I just noticed all the posts earlier on 9/6...they were real helpful. Thanks :)
Hi! Have a seat because this may take me a while!!!*sigh* OK - I started having hip and buttock pain in 1996. After this went on and was not getting any better I saw a Dr. - pulled muscle? ??? Gave me a NSAID and said it should feel better. Just progressed so much that I could not walk without severe pain in the joint(L side). Had PT,bonescan, bloodwork,myelogram, steroid injection. "It's arthritis - just gonna have to live with this." After about a year, just woke up one day and it was better. Then tried to get pregnant - took about 9 months. Very irregular cycle.. Uncomplicated pregnancy - hip did great until last month. Very difficult delivery - pelvis would not open. Traumatic childbirth. Huge vaginal tears with huge episiotomy,hematoma, etc. Hip became unbearable after childbirth. Saw a female ortopaedist because mine was doing a surgery fellowship eleswhere. She oders lots more bloodwork - to ck. 4 lupus,Rh. Arth. etc. A test called a HLA-B27 came back +. She said it is associated with certain types of arthritis(namely Ankylosing Spondylitis) so I saw a Rheumatologist who said Xrays did not at that point show the picture typically seen but it can take years. So thus began the journey of joint pain - no longer in just the hip but all over. (only 29 yrs old at the time. Wnet through SEVERE post-partum depression and thought I would die!! The pain comes and goes and I have flares sometimes lasting months. Have seen several Rheumatology docs and they all mentioned possibility of Fibro. In 2006, became pregnant with kid #2. Felt good during pregnancy then the arthritis/fibromyalgia is working OT. I have never felt worse. 4 months post baby - hair began falling out at alarming rate, could hardly get out of bed yet could not sleep, periods were HEAVY, edema and swollen neck, wheezing and coughing. Saw ENT and found out I had Hypothyroid.. Recently saw an endocrinologist and he says it is Hashimotos which is autoimmune thyroid. I am only on 50 mcg Levothyroxine(Synthroid). Hypo symptoms have improved but the arth. is so so so so bad!!!! He put me on Cymbalta and it made me sweat like a dog!!!LOL Had to stop it. But.... it sure did help my pain, more than any other thing I have tried. He says it is fibro. 2ndary to arthritis. And since my arthritis is an autoimmune disorder, I am more likely to suffer from other auto. disorders. I swear I think this all goes back to a bout of Mononucleosis I had in 1995. That's when it all started. It affects me from my head to my toes - even vaginal symptoms. I feel so old and I am only 37. I have 2 boys - 8 and 1 yr old. I have such a hard time keeping up. I really wish i had answers 4 u. I am suffering in the same boat with you. What I have shared with you, I know has not helped you, but thanks for letting me vent because I know you know how this feels. I just want to cry. I have been told - it will get worse and you will have to live with it. my hubby is great but until you have suffered the constant pain and fatigue - u just don't know what someone is enduring on a daily basis just to function. I am glad I do not suffer alone, that someone out there has Fibro and Hashis like me :-) Hope you feel better. Thanks for letting me gripe a little! ~Amy~
Sorry it took me so long to respond back...but I've been very ill with all of this. The switch to Amour Thyroid has just started to bring about a lot of problems. No other way to say it...I've just been sick sick sick! You might want to have your doc check your adrenals. thryroid meds simply don't work if your adrenals are low. My doc has increased my cortisone and DHEA(stress hormones from the adrenals) so that my body can utilize these drugs effectively. We'll see what happens. I'm a hairdresser and have had to stay out of work during the last couple weeks because my pain and NOW my sickness that has been sooo bad. Three days ago, I saw a new doc who specializes in Fibro. I don't know where you live but he's here in Santa Barbara CA. He explained a lot of things that I already know, but also a theory that is very interesting: Fibro is threefold 1) Hormone imbalances ie our Hashi's 2) Hypersensitivity to pain and 3) Sleep disturbances ie inability to fall into a deep sleep to regenerate our muscles. ALL of these three areas must be addressed for us to begin to be well. I sort of knew some of these things to be true but now are convinced that these areas are certainly connected. His protocol for me is to first get my Hasimotos under control. Easier said than done. By the way, he works in conjunction with my endo. He prefers that all of his patients are on Armour Thryroid. In the meantime he's signed me up for a sleep study next week. Fibro patients have really screwed up brain waves. He then addresses that with very specific drugs. i know exactly what you're going through. I'm a little older than you, though and my son is fifteen. I know it's a lot more stress when your kids are young. You know, its all so odd. I, too, know this whole thing started when I HAD MONO TOO! It was way back when I was 24. It was over a year until I got over it and I swear I've really never been well since. There's got to be a connection...a virus I'm sure. Hang in there and start searching for more doctors in your area. If you get desperate you can always come to California. Naomi Perry MD and Victor Rosenfeld MD. It took me along time to find these guys, but I think I'm on the right track. Hang in there, I know its hell. I, too, have a husband who's very supportive. Take care, we'll talk some more. Annie
Hi Annie! I am SO glad to know there is someone out there as screwed up as I am. It has been an absolute horrible week - pain wise!! After a while, this all gets to me and I feel like if I could just have one good day without pain, it would be a great day! I went to get Rx filled for Mobic - even with insurance it was $80. I am on a tight budget right now because I am only working part-time to be home with my baby.When I work, I am on my feet the whole time( I am a Respiratory Therapist) and by the time I get home, I can hardly walk sometimes. I really need the Mobic, but I can't see 80 bucks!! I have taken NSAIDS for so long, I am on Nexium for GERD. I eat Ibuprofen like tic-tacs. I HATE medicine. I have not been able to use my left wrist for over a week now. There's a lump at the joint. And I have been SO mean. Do you or have you in the past had plantar's fascitis with your feet? Since your are a hairdresser, I know you are on your feet a lot as well. This is so painful and I have had it in both feet. Currently in the left foot now. It hurts so bad and so do the steroid injections. I have so many inflammatory symptoms from scalp to feet. This is a personal question - but do you have any recurrent vaginal infections associated with the fibro./hashis? I have been to so many doctors/rheumatologists/now the endo. - who by the way DID check adrenals. Checked cortisol levels among 13 other tests. Says it is Hashimotos and TSH is in range on 50 mcg. Synthroid. I would love to find a sympathetic MD here in S.C. - Could we be any further apart? Thank you for all your info.! I sure hope you feel better soon - : ) ~Amy~
I'm so glad you responded back. I swear, I feel for you...just like I feel for myself! This just isn't fair, suffering this much. I don't have plantar's fascitis and never have, just intense body pain primarily centering in the trunk of my body, usually my back. It starts to creep in when I stay in one place for a long time. It's as if my whole body becomes in a huge muscle spasm. So, you can imagine that about 3 or 4 in the morning when I've been lying still for many hours, I awake with a start in horrific pain. I literally have to get out of bed (still drugged from all the meds I've taken early in the evening so I could actually GET to sleep), and drag myself around the house for a half an hour or so to loosen up my muscles so the pain will alleviate a little. Often, the pain doesn't go away enough for me to go back to sleep and I end up exhausted. It seems to come in waves, however. Lately, I've actually been able to sleep the night though. But when morning comes, I feel like I've been beaten up. I pray every evening that I make it through the night without having an interrupted sleep. At least then I have a chance of having a halfway decent day. I say halfway because It's never really good...I'm sure you know what I mean. This is all soo insane. I wasn't always this bad! As I said before, I've never been really well. All through the nineties, when my son was little, I was always fatigued(never could make it through a day without a nap) and was constantly achy all the time. Many times during that span I went to doctors complaining of vague symptoms but all the doctors said I was fine. Until...2 years ago when it got so bad and I was diagnosed with Hashimotos!!! By the way, when were YOU diagnosed with Hashi's? And if you don't mind me asking, what have been your lab results? Your TSH? Your free T3 and T4 and you antibody count? You said your adrenals were tested. Did you take a 24hr urine test? I ask this because most people with Hashimoto's do much better when their TSH is less than 1. Six months ago my TSH was .001 and I was feeling very much better than I'm doing now. I'm certainly not a doc but 50mcg of Synthroid seems real low considering how much you're suffering. I suspect you are really still hypothyroid and don't realize it. Last week, when I saw my new Fibro doc, the first thing I told him was that along with the Fibro I had Hashimoto's. He instantly came back with "its all the same thing." I knew that he was right on target...I've sort of always known this. You just don't wake up one day and high antibodies for Hashimotos's. Has your doc ever addressed the sleep issue that apparently has been widely accepted as a huge contributor to Fibro? Keep searching for more doctors! That's what I'm doing. I just won't accept not being well! I've cried so hard and so often about this. I will get better and so will you! Oh, and as for the vaginal infections, I've never had anything wrong down in that area...thank God. But guess what? I have chronic diarreha...and I mean when it's bad it's really bad! Try doing someones hair and having to run to the bathroom sometimes 3 times when your blow-drying them. I had a colonoscopy in June and it showed that I had Microscopic Colitis...great! Yes, I live on Imodium. I have found in talking to Hashimoto's patients, that we have all sorts of weird chronic stuff going on. It's so odd, people look at me and say "Annie you look so good, I can't believe you suffer like you do" or "what did you say was wrong with you...your thyroid? I thought you had all of that worked out by now" Geez, I just want to scream,"you guys just don't get it, I'm sick! Yes, I carry on and might look OK but I suffer so much"! It's so damn frustrating. I know you know what I mean. Mobic. Is is a painkiller? Does it really work for you? Nothing ever works for my pain...even Vicodin. I'll definitely try it, though, it it works. Also, investigate Armour Thyroid. I'll keep you posted on how feel after I'm fully transitioned on it. And don't give up. Hang in there. There's always hope. I guess I needed to vent too. Annie PS get back to me about your labs.
Hi Annie! Are you safely away from the fires? How awful! To answer your question about labs, I don't know my numbers - my Endo did not tell me. I have been on Synthroid since April but I do not know what my last numbers were. Guess I should have asked. I just know before I actually went on the Synthroid - my TSH and free T4 were only a "little" out of range - according to the ENT I was seeing. However, after several months and after increasing the Synthroid, I still had no relief. At the time, he checked APO antibodies and said they were OK. He could not say why I had Hypothyroid, just that I did. Was referred to Endocrinologist - supposedly a very good one - and he is the one that drew all the labs(CBC,antibodies,TSH, free T4, T3, CBC, Cortisol, Lipid profile, metabolic profile, estrogen, progesterone,testosterone,liver profile,etc.) He said when I returned that the only thing that was remarkable was antibodies and I have Hashimotos and was likely secondary to my arthritis and I have fibromyalgia as well, secondary to arthritis(which is atoimmune) I told him the ENT said antibodies were OK. He said he did not order the correct test. SO I go back in January. Supposed to be taking Cymbalta but it made me have one big continuous hot flash. To answer your question about Mobic: it is an NSAID. I have taken it before and it does seem to help . Last night, I could not sleep at all. Took a flexeril and finally got to sleep. Then my 9 year old was up "scared" for 2 hours. He is going through a scaredy cat stage. No rest for the weary. Now it is very early and my 1 year old is "off the chain". So begins another day in the life of a young geezer.LOL. My endo. said the best advice he could give me is to keep a very good relationship with my rheumatologist. Which in itself is hard because he is so strange. They all seem to be. Every one I have been to is SO weird. I feel so alone in this battle. Doctors automatically call it depression if you are a woman. So I often suffer in silence. Feel like a total hyperchondriac, Anyways, hope today is a good day for you! ~Amy~
I've had the same symptoms. I have had a diagnosis of hypothyroid and fibromyalgia since around 28 years or so and am now 71. Flu like pain, etc., recently got much worse and finally had a doctor that had me get blood tests for Hashimoto's thyroiditis. Turns out that is my problem. With your symptoms, I'd ask for testing for Hashimitos.