. Initially I paid nearly $70 for the software, but the same software is now available for $35. Either way it was well the cost.
I also looked at chairs, and again found that cost was a problem. I did find a really nice chair that was being discontinued and was on clearance and ended up buying that. But when I found that really helped me was getting up every hour and doing some light stretching or yoga. I found some easy routines for 5 to 10 mins. Those have been incredibly helpful to combat stiffness and pain throughout the day.
My rheum is 1.5 hrs away. It is well worth the commute to find a really good doctor who provides good care. What I did was asked the people on the board Who their doctors were and if they liked them and was able to find a doctor near me. It’s worked out pretty well and I’m really glad that I was able to find someone that had a personal referral from someone I trusted. I hope you find someone soon; it makes all the difference in the world to have a good doctor.
Take good care of you; talk to you later, GrumpyCat.
Oatboat38 said:
Thank you all. Meow, I do have a sleeping med my Psych (Dr. C) prescribed to me and I usually take that regularly. I actually ran out of it Saturday and haven’t had a chance to get to the pharmacy to get it refilled. I’ve actually been pretty surprised that not only am I managing to fall asleep rather quickly, but I’m also staying asleep through the night. I’m hoping that my daily walks are helping in that department.
Grumpycat,
I try not to take many pills and am not about to start taking new ones w/o talking to my regular Dr. (not Dr. Dick) first. I do have a known Vitamin B & D deficiency so I do take those regularly. I have to take the OTC Vitamin D daily because I can’t remember to take the large dose once a week and since I have to take the B12 and my birth control every day it’s just easier to take the Vitamin D at the same time. Mainly what I’m interested in is finding out if there are certain foods that seem to make it better/worse. Since I work full time in an office I’m also curious to know if anyone has tried out ergonomic keyboards/chairs and if those helped alleviate or at least mitigate stress on the body.
I am looking for a different rheumatologist at the moment. There are only 2 in our area and they both work out of the same office. I thought that maybe I was the only one having a problem with Dr. Dick, but everyone I’ve met that has him for a Dr. all say the same thing. He is a horrible Dr. and they are looking for a new one. I think the closet one outside of Dr. Dick’s office is an hour and a half away. I’m not really looking forward to making that drive but it might just be necessary.