milknhoney
New member
- Joined
- Dec 1, 2022
- Messages
- 5
- Reason
- Undiagnosed
- Diagnosis
- 00/0000
- Country
- US
I should probably wait until I know more but it's another month until my next rheumatology appointment and I'm tired of waiting!
Will try to keep it concise... about a year and a half ago I discovered alopecia areata. I went on the autoimmune paleo diet (AIP) to reverse it and I am happy to say it helped a lot, as well as resolved digestive pain and restored a lot of energy! I was feeling awesome until about a year ago I developed pain under my rib cage. Both sides, mostly in the front but it jumps around so sometimes one side, sometimes the other, sometimes it moves from the front to the sides. At first I thought I had reintroduced a food I shouldn't have, went back on the strict version of AIP but it didn't change a thing. I spent a lot of time chasing a diagnosis with gastroenterology, so I know it's not IBD or my gall bladder. Discovered I have exocrine pancreatic insufficiency and started enzyme treatment, but that wasn't the cause of the rib pain. I found a new primary doctor who agreed to give me a full thyroid panel, tested iron levels, tested various markers for inflammation and autoimmune. All tests normal. Ordered a back x-ray which showed mild scoliosis. Went to a PT who untied some major knots in my shoulder blades but could find no cause for the rib pain. Doctor referred me to a rheumatologist as my one positive blood test was for HLA-B27. I finally saw him a month ago and he does not think I have an HLA-B27 related disease. He ordered a chest X-ray and the same inflammation/autoimmune bloodwork I already had done that was normal. I've called several times to find out the results and each time I'm told someone will call me to tell me the results but so far no phone call! I guess I'm waiting until my January follow up appointment to find out but I'm assuming it will be normal. He also gave me a script for celecoxib to help with the pain, but it doesn't do anything.
Since the rib pain started, I had more symptoms develop. I have muscle pain. At first it was in my legs. I woke up and felt like I had just started a new workout routine, except I hadn't. I also get pain in the bottom of my feet. My family went to Disneyland and the walking was just horrible. They were burning and I was constantly having to stop and put my feet up. I occasionally get pain in my pelvic area. More recently, I started getting aches in my arms. Oh, and I am almost always sore in my neck and shoulders. Sometimes I have pain in my hips. Sometimes I have pain in my knees. Recently, I woke up one day and felt like I had pulled a calf muscle, but I hadn't done anything to cause that. One day last week I got the most horrible pain in my arm. It was deep pain, almost like it was coming from my bones. It radiated up from my elbow to my shoulder, then it switched and started radiating down to my wrist. Back and forth. I took one of those useless celecoxib caps and it did nothing. I cleaned my house last week and by the time I was done I was absolutely at the end of myself. I fell into the bathtub for an epsom salts bath and then had to lay on the bed for two hours before I could do anything else. I also get headaches, which normally coincide with red/dry eyes. All of these symptoms come and go. Most of the time I am not experiencing them all at once. They just take turns bothering me. Sometimes it will just be a few hours. Sometimes it will be weeks.
I started doing Pilates every morning. Usually just 10-15 minutes, try to do 30 on the weekends. It helps tremendously. Sometimes it seems like my muscle soreness is a direct result of the workouts. However, I've been pretty consistent for several months so seems like at some point I should have stopped experiencing the exercise-induced soreness.
Given that everything appears "normal", I've arrived at the conclusion that I must have fibromyalgia. I guess there's always the chance that my last bloodwork and x-ray show something that wasn't showing before, but for now that's my working assumption until I have my next appointment and am told differently.
So after all that, here are my questions! First, does my description sound like fibromyalgia to you?
Second, I have primarily musculoskeletal symptoms. I do experience fatigue, but ever since starting the paleo diet, that has improved quite a bit. I have some sleep issues - waking up super early and not falling back asleep, but I also adjusted my bedtime earlier which allows me to get 7-8 hours most nights. I don't have any cognitive symptoms as far as I can tell. Can you have fibromyalgia with no cognitive symptoms, minimal sleep issues, and manageable fatigue?
Third... not sure how hard to try to feel better before my next appointment. I know that sounds weird. It's just that I would like to have a diagnosis, and I'm worried that if I successfully control my symptoms, it will prevent a diagnosis. Two years ago my fatigue level was unbelievable. It's pretty manageable now, but I'm sure that if I went off paleo that it would come back. So in my opinion, fatigue is definitely a symptom. Would a doctor see it that way, though? Same with sleep. I have issues, I just also happen to be managing it okay so the impact is not so bad. The area that I am having the most difficulty is pain/soreness. Pilates helps a lot but not always. I've been doing a lot of research on other strategies/supplements to try. The question is, do I wait until after I have seen the doctor again? On the one hand, I really want to feel better. On the other hand, I'm afraid to.
Final question is - having ruled out thyroid, anemia, and autoimmune disease, what other disorders will I need to get tested for before fibromyalgia can be diagnosed? Is it wishful thinking to hope the rheumatologist can solve this and I won't get referred to yet another specialist?
Thank you for reading this long post. Any insights appreciated!
Will try to keep it concise... about a year and a half ago I discovered alopecia areata. I went on the autoimmune paleo diet (AIP) to reverse it and I am happy to say it helped a lot, as well as resolved digestive pain and restored a lot of energy! I was feeling awesome until about a year ago I developed pain under my rib cage. Both sides, mostly in the front but it jumps around so sometimes one side, sometimes the other, sometimes it moves from the front to the sides. At first I thought I had reintroduced a food I shouldn't have, went back on the strict version of AIP but it didn't change a thing. I spent a lot of time chasing a diagnosis with gastroenterology, so I know it's not IBD or my gall bladder. Discovered I have exocrine pancreatic insufficiency and started enzyme treatment, but that wasn't the cause of the rib pain. I found a new primary doctor who agreed to give me a full thyroid panel, tested iron levels, tested various markers for inflammation and autoimmune. All tests normal. Ordered a back x-ray which showed mild scoliosis. Went to a PT who untied some major knots in my shoulder blades but could find no cause for the rib pain. Doctor referred me to a rheumatologist as my one positive blood test was for HLA-B27. I finally saw him a month ago and he does not think I have an HLA-B27 related disease. He ordered a chest X-ray and the same inflammation/autoimmune bloodwork I already had done that was normal. I've called several times to find out the results and each time I'm told someone will call me to tell me the results but so far no phone call! I guess I'm waiting until my January follow up appointment to find out but I'm assuming it will be normal. He also gave me a script for celecoxib to help with the pain, but it doesn't do anything.
Since the rib pain started, I had more symptoms develop. I have muscle pain. At first it was in my legs. I woke up and felt like I had just started a new workout routine, except I hadn't. I also get pain in the bottom of my feet. My family went to Disneyland and the walking was just horrible. They were burning and I was constantly having to stop and put my feet up. I occasionally get pain in my pelvic area. More recently, I started getting aches in my arms. Oh, and I am almost always sore in my neck and shoulders. Sometimes I have pain in my hips. Sometimes I have pain in my knees. Recently, I woke up one day and felt like I had pulled a calf muscle, but I hadn't done anything to cause that. One day last week I got the most horrible pain in my arm. It was deep pain, almost like it was coming from my bones. It radiated up from my elbow to my shoulder, then it switched and started radiating down to my wrist. Back and forth. I took one of those useless celecoxib caps and it did nothing. I cleaned my house last week and by the time I was done I was absolutely at the end of myself. I fell into the bathtub for an epsom salts bath and then had to lay on the bed for two hours before I could do anything else. I also get headaches, which normally coincide with red/dry eyes. All of these symptoms come and go. Most of the time I am not experiencing them all at once. They just take turns bothering me. Sometimes it will just be a few hours. Sometimes it will be weeks.
I started doing Pilates every morning. Usually just 10-15 minutes, try to do 30 on the weekends. It helps tremendously. Sometimes it seems like my muscle soreness is a direct result of the workouts. However, I've been pretty consistent for several months so seems like at some point I should have stopped experiencing the exercise-induced soreness.
Given that everything appears "normal", I've arrived at the conclusion that I must have fibromyalgia. I guess there's always the chance that my last bloodwork and x-ray show something that wasn't showing before, but for now that's my working assumption until I have my next appointment and am told differently.
So after all that, here are my questions! First, does my description sound like fibromyalgia to you?
Second, I have primarily musculoskeletal symptoms. I do experience fatigue, but ever since starting the paleo diet, that has improved quite a bit. I have some sleep issues - waking up super early and not falling back asleep, but I also adjusted my bedtime earlier which allows me to get 7-8 hours most nights. I don't have any cognitive symptoms as far as I can tell. Can you have fibromyalgia with no cognitive symptoms, minimal sleep issues, and manageable fatigue?
Third... not sure how hard to try to feel better before my next appointment. I know that sounds weird. It's just that I would like to have a diagnosis, and I'm worried that if I successfully control my symptoms, it will prevent a diagnosis. Two years ago my fatigue level was unbelievable. It's pretty manageable now, but I'm sure that if I went off paleo that it would come back. So in my opinion, fatigue is definitely a symptom. Would a doctor see it that way, though? Same with sleep. I have issues, I just also happen to be managing it okay so the impact is not so bad. The area that I am having the most difficulty is pain/soreness. Pilates helps a lot but not always. I've been doing a lot of research on other strategies/supplements to try. The question is, do I wait until after I have seen the doctor again? On the one hand, I really want to feel better. On the other hand, I'm afraid to.
Final question is - having ruled out thyroid, anemia, and autoimmune disease, what other disorders will I need to get tested for before fibromyalgia can be diagnosed? Is it wishful thinking to hope the rheumatologist can solve this and I won't get referred to yet another specialist?
Thank you for reading this long post. Any insights appreciated!