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Found 15 results

  1. Management of Fatigue in Rheumatoid Arthritis. More research is needed to understand fatigue and how to treat this common complex symptom in RA that can be the worst symptom for some patients. PubMed, RMD Open, 2020 May;6(1). (Also see Symptoms and Complications of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Fatigue severity in anti-nuclear antibody-positive (ANA+) individuals does not correlate with pro-inflammatory cytokine levels or predict imminent progression to symptomatic disease. Fatigue is common in ANA+ individuals, correlates with fibromyalgia-related symptoms, and is not associated with inflammation or predictive of disease progression. PubMed, Arthritis Res Ther, 2019 Nov 4;21(1):223. (Also see Fatigue) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Factors of importance for reducing fatigue in persons with rheumatoid arthritis: a qualitative interview study. The participants in this study expressed that physical activity was important in handling fatigue, but also that this insight could only come from personal experience. PubMed, BMJ Open, 2019 May 29;9(5):e028719. (Also see Symptoms and Complications of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. Association of patterns of moderate–to–vigorous physical activity (MVPA) bouts with pain, physical fatigue and disease severity in women with fibromyalgia: the al–Ándalus project. The results suggest that longer bouts of continuous MVPA are associated with better symptoms profile in this population, which needs to be corroborated in longitudinal research. PubMed, Arch Phys Med Rehabil, 01/05/2019. (Also see Treatments for Fibromyalgia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Prevalence of fatigue and its association with clinical features in progressive and non–progressive forms of Multiple Sclerosis. Fatigue was more prevalent amongst participants with progressive MS and higher fatigue severity and impact were associated with greater physical, cognitive, and psychological impairment. PubMed, Mult Scler Relat Disord, 2019 Jan 3;28:276-282. (Also see Multiple Sclerosis and Fatigue) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. The Fatigue Assessment Scale (FAS): quality and availability in sarcoidosis and other diseases. The FAS has good psychometric qualities for the diseases in which it has been examined, including sarcoidosis, and can be used in clinical practice. PubMed, Curr Opin Pulm Med, 06/07/2018. (Also see Fatigue and Sarcoidosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. Hi Everyone, I am new here and not yet diagnosed but I feel like an expert in this disease as my mother died 20 years ago from Scleroderma with CREST and Primary Biliary Cirrhosis. For the last 3-4 years I have suffered with joint pain in my toes and fingers along with severe fatigue. I have many other issues and have been diagnosed with Fibromyalgia and Intracranial Hypertension; but that’s for a different forum! In October I was diagnosed with Raynaud’s and I have had GERD daily as well with it being as bad as bile rising up in my throat at night while I sleep. In December my doctor ran an ANA reflex which came back positive and reflexed to a positive Anti-Centromere B result. My primary care physician does not think I have Scleroderma as I do not have any skin involvement and he can bend my fingers easily. My fingers feel stiff and are painful and swollen everyday. I have requested him to refer me to UCSF Scleroderma clinic and they are reviewing my labs and X-rays and echocardiogram (which both were normal, I just have the abnormal labs) as well as my medical history. Every day feels like a living misery. Mornings are brutal and I barely have any energy to get ready for work. I tire so easily. After I get home from work, I change my clothes and get in bed. I also suffer from severe muscle pains in my upper legs and arms. It's a struggle everyday to do normal activities. I was just hoping to hear of anyone else who might be in the same boat I am? Yet I hope no one is! I am trying to be proactive with this as I don’t want to hear the same words my mom did, “You have about 2 years to live.” Any advice or anyone who wants to share their experiences with me, I would be most grateful! All the best, Tracy
  8. Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis (dcSSc): the European Scleroderma Observational Study. The European Scleroderma Observational Study highlights the burden of disability in early dcSSc, with high levels of disability and fatigue, associating with the degree of skin thickening (mRSS). PubMed, Rheumatology (Oxford), 11/30/2017. (Also see Diffuse Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. The treatment of fatigue by non–invasive brain stimulation (NIBS). Fatigue is a commonly observed symptom in the field of potentially treatable pathologies by NIBS, yet very little data has been published regarding its treatment. PubMed, Neurophysiol Clin, 2017 Apr;47(2):173-184. (Also see Fatigue) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. Fatigue in patients with systemic sclerosis (SSc) and hypothyroidism. A review of the literature and report of our experience. The results suggest that female SSc patients could be screened for thyroid function, overall in presence of fatigue symptoms, and that an appropriate L-thyroxine substitutive therapy could be useful to mitigate these symptoms. PubMed, Clin Exp Rheumatol, 04/04/2017. (Also see Fatigue and Thyroid Diseases) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. Hi there, Since starting Methotrexate 8 weeks ago my C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) levels have been rising. They are now doubled and CRP is now 85. My general practitioner and rheumatologist have both phoned me about it. I am having another blood test tomorrow and then rheumatologist will decide whether or not I stay on it. I was quite surprised when I heard how high it was as joint pain has eased a lot in the last month. I have developed a cough that I can't get rid of and my fatigue has increased. Has anyone else had a similar experience?
  12. Fatigue in systemic lupus erythematosus. Systemic lupus erythematosus (SLE) is a chronic inflammatory autoimmune disease often characterized by fatigue, with significant effects on physical functioning and wellbeing. Int J Clin Rheumtol. 2012 Apr 1;7(2):217-227. (Also see: Fatigue and Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Hello Everyone, I am 24, from Ohio, and have widespread plaque morphea, the start of linear morphea, lichen sclerosus, and a lot of joint pain and fatigue with hands being swollen frequently. I am a biology and sociology college student and physically active (despite the pain) who currently works in the medical field with aspirations to attend med school. Sorry for the length of this post, but I wanted to give you the full picture of my sclero-journey... This is my first post in the Sclero Forums despite my diagnosis about a year ago. I have found myself extremely frustrated in the last few days- as I have had so much widespread pain through my body, I feel like I can't do anything myself. I have been feeling this way most days for about 2 years now-which is what prompted me to finally see a doctor. Below is my story and some questions for those of you sharing frustrations who might have some advice and answers. I have widespread morphea, lichen sclerosus, and am wondering if I could be possibly have more? Since about the age of 7, I had this dark colored spot on the left side of my abdomen. It never bothered me, it was just there seemingly overnight. It's about 3 inches in diameter. I can remember my mom taking me to several doctors who told me it was just a birthmark. Then a few years later, I can remember it starting to itch and burn with bright red on the edges-it started to get bigger. At about age 19, I started to notice a few smaller spots popping up that looked similar to this one-under my armpit areas and along my pants line. After tanning, these spots would become a lot more pronounced (I am very fair skinned) and I decided to get them checked once more. Once again, several doctors assured me they were birthmarks or cafe au lait spots. Then about 2 years ago while in college, I just started to explode with more spots. The ones that I had started to grow in size, sometimes with pain. Aside from this, I was also battling debilitating fatigue, frequent illness, and widespread pain almost everyday for a year. (Pain so debilitating that simply laying in bed hurt and doing anything was just as bad. I also had bouts of 'creakyness', where my body cracked and made popping noises with any movement-my joints and bones feel rickety and creaky.) I started to not go to class, my grades fell. I felt as if my body was falling apart and there was nothing I could do. I went from being a highly motivated pre-med student to not being able to leave my bed most days and feeling guilty because I just physically could not keep up. I finally decided to go out on a limb and see a specialist dermatologist, because while all this was going on, I was continuing to get more spots. I finally got my diagnosis of morphea. My doctor did not elaborate and all he said was "you have scleroderma, you can look it up online," and sent me home with a script for prednisone.(which helped with the pain and exhaustion but came with its own horrific side effects.) Needless to say, when I went home, the information I was bombarded with online was scary and horrific because he had not distingushed between local and systemic. I made an appointment with a rhematologist/immunologist at the Cleveland clinic. The Cleveland Clinic doctor was wonderful and cleared up a lot of misunderstandings for me. My ANA tests came back negative for systemic sclerosis, but I did find that I also had morphea and lichen sclerosus overlap and a vitamin D deficiency so low it was almost untraceable (less than 10); which we decided could be the trigger of my pain. We discussed treatment options because my morphea was in a very active phase and seemed to be going through several phases of reactivation. -Now- Although my pain on the whole is a lot better (most days are good days), I still do have very rough days. My vitamin D has come up to an acceptable level after being put on 50,000 units 2x a week for 6 months. My spots have gotten a lot worse. I now can count 4 spots that are larger than 5 inches in diameter. They start from the front of my abdomen and wrap around my side and back, with1 spot which is almost 10 inches wide, as well as 6 that encircle my breasts, and several more along my trunk and opposite side which are also expanding. My spots are indented, hard, and painful. Sometimes they itch but lately the pain in my chest from my spots have been making me feel like I'm having a heart attack. A few weeks ago I also noticed a discoloration and spotty pattern coming down the backside of my left arm and down my bicep on the right. I am not 100% sure that this is the morphea, but it hasn't gone away and only gotten darker, so I am venturing a guess that it could be linear progression of my spots. My lichen sclerosus (which I have on my body as well as genitals) has also flared and I have been working with my OB/GYN (obstetrician/gynecologist) to treat it. I also have about 7 lipomas inside my abdomen which I can feel under my skin (the doctor told me they are nothing to worry about). Lately, I have been starting to feel creaky, achy, and in pain a lot more. I have also noticed my hands hurting. They are frequently stiff and swollen and puffy from the finger tips to my wrists. I wake up with them swollen and sometimes they spontaneously do it. I do not have Raynaud's (no color change or response to cold) but I do have some Sjogren's issues (dry mouth, dry eyes). It seems that things are getting worse, despite my creams, steroids, and light therapy. The next step is methotrexate and I am not sure if I can handle it in my last year of school. Questions I am wondering if I am 'progressing.' I understand that morphea does not 'turn into' systemic, however I do understand that systemic is variable between people and diagnosis is not cut and dry. I have a couple questions that maybe people can lead an ear to from personal experience or knowing someone else: Does anyone have both systemic sclero AND morphea? Can they be presented the same time? What is early systemic like? How does it manifest? At what age and how did you know it was getting worse? Has anyone else had issues with their hands swelling and hurting randomly? Or widespread pain? Is it possible to have both Morphea and Linear Scleroderma? Thanks to everyone for your advice and support! I look forward to hearing from you and browsing the forums. Stay strong and thank you! :D
  14. :spoon: Okay, so who stole my spoons? :spoon: I have been doing really well, have been alternating fairly active periods with times of taking it easy and pacing myself but today I ran out of spoons, could barely drag myself out of the car and onto the couch where I laid like a dead weight for several hours. I was just done. For those of you newbies who might be wondering what I am talking about here is a link to "The Spoon Theory" that wonderfully explains the fatigue that comes with an autoimmune disease. I plan on stealing them back by the way so if you have them, watch out! miocean
  15. Hello one and all, I have just joined the Scleroderma Society, and this is the first time I have ever posted on one of these forums. My mum is 77 years old and has had a diagnosis of Raynauds syndrome for more than 10 years with a later diagnosis of scleroderma and hypothyroidism. I am very worried about her situation as she is suffering with depression, is extremely frail but is unwilling to see her general practitioner. My father is her sole carer. She suffers with problems swallowing, has diarrhoea at intervals, and lower and upper limb pain – she takes pain medication for pain relief which she says is the only thing that helps. She eats only small amounts and I’m convinced she is malnourished. How much this is a part of her other problems I’m not sure. She suffers with fatigue and weakness. On previous occasions she has been out and has reached a point of near collapse, but when paramedics examined her, they could find nothing wrong. At the moment she no longer goes outside the house except when the weather is warm and occasionally my father uses a wheelchair for her. She struggles to get going in the mornings, saying she feels “woolly round the edges”, and struggling to understand things - her memory is very poor. She has been referred to a rheumatologist in the past, but did not continue to see them, and has “lost faith in the health service” as they seem unable to help her. Her general practitioner told her that she just had to live with the scleroderma. He continues to do blood tests to monitor the thyroid levels but cannot help with the weakness, the problems eating, the pain she has in her limbs and the general fatigue. So I guess what I’m asking is, what can I do to support someone who is clearly depressed and feels life has nothing more to offer them? Any feedback would be very much appreciated, even so that I can tell her that she’s not alone, and there are people who have similar symptoms. I get the feeling that each person’s experience of scleroderma is very different and that no two cases are the same. Best wishes to everyone and a happy new year for 2012 Helen
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