hollyhock Posted January 30, 2017 Share Posted January 30, 2017 I don't know if I have fibro but I'm starting to consider it as a possibility. I have the fatigue, the IBS and the widespread tenderness, but my question is about the pain. My pain doesn't seem to match the usual fibro pain. It started a year ago in my hands and fingers. Then I started having some in my feet. Currently, my feet often get stiff and the pain is still in my hands, fingers and wrists. My one thumb joint hurts all the time when I use it but the rest is random and moves around. I thought small joint pain was more of a rheumatoid arthritis thing. Could it be fibromyalgia? Blood tests are still clear aside from very slightly elevated CRP. Or maybe it's just impossible to know at this point. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 30, 2017 Share Posted January 30, 2017 When I get a fibro flare it will often start in my hands. My ankles and feet are often affected as well. One of the frustrating things about fibro is that the pain is not always the same and can move around. Another frustrating thing is that despite obvious inflammation, lab tests do not show elevated levels. Sent from my iPhone using Tapatalk 2 Quote Link to comment Share on other sites More sharing options...
HSmomof2 Posted January 30, 2017 Share Posted January 30, 2017 Mine also often starts in my hands, feet/ankles when it flares. No joint swelling at all, but definitely pain/stiffness. The pain does move around....my worst places are my upper back/chest and knees/elbows. It's a very frustrating condition. Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted January 30, 2017 Share Posted January 30, 2017 FWIW -- I had all those symptoms before I was diagnosed with hypothyroidism. At first I thought the pain in my hands was maybe due to arthritis. I was checked for RA and that was ruled out. I was told it was osteoarthritis. Eventually it also developed into carpal tunnel symptoms. I wondered if I was developing neuropathy in my feet. I considered fibro because I had so much achiness, but I didn't have any unusual pain at the typical fibro points. The untreated hypothyroidism really did a number on my entire body. 2 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 30, 2017 Share Posted January 30, 2017 I assumed that the doctor has tested the tender points for fibro. But perhaps that isn't the case? (I also have hypothyroidism but have appropriate levels with medication. ) Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
Only me Posted January 30, 2017 Share Posted January 30, 2017 I have similar symptoms. I've been diagnosed with fibromyalgia and ankylosing spondylitis. My back hurts too though. Just a thought to be tested for AS especially if you are extra stiff in the morning. Quote Link to comment Share on other sites More sharing options...
HSmomof2 Posted January 30, 2017 Share Posted January 30, 2017 Like Jean, I also have hypothyroidism, but my medication/thyroid levels are good and checked often. I still get the flare ups in my hands/feet, etc. 1 Quote Link to comment Share on other sites More sharing options...
SparklyUnicorn Posted January 30, 2017 Share Posted January 30, 2017 FWIW -- I had all those symptoms before I was diagnosed with hypothyroidism. At first I thought the pain in my hands was maybe due to arthritis. I was checked for RA and that was ruled out. I was told it was osteoarthritis. Eventually it also developed into carpal tunnel symptoms. I wondered if I was developing neuropathy in my feet. I considered fibro because I had so much achiness, but I didn't have any unusual pain at the typical fibro points. The untreated hypothyroidism really did a number on my entire body. How is that tested for? Did you have other symptoms? (sorry to hijack) Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted January 30, 2017 Share Posted January 30, 2017 (edited) How is that tested for? Did you have other symptoms? (sorry to hijack) It's a basic blood test for TSH, but a full thyroid panel (still just a basic blood draw) is the much preferred test. Other symptoms I had -- Weight gain that wasn't explained from over-eating or lack of exercising (a lot of mine was ascites--abdominal fluid retention) Increased blood pressure (probaby due to fluid retention) Foggy brain/inability to concentrate or remember even the simplest things Fatigue that wasn't reieved by sleeping/resting Dry skin and hair Dry eyes Gum issues Joint pain and stiffness Constipation/excess gas Nails that split easily Puffy face, especially around my eyes Feeling of fullness in throat (almost a choking feeling) A week or so before I was finally accurately diagnosed my sense of smell went wonky. I constantly smelled smoke when no one else did. That was extremely bizarre. Elevated liver enzymes Edited January 30, 2017 by Pawz4me 1 Quote Link to comment Share on other sites More sharing options...
Peaceful Isle Posted January 30, 2017 Share Posted January 30, 2017 My thyroid symptoms also started in my hands. I also have fibromyalgia but was diagnosed with that a few years after my hashimotos was diagnosed. 1 Quote Link to comment Share on other sites More sharing options...
hollyhock Posted January 30, 2017 Author Share Posted January 30, 2017 (edited) Thank you for the replies. Sounds like it's a possibility. I have not been tested with the tender points, but when I try it on myself, many of them hurt.Also, I am slightly hypothyroid and have been on trials of Synthroid in the past. These pains in my hands began while I was on it and my thyroid numbers were good.I also have PCOS so there might be some overlap of symptoms happening. ETA: Oh yeah, I also have no joint swelling at all. Edited January 30, 2017 by hollyhock 1 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 30, 2017 Share Posted January 30, 2017 I would recommend getting a full thyroid panel done. Just the regular thyroid test will often not catch problems. I don't think that you can have an official fibro diagnosis without a tender point test. I do not have swollen joints. I do however have edema (swelling) in general (like my feet for example). Quote Link to comment Share on other sites More sharing options...
Ellie Posted January 30, 2017 Share Posted January 30, 2017 Thank you for the replies. Sounds like it's a possibility. I have not been tested with the tender points, but when I try it on myself, many of them hurt. Also, I am slightly hypothyroid and have been on trials of Synthroid in the past. These pains in my hands began while I was on it and my thyroid numbers were good. I also have PCOS so there might be some overlap of symptoms happening. ETA: Oh yeah, I also have no joint swelling at all. I would bet that you have not had a complete thyroid panel (e.g., with the labs that actually matter), and that your doctor has a very skewed idea of what "good" thyroid numbers are. Synthroid (and the generic levothyroxine) do a poor job of treating hypothyoid issues because they only contain T4, when your body also needs T3. Many, many people have been diagnosed with fibro when, in fact, they were hypothyroid. "Slightly hypo" is still hypo. A big percentage of people who have thyroid issues have Hashimoto's thyroiditis, an autoimmune disease; Hashi's has a genetic component, but it also needs a trigger. Being under-medicated for a long time can be that trigger. It's what happened to me. I was undermedicated for 20 years. Thank goodness I finally saw a doctor who diagnosed Hashi's, and who was willing to treat me properly These are the labs you need: . If you haven't done so yet, you might consider doing the Autoimmune Protocol. When I did it, I found out that my achy joints (and my hands, most of all) were caused by the small amount of dairy I was consuming--just some cream in my tea, one cup in the morning and one cup at night. As long as I avoid that, I have very little joint pain. And when you get your labs done, your TSH should be in the lower fourth of your lab's ranges; Free T3 should be in the upper fourth; Free T3 in the upper half. And finally, check out Stop the Thyroid Madness. Quote Link to comment Share on other sites More sharing options...
Granny_Weatherwax Posted January 30, 2017 Share Posted January 30, 2017 (edited) Rabbit trail question: For those of you who experience ankle/foot pain, can you describe the pain? When my feet hurt, I have bilateral pain along the achilles tendon. This is the only foot/ankle pain I have. Nothing on the sides, nothing near the ball. Is this what you feel? Edited January 30, 2017 by Scoutermom Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 30, 2017 Share Posted January 30, 2017 Rabbit trail question: For those of you who experience ankle/foot pain, can you describe the pain? When my feet hurt, I have bilateral pain along the achilles tendon. This is the only foot/ankle pain I have. Nothing on the sides, nothing near the ball. Is this what you feel? I have stabbing pain in the joint. But my feet and ankles tend to swell (not the joint itself but the soft tissue). I don't know if this is specifically fibro though. I have numerous diagnoses and sometimes it's hard to separate out symptoms and diagnoses. Quote Link to comment Share on other sites More sharing options...
hollyhock Posted January 30, 2017 Author Share Posted January 30, 2017 (edited) My foot pain is very random. Sometimes it's the ankle, sometimes the bones along the top of the foot going to the toes. Sometimes big toe joint. It moves all over. I have had full thyroid panels done, and I have them done every 6 months. My thyroid numbers are not in the ideal range, but I really don't think any of my symptoms are because of it. I know that sounds odd, but I've been on Synthroid for a good nine months at a time, had optimal numbers and not felt ANY better. I also don't have any anti-TPO or whatever it's called that would indicate Hashi's. The only thing that's helped me feel better so far is birth control pills, and that was for the PCOS. So, it's all a big weird mystery... For those of you who have fibromyalgia, do you ever get random sore throats? I've had that for a few years, and I've seen it listed as a symptom of chronic fatigue syndrome, which also overlaps a lot with fibro, but I don't fit the criteria for the amount of fatigue for CFS. Edited January 30, 2017 by hollyhock Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 30, 2017 Share Posted January 30, 2017 Yes, I get sore throats - more like a raw throat than a sore throat from a virus, if that makes sense. But again - not sure if it is specific to fibro. I have autoimmune problems including a lot of allergies that seem to result in a raw and swollen throat including swallowing problems and at times my throat closing off. Quote Link to comment Share on other sites More sharing options...
Ellie Posted January 31, 2017 Share Posted January 31, 2017 My foot pain is very random. Sometimes it's the ankle, sometimes the bones along the top of the foot going to the toes. Sometimes big toe joint. It moves all over. I have had full thyroid panels done, and I have them done every 6 months. My thyroid numbers are not in the ideal range, but I really don't think any of my symptoms are because of it. I know that sounds odd, but I've been on Synthroid for a good nine months at a time, had optimal numbers and not felt ANY better. I also don't have any anti-TPO or whatever it's called that would indicate Hashi's. The only thing that's helped me feel better so far is birth control pills, and that was for the PCOS. So, it's all a big weird mystery... For those of you who have fibromyalgia, do you ever get random sore throats? I've had that for a few years, and I've seen it listed as a symptom of chronic fatigue syndrome, which also overlaps a lot with fibro, but I don't fit the criteria for the amount of fatigue for CFS. That your thyroid numbers are not in the ideal range means that you are going to have symptoms. If your full thyroid panel was anything except Free T3, Free T4, and Reverse T3, they did not provide actual usable information. Also, have you had an ultrasound of your thyroid? I don't have any antibodies, either, but I have a small nodule, and that means Hashi's. Here's the long and pathetic list of symptoms from Stop the Thyroid Madness. I had many of those symptoms, none of which caused my doctors to be concerned. Here's an article about PCOS and hypothryoidism from Stop the Thyroid Madness. And finally, have you done the Autoimmune Protocol? Diet really and truly can affect how you feel. Quote Link to comment Share on other sites More sharing options...
CadenceSophia Posted January 31, 2017 Share Posted January 31, 2017 Synthroid doesn't work for everyone and if your dr was dosing incrementally until your TSH was "in the right range", you were under medicated anyway. New Doctor, New tests, trial of natural desiccated thyroid like Armour or Naturethroid. Otherwise you will be chasing symptoms with everything under the sun when the mystery was solved at "thyroid numbers are not in the ideal range" 1 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 31, 2017 Share Posted January 31, 2017 I would recommend going to a good naturopathic doctor. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
HollyDay Posted January 31, 2017 Share Posted January 31, 2017 you said labs were clear, but how indepth did they test the thyroid? Also, any symptoms of connective tissue disorders (EDS family)? Did they do a hormone panel? And if so, was that within range also? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 31, 2017 Share Posted January 31, 2017 I just want to say that while fibro can be confused with a lot of other conditions, it is still a real condition on its own. Sent from my iPhone using Tapatalk 1 Quote Link to comment Share on other sites More sharing options...
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