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txnursie Posts: 15
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Does anyone else experience this? I have been having horrific knots forming on muscles in forearm, deltoid, biceps, thighs, all over. Some of them are as big as eggs and kinda shaped that way, too. You can feel them just by running your hand over them but what's even creepier is that you can see them, too. They are extremely painful!! I have been digging into them massaging them hard to try to get some relief, applying icy hot, biofreeze, voltaren cream, taking pain meds, muscle relaxers. I have some in my arms and legs and also in the hip/buttocks area. This is miserable and I'm not sure how much more of this I can take! Has anyone else had this happen to them? Have your doctors commented on what's causing it? What do you do to make them more tolerable? Any advice would be greatly appreciated. |
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hatbox121 Posts: 10501
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Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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txnursie Posts: 15
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Hello, habox, thanks so much for responding!!! I clicked on the links and found the info on enthesitis~ sounds like it could be very possible with me, as some of the knots/nodules are near points of insertion (muscle to bone). I had an EMG and NCV done Friday and will get the results this week. I had them done in '06 so we have a baseline for comparison. I just hope for some more answers soon. I was in tears and couldn't get relief no matter what I did! Would you believe that after I went on my facebook and basically cried out pathetically in desperation for people to pray for me. I got tons of replies... the pain finally eased up and I slept... when I got up, the pain was MUCH better and I had a better afternoon and evening. Went back on facebook and so many people said they had been praying. I have always believed in prayer but I keep seeing more and more evidence. How are you feeling these days? I haven't seen you post much lately but I'm still not sure how to find current posts very easily. It was very nice hearing from you~~ take care and I hope you're having a wonderful new year so far~~~!!! |
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DonnaEvans77 Posts: 2533
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txnursie, I've never dealt with that. So sorry you're in so much pain from that. Have you been to the doctor and have any tests done on them to see what's going on? So sorry I haven't been around. Please keep us posted on what you find out is going on. GBHugs, Donna "I am not a Doctor and there is NO substitute for getting proper medical diagnosis and advice."
I have Asthma, Bursitis in both hips, Celiac Disease, Dermatitis Herpetiformis (Skin version of Celiac Disease), Macular Degeneration, OsteoArthritis (according to Bone Density scan results, the area in my neck where OA is bad, is showing weakness in the bone. I start on Boniva, as of July 4, 2012 for it. |
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hatbox121 Posts: 10501
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Prayer is a powerful thing! I'm not doing so hot these days to be honest. Found out my SI joint is fused mostly together on it's own which isn't good. We'll see what the rheumy says about that in about 2 wks. My son is being looked at for arthritis now as well which isn't good. My back is flaring. And on and on. Anyway, I'm glad I could help. Even if that's not it, perhaps it will help get you in the right direction. Have you told your dr about it? Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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txnursie Posts: 15
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Oh hatbox I'm so sorry about the fusion - I'm glad you're seeing the rheumy soon and hope you'll get some good answers. As far as your son is concerned, I really, really hope he doesn't have arthritis? How old is he? Hah!! As if that makes too much difference as we all know arthritis is no respecter of youth! Well, I truly hope he's negative for arthritis and has something simple going on that can be resolved by NSAIDS or something. Please let us know. Donna Evans it's so nice to hear from you!!Thanks for your reply as well. Yes, I've been at the neurology clinic. I was there Friday for EMG and NCV and will go again today for a test for dizziness. (veng?) something like that... I saw the pain mgmt doctor yesterday but that just consisted of a few questions and giving me the prescriptions. I told him what was going on and he felt some of the knots, he called them "narts" because he's from India, maybe it was more like "nards" which made me giggle. I didn't let him see me. He asked if they were maybe fatty tissue deposits but then when he felt them they were hard as rocks. Maybe answers will come soon. It was good to hear from both of you, please don't be strangers! You will be in my prayers! |
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DonnaEvans77 Posts: 2533
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It's great to be back, sure missed you all. I've been getting caught up on things I haven't been able to do for a while. Got most of the house cleaned today, but I'm done for the day, the rest can wait till tomorrow or Friday. Wow, hope they figure out what's going on with those knots, they sound so terrible, txnursie. Keep us posted, and prayers for everything that is dealing with the nasty arthritis. hatbox, so sorry the joint is fused. Is there anything that can be done. Hope and pray your son doesn't get diagnosed to having arthritis, and that it's something simple. GBHugs, Donna "I am not a Doctor and there is NO substitute for getting proper medical diagnosis and advice."
I have Asthma, Bursitis in both hips, Celiac Disease, Dermatitis Herpetiformis (Skin version of Celiac Disease), Macular Degeneration, OsteoArthritis (according to Bone Density scan results, the area in my neck where OA is bad, is showing weakness in the bone. I start on Boniva, as of July 4, 2012 for it. |
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hatbox121 Posts: 10501
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He's 4 1/2. My daughter has JIA and is 8. I'm hoping that it's not going to get him too. It appears that I've passed down all the crappy genes. Nah, nothing can be done at this point. Hoping to get some answers as to why it's fused over the last couple of years. The NP mentioned anklyosing spondylitis. It could also be psoriatic arthritis. Either way, or something else, hoping to stop any more joints from doing the same. I don't want to lose any more mobility than I currently am. Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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DonnaEvans77 Posts: 2533
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I hope he doesn't have it either. Sorry nothing can be done for you. Hopefully no more fusions like that. GBHugs, Donna "I am not a Doctor and there is NO substitute for getting proper medical diagnosis and advice."
I have Asthma, Bursitis in both hips, Celiac Disease, Dermatitis Herpetiformis (Skin version of Celiac Disease), Macular Degeneration, OsteoArthritis (according to Bone Density scan results, the area in my neck where OA is bad, is showing weakness in the bone. I start on Boniva, as of July 4, 2012 for it. |
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hatbox121 Posts: 10501
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How did the dizziness test go? What kind of test was it? Vertigo(I have it) is a common dizziness causer as is b/p issues(which I also have). Amy~ “When you come to the end of your rope, tie a knot and hang on.” ~Franklin D. Roosevelt
Current dxes-Ehlers Danlos Syndrome, Mitral Valve Prolapse w/regurg, 2 other heart valves with regurg, POTS, DDD, scoliosis, various OA, polyneuropathy of unknown origin, SI joint dysfunction/fusion/collapse, chronic rotar cuff tendonitis, impingement syndrome of the shoulder, chronic bursitis in various locations, degeneration of the sternum, vertigo, GERD, FM, CFS, CPS, various bone marrow lesions, brain lesions of unknown cause, migraines, TMJ, vertically bulging discs, Raynaud's, anemia, tinnitus, high copper levels, borderline glaucoma, colon polyps, intermittent RLS, Vit D deficiency, depression, Eye accomodation disorder, Essential tremor, recurrent kidney stones, sacral spine disorder, inflammed tendons, and inflammation of spinal nerves(no specific dx).
I'm am not a dr. I am not a substitute for a dr. All advice I give is based on research and my personal experiences. |
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