So, the doctor put a name on the pain and called it fibro a couple of months ago. Knowing what I know now, I think I’ve had it for awhile but it was manageable. I have always had leg issues when I sleep, extra sensitive back and neck. I don’t sleep well. I have had the brain fog for over a year. I had a lot of stressful things in the last few years but what seemed to make everything full blown was moving in September. I was tested for thyroid. Definately low so started medicine and the joint pain got better for a couple weeks and then was crippling. I had no energy, everyday tasks as laundry would make me sick and I needed at least 12 hours of sleep at night. I’m now on fibro meds and anti inflammatories and I am doing a lot better but we can’t figure out the thyroid meds. If I stop, I have the thyroid symptoms, with them I hurt all over. Have an appt with an endo doctor in september (the earliest I can get in). My doctor said yesterday, do what you want with the thyroid medicine. I don’t know what else to do for you. That was frustrating. I had sinus and toothache. Got my teeth cleaned to help with the tooth pain. Teeth cleaning has never been good, but today I am achy all over. I am so frustrated with feeling bad. Yesterday was a rough day and found this group in desperation. I feel like this consumes me right no and no one around really gets it. I want my old life back!
Totally with you MrsK. I too am new to this whole world, and have just had a bad flare. I, like you, was getting random weird tooth aches and severe ear-aches every few hours for weeks - I don't know how many times I was sure that I had an infection - nope - just Fibro being weird. My thyroid bounces all over the place so they can't figure out what is going on there. While the doctors may not be able to offer much new, here is what is helping me (I am not a doctor, just sharing personal experience):
- Gentle yoga - I found a class for people with Arthritis problems that is perfect for me, as well as a DVD from amazon that I love. 30 minutes, and I actually end up more relaxed and at peace at the end. I try to do it right before bed and it seems to help with the restless leg (body) stuff, the mental problems at bed time, and just sleeping more peacefully.
- Brain fog - I work in an area where the brain must be very active, so I went to journalling daily. I write down everything. What I ate and when (I am horrible about forget that). What the weather was, what I did, what I need to do. This helps me not only keep track of things through the fog, but also look at trends and triggers.
Being here is also a great help! This is a great group, even if you just read through stuff. I have been working hard on I *can* statements - so as not to focus on what was, and try to focus on what will be. It is hard, and I cry at least 2 hours a day, but every day I feel a little closer to acceptance. I *can* take my daughter the park, even though the dishes may not get done. I *can* crochet on her blanket, even though rough-housing with her isn't going to happen today. I *can* take control of this, and make incremental improvements to the situation.
Here if you need a chat.
Welcome to the support group, I am so sorry you have to go through all of this, but I can definitely say with certainty that you are not alone.
I relate to a lot of what your saying, my rheumatologist told me one of my last visits that I had to pick one of the options he was offering (I have tried almost medication under the sun, nothing to any avail), and that he was “running out of options.” I was angry over that comment for a long long time. But it really does help to have other fibro fighters in your corner that truly understand what your going through and offer you encouragement. Prayers that your pain will let up very soon.
Welcome. I'm also new to this forum and to fibro and would love my old life back. I sit and wonder at times how I worked 7 days a week with 8-12 hr shifts most of the time. I lost my job about 3 yrs ago due to the fact that after 16 yrs of service I was going to be made a temp. Wishing the best for you and praying.
HI HAVE YOU STARTED TAKING THYROID MEDICINE IVE TAKEN IT FOR 3 YEARS 1 MONTH I CANT REMEMBER HOW LONG AFTER YOU START TSKING IT TO BE RETESTED BUT IF THE DOSAGR IS CHSNGED IY HAS TO BE RETESTED AFTER 1 MONTH AND THEN THE DOSAGE CHSNGED AND RETESTED AFTER 1 MONTH AFTER ITS STABLE IT HAS TO BE TESTED 2 TIMES A YEAR SPRING AND WINTER MINE WAS JUST RETESTED FOR SPRING WITHIN NORMAL RANGE. 03-3.0 I STARTED AT 50MGS NOW ITS 125 MGS GOOD LUCK ITS HARD TO HAVE MORE THAN 1 MEDICAL CONDITION I HAVE FIBROMYALGIA HYPOTHYROID SCOLIOSIS CURVATURE OF THE SPINE AND MARFAN HSBITUS ITS A CONNECTIVE TISSUE BUT ITS DOESNT AFFECT MY EYES OR HEART THE AORTKC VALVE I HAVE MINE CHECKED BY A ECHOCARDIOGRAM OR AN ECHO ILL HSVE TO HAVE ANOTHER ITS BEEN 3 YEARS ILL HAVE TO A CARDIOLOGIST AND ASK THIS YEAR YOURE IN MY THOUGHTS AND PRAYERS
Hi MrsK,
I know a bit about thyroid issues being I was a physician assistant for many years and worked with thyroid patients. If you want to speak privately perhaps i can help but i would need to get more info from you and I am not sure how comfy you would be posting it on the site. I would need to know : you TSH, T4 total, T3RU, if you had an ultrasound, if you had any testing on the immune system: like blood work to check for thyroid antibodies -there are many. Sometimes the thyroid is hard to regulate in the beginning. If you want to send me this info, please feel free to send me a private message
Fibrokitty
Hello, MrsK, and welcome! You're in the right place. We're all struggling with various levels of this illness and your story sounds so typical of what we endure.
I really feel for you as I've now reached the point where even simple things are such an uphill chore for me. This is a brutal illness. All of the pain, fatigue and brain fog really wears away at us, doesn't it?
Your thyroid med situation is odd. Is there no other type of med you can take for your hypothyroid? For some reason the medicine is making the fibro flare. Maybe you have an allergy to the ingredients found in the med? I don't know if anyone else has had this type of reaction to thyroid meds. I don't take any so have no personal experience to offer to you.
Could you ask to be put on the list of people to be called if there's a cancellation at the endo's office? Sometimes you can get in earlier that way. September is such a long ways away from now!
The sinus and toothache might be related to TMJ. Do you grind your teeth at night? If so, you may have TMJ. Many of us with fibro also have TMJ. It's a real pain in the butt, to be sure but (expensive) guards can be made for your mouth that prevent night time teeth grinding.
I can honestly say that there's no going back to your old life, at least until better meds are found - or a cure. So learning how to cope is the next best thing to do. We all try to help one another with coping on this site because we're a heck of a lot stronger together than we are alone!
Please come back and read and write. This is such a great resource. I really do think it will help you with your feelings about fibro, plus find some tips on how to handle things.
Gentle hugs,
Petunia
My goodness, you have more than your fair share of illnesses, SuzyQ. I'm sorry to hear this, especially since you also have Marfan's. It seems that connective tissue illnesses are found in some fibro sufferers - especially Ehlers Danlos. It would make sense that people with connective tissue disorders would eventually suffer from fibro. But what a shame!
I hope your June 19th hearing goes really well and you're awarded SSDI. Keep us posted, please!
Petunia
Unfortunately Fibro has many strange symptoms. Nothing makes sense. Doctors have just band aids for answers. Just be persistent with your Doctors and see them when you feel you need to. Make sure you have a Dr who is listening because Fibro is a real illness. Sounds like a balancing act with the meds but it always is at the beginning. Good luck with that. Hope you feel better.
Thank you. I told my doctor when she first suggested it, that I didn't want it to be that because I couldn't wrap my mind around something you can't see on paper!
This is all so crazy but I do plan on calling the office to have them refer me to another endo doctor. We don't have many and only about 3 that are easy to understand. LOL and all have a long waiting list but september seems like forever when I can't get out of bed some mornings.
I do have TMJ and have for years. I did the guard thing but it hasn't seemed to bad in the last few years. My dentist said I needed my teeth cleaned and I needed the under the gum cleaning done. UMMMMMM, no, that is too close to the root. Its actually alot better today, except my collar bones were hurting today from the cleaning I guess? Weird random pain thing.
But thank you for your words. Today has been especially frustrating and depressing.
I do take a thyroid medicine and I felt better for a couple of weeks and then got 10 times worse with the joint pain. If I don't take the thyroid, I have the bad thyroid symptoms but when I take it hurt but it always tests at a normal level, other than the 1st time. I guess I'll will tough it out until I can see the endo.
You sound like you have lots going on. I feel bad for being whining when mine seems so simple!
I was the overtime queen at work this week. Now I wonder how I can get thru 40 hours. My job doesn't not have a very forgiving attendance policy so I make it work somehow. Its crazy how much it can all change in a few months. Thank you for your kind words.
The yoga sounds like a good idea. I do walk my little dog at least twice a day, about 30 minutes each time, even when it hurts. I know its good and it helps but some days, it takes it all out of me.
I like your I "can" ideas. I have learned what things I can let go of and what I can do. I did make it thru a trip to the zoo with my kids and grandson. I did sleep for 10 hours that night but I did it! And no, i haven't vaccummed in a few weeks....dog hair on the floor never hurt anyone, LOL. My house has never been messy before so I guess its a little ok now.
That is frustrating about your doctor. I'm sorry I think that is how my doctor felt too. I know they don't know but at least be nice about it, you know? Last visit, my doctor was telling me we could change my thryroid, yesterday she said do whatever you want until you see the endo dr. Really?