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AnJeL Posts: 16
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I was diagnosed with Fibro in 2007 and for the first time started having swelling in my hands, elbows, knees, and ankles, sometimes severe, after mild to moderate exertion. I garden, planting baby trees, bushes and flowers, a little fruits and vegetables here and there. I've been doing this for 3 years with nothing more than the typical muscle and nerve pains. It has been a great way to build some muscle and over time alleviate some of the problems I've had with Fibro. This year since early May, however, has been quite different. Even just an hour or two of being out in the yard, slowly and gently weeding or tending to my plants, brings on terrific joint pain and swelling in the extremeties from my elbows and knees down. Housework has had the same effect, so I know it's not something related to outdoors. I even feel like I am retaining fluid near the core of my body when the swelling is bad. My old clothes don't fit in the waist and I've gained a little weight even though I eat a bit less than I used to. I've been tested and cleared for RA. My blood rheumatoid factor came up positive in the winter, but hand X-rays showed no joint inflammation in January. I haven't seen the Rheumy yet since this swelling started in early May, but have seen my regular doc and the Endocrinologist with no answers. While I'm waiting to see the Rheumy, has this happened to anyone else??? I'm afraid that this is a sign of an autoimmune disorder that has been as yet undetected or that this swelling could become more permanent. Please share your experiences! |
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MoiraWolf Posts: 3410
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No, I don't believe joint swelling is a symptom of Fibro, at least none I've ever encountered. Some other co-morbid conditions can cause them tho, like RA and I have bursitis in one hip. The rheumatologist is the person to see if you suspect an auto-immune disorder. And if you've had one RA test positive, no changes on an Xray may just be too soon for damage to have occured yet. I'd see the Rheumy, get a repeat on the blood work, and have Xrays and maybe an MRI done. You definately need to find out what's going on. And welcome tothe group! You'll love it here. I am not a medical doctor and any medical opinion I give is based on personal experience and/or research. It is not intended to suppliment or replace your doctor. Follow at your own risk.
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Enalapril 10mg
Metoprolol ER 50mg
Citalopram 40mg
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Hydroxyzine 25mg
Carbidopa/Levadopa 25/100mg
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Dx: Fibromyalgia, chronic fatigue syndrome, obstructive sleep apnea, restless leg syndrome, degnerative joint disease, hypertension, diabetes type II, irritable bowel syndrome, plantar fasciitis, reactive airway disease, chronic allergies, hashimoto's disease, TMJ, morbid obesity, major depressive disorder, generalized anxiety disorder, post traumatic stress disorder, seasonal affective disorder
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rwslove Posts: 459
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Welcome AnJel. I think Mo is right. I don't think joint swelling is a symptom of fibro because that's one thing my dr and I talked about. It does sound more like a type of arthritis or other issue. Hope you get it figured out. LOVE (Chris)
For I can do everything through Christ, who gives me strength. Phil. 4:13 |
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MoiraWolf Posts: 3410
Senior Member
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Well, my logic goes like this... Joint swelling is an inflammatory response. Fibro is not inflammatory. Anti-inflammatories, whether NSAID or prescription steroid, doesn't do us any good at all. Aleve, Ibuprofen, etc, doesn't do a thing for us. UNLESS there's a co-morbid condition such as RA or Lupus. So that's my thinking. Fibro isn't inflammatory. Joint swelling is. Therefore, the joint swelling isn't Fibro. So, you need to see a rheumatologist and be tested for what's causing the inflammation. It could be anything from osteoarthritis (joint degeneration disease), RA, discoid Lupus, or some others. But yeah, definately get it checked out. *edit* darn typo gremlins! STill can't get them out of my keyboard! Post edited by: MoiraWolf, at: 06/05/2012 05:59 PM I am not a medical doctor and any medical opinion I give is based on personal experience and/or research. It is not intended to suppliment or replace your doctor. Follow at your own risk.
Gabapentin 600mg, tid
Tramadol 50mg, bid
Enalapril 10mg
Metoprolol ER 50mg
Citalopram 40mg
Levothyroid 125mcg
Cyclobenzaprine 10mg
Hydroxyzine 25mg
Carbidopa/Levadopa 25/100mg
Fish Oil Omega 3 - 1400mg
multi-vitamin pack
Vitamin C 500mg
Vitamin D3 50,000units, once a week
Dx: Fibromyalgia, chronic fatigue syndrome, obstructive sleep apnea, restless leg syndrome, degnerative joint disease, hypertension, diabetes type II, irritable bowel syndrome, plantar fasciitis, reactive airway disease, chronic allergies, hashimoto's disease, TMJ, morbid obesity, major depressive disorder, generalized anxiety disorder, post traumatic stress disorder, seasonal affective disorder
www.etsy.com/shop/moirawolf |
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hatbox121 Posts: 10501
Group Leader
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Swelling like that is not a part of fibro. Before anyone says "oh but I have this or that" you may experience some localized swelling if you have a "knot" etc in an area. Since it mainly occurs after exercise or any movements perhaps you should see another rheumy. One who is aware that you do NOT have to have a positive ANA or RF factor to have RA. Or a positive ANA to have any of the other forms of an autoimmune disease. There are things like seronegative RA, seronegative PsA, seronegative blah blah. Other forms of arthritis don't come with a positive ANA anyway. Other causes of joint swelling can range from a long list of issues. Some other ideas(and no I'm no dr so this is just personal knowledge of possibilities) are cardiovascular issues(venous insufficiency, hot weather makes it worse), vitamin deficiencies, kidney issues, etc. Most likely it's something like an arthritis, which is not good to have, but is managable for the most part with all the medications and such they have now. 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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AnJeL Posts: 16
Member
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Thank you all who've posted! Your input has helped settle my nerves MoiraWolf, Hatbox 121, and rwslove, and solidified my suspicions that this swelling is unrelated to my FMS. I now know how important it is for me to follow up with the Rheumatologist as planned. I do suspect Rheumatoid Arthritis starting. I'll keep you posted! I haven't posted for a few years but occasionally read posts by others. (Really loved the updated list of symptoms.) Thanks again to this wonderful group for always being here with learned advice and good back-up! Fibro-Hugs to all! :-D |
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hatbox121 Posts: 10501
Group Leader
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Oh and also, just to let you know, in various autoimmune disorders, you can have symptoms for years before ever showing a positive ANA. Also note that it can take up to four years after the damage has occurred for it to show up on an xray. NOT that I'm saying that you have any of those. That's just for your info. Hope you get to that rheumy soon and they are a good one!!! 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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Adewyn Posts: 4975
Group Leader
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and it also can be your medications.. please talk to your rheumy about all the possibilities... |
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AnJeL Posts: 16
Member
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I went to the rheumy and he's doing an experiment on me, basically. He's trying out 2 weeks of oral prednisone to see if my symptoms are alleviated, regardless of whether anything shows up in my bloodwork. We'll see! Hatbox121, that's exactly what I was afraid of, that autoimmune disorders may not be detected in the earlier stages through bloodwork. I have had other symptoms of autoimmune disorders, early full menopause at age 36 (I'm 40 now), low adrenal function tests that show up only half of the time, swollen and squishy thyroid, swollen salivary glands on and off for 3 years, etc., etc., etc., and now this joint swelling so suddenly. But because the bloodwork isn't consistently showing, for example, low thyroid function, the docs were all pretty much blowing it off until the bloodwork shows consistent signs on repeat labs. That is until now, with my rheumatologist at least trying out this experiment with the prednisone. I've been afraid that they would rely so heavily on labs and not on what they were seeing with their own eyes, that by the time they discovered an autoimmune disorder for certain, I'd be in REALLY bad shape! Too late to help it from destroying my body and relatively active life. Again, playing the waiting game. I will also remember to discuss my meds with him, Adewyn, on my f/u visit. Thanks again to everyone!!! Will keep u posted when the results are in. |
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hatbox121 Posts: 10501
Group Leader
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They've done that experiement on my daughter as well. It worked in her despite having negative ANAs and she was placed on an anti-TNF blocker and a DMARD based on symptoms and response to predinosone. The week after going on the new meds, she was back to her old self and has been very stable since then except for the time that we tried going off them. You might want to find the research on taking thyroid meds for those who are at a low normal and the benefits of that. There's been numerous papers done showing that those that are still within the lower end of the normal range still benefit from thyroid medications. As to the adreanal issues, I too have cortisol levels that go from low to normal to low to normal. I am wondering if they've ever tested you for Sjorgen's syndrome. There is a specific test beyond the ANA and CRPs. It is the SS-A and SS-B tests. Though I'm not sure if you meet the symptoms since you haven't mentioned dry eyes or the like. Another thing that you didn't mention is if you have been tested for lupus(SLE). That can cause early menopause as well as some of the other issues. I am not saying this is what you have, just somethings to get you to looking. Perhaps it's time to go see an endocronologist as opposed to a rheumatologist. You've mentioned several tests that were whacky that endocronologists deal with(adrenal tests, thyroid). Perhaps they could tell you something when the rheumy can't. 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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