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nzawyn Posts: 24
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Hi All, I generally lurk in the SLE(lupus) or RA boards, but for the past 3 weeks I have been dealing with a new symptom. I have been tender in the past...skin and muscles...okay, so now Everything hurts,beyond reason. My son touching my arm, the seat belt makes me cringe, clothes, the pressure of sitting, the shower spray hurts....this is ridiculous! My rheumy said this is my fibro rearing it's head and started me on Lyrica samples. I keep looking in the mirror expecting to be bruised all over...that's how it feels...and not just at fibro points...all over...like pulling yoga pants own to go to the bathroom. I know what it feels like to be hit by a car (because I had been hit by a car), but this is is crazy...where are the bruises?? Is this normal...I'm scared it is. Is this for always? I don't want to flinch from touch. Is there anything I can do to alter this course? Any meds...muscle relaxers? I have a Rx for one at night, but I have been taking them a couple of times a day mixed with hydrocodone to find a way of desensitizing myself. Is there a dosage that works well or a better med? Please anyone with opinions please share! I have been so busy dealing with the lupus issues, this is the first time fibro has had a major role in my life. Thank you in advance for your help and ideas. Cheers Awyn Be miserable. Be happy. Remain stagnant. Pursue change. Whatever happens, it's our choice. And that makes it a gift.
SLE, RA, Fibromyalgia
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hatbox121 Posts: 10502
Group Leader
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So I'm thinking that you have been dxed with FM. Right? Sounds like you may be having a flare of the FM. This sore skin symptom is a fairly common symptom. It does feel like bruises only there are none there. There's a technical name for it but I can't think of it. Flares last as long as they last. There doesn't seem to be a time frame for them. Keep taking your meds like you should. Try to get some better sleep, even if that means taking the muscle relaxers at night. If you have a high stress level right now, try to lower that the best way you can. Welcome to the group! 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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broken Posts: 9257
Group Leader
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when I joined the group I had typed in I think Im dying I need help..so your title hit home..to answer you question yes all that is possible with fibro.when people say there hair hurts I would laugh it off till now it does hurt how is that! clothes is one of my biggest issues. I would ask as I assume your doc has ran all the blood test to rule out other things.. I hop you know you are not alone we are here for you through it all we all have alot to give if one gets the help then some of this suffering is worth it..
remeber I am not a doctor I just say what I think |
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Superemt79 Posts: 47
Member
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hey there, No worries your not alone the process of me putting on my uniform is horrible. During a flare my boyfriend even has to help me put on my jacket because i'm to sore to reach around. I just found out i had fibro so i don't know much about it. But i hope what ever is ailing you gets better soon  Please note that I am not a doctor. If you belive you are in need of medical attention please do so. |
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faieriemama Posts: 3345
VIP Member
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Yeah it's probably fibro and no you're not going to die from it, although we have all felt like we were at one time or another. I get that "I hurt so bad I don't want to wear clothes" feeling frequently myself. That's when I go for the " Forever Lazy" fleece onesie my Dad-in-law got me. It's sooo very loose and comfy almost not like wearing anything. I found a cool website that lists pain symptomsof fibro in a way I can really relate too. It's not terribly scientific but I love the names they give them! LOL http://www.curemywife.com/blog/2012/types-of-fibromyalgia-
pain/.I I think that the discomfort of clothing sounds like Painful Paresthesia and how I relieve it is to wear soft loose clothing, take a warm shower, use unscented lotion. I hope you you find some relief whether it's from advice on here or from your doc and start to feel better soon. Hugs and Love. I'm not a medical professional, I can only offer advice,if you need medical attention please see a medical professional.
Don’t compare your path with anybody else’s.
Your path is unique to you.
— Baba Ram Das |
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Adewyn Posts: 4975
Group Leader
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I am on Lyrica 100mg 3 times a day and muscle relaxers at night.... i know the feeling of the bruises should be there but they arent feeling......hang in there.. alot of us have over lapping diseases... and it is not unusual for some one with ra lupus or ms and a few others disease to have Fibro on top of it all... hugs and love hang in there you arent dying |
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ChemGeek Posts: 42
New Member
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The first tip off to me that I might have fibro was the overall skin bruising sensation. No, you are not dieing but it can be quite terrifying! If I do not take my medication and/or get quality sleep, that sensation comes back to varying degrees. I take neurontin (gabapentin) 200mg in the morning, 300mg at night and 100mg at lunch time. That is a low dose, but I am quite sensitive to medication and weigh just under 100 lbs. I also take flexeril at night and as needed to relax muscles and 50mg tramadol as needed for pain. I have lidoderm patches for localized sensitivity. Hope you find something to alleviate that pain. It does sound like what I experience during a flare. HUGS! xo,
Mandy, 31 years young!
~*The greatest power in the universe is the power of decision*~
Dx breast cancer 12/2009
Dx myofascial pain syndrome 2/2011
Dx fibromyalgia 2/2012 |
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Fantod Posts: 501
Member
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The problem you are describing is called "Allydonia." It is a "perk" associated with Fibromyalgia (FMS). I have it myself. It can be very painful and extremely annoying. Mine comes and goes. Sometimes my sensitivity is barely noticeable and other days the prospect of wearing clothing is not appealing at all. You are not dying. You need to talk to the doctor about this issue. I don't recommend tinkering with your medication on your own. Some people have luck with a medication for nerve pain such as Gabapentin. Typically it takes time and a lot of messing about to find the right doseage and medication for each FMS patient. And, once you start something new don't expect instant results. It can take two weeks or longer before you notice any difference in your symptoms. Have you tried the three primary medications used to treat FMS? Cymbalta, Savella and Lyrica are all used to manage FMS. Only certain classes of prescribed medications are effective. OTC medication such as Tylenol or Aleve are typically not effective for the type of pain associated with FMS. I'd like to recommmend that you purchase a book called "Fibromyalgia for Dummies." Like all of the dummies series, it contains easy to understand information. It will give you a comprehensive overview of this nasty syndrome and how to manage it. You can find it online at Amazon. You are definitely not alone with this problem. I hope that my comments are helpful to you. Take care and God Bless. |
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girlfriend Posts: 1630
Senior Member
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Our wonderful world of fibro... I have this issue also but I did not know it had a name... thanks fantod Don't dread the storm, Learn to dance in the rain! |
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FibroCFS Posts: 1447
Senior Member
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You are in a bad flare. As impossible as it may be, somehow you have to get lots of rest. You are probably not sleeping well, not just because of the flare but because many with Fibro have sleep issues that can help push us into flares. I hope the Rx helps. I have tried them all and they do not help me. They have turned to more of working on my sleep with Gabapentin and Zolpidem (Ambien) and I have Tramadol for the pain which kind of works but not really. If I were in a bad flare the mg. I am on right now would not be doing anything. Tramadol 50mg AM Noon 6PM Fibromyalgia/Pain
Fludrocort .1mg AM & 6PM Hypotension
Zolpidem 5mg 6PM & 8PM RLS/Sleep
Gabapentin 300mg 6PM RLS/Sleep/Fibro
Gabapentin 100mg Upon 1st and 2nd Awakening at night RLS/Sleep/Fibro
Simvastatin 20mg 6PM Cholesterol
Tizanidine 4mg Upon 1st Awakening at night and 2mg AM and PM Fibro/Sleep
FemHrt (Hormones) PM Severe Hot Flashes
Voltaran Gel as needed on hands and rib cage.
Ibuprofen or Naproxen as needed for hands, arms, feet, legs, knees, rib cage, back.
D3 1,000IU & K2 90mcg - Sublingual
D3 Gel Caps 2,000IU AM 4,000IU PM
Calcium Citrate 2,000 2x day w/food
Manganese 10mg PM And Upon 1st, 2nd, 3rd Awakening At Night
Magnesium Taurate 400mg PM 1 Upon 1st Awakening at Night
Malic Acid 800mg AM/PM
Vitamin C 1,000mg 2x day
B1 Capsule 100mg AM/PM
Liquid Vitamin B Complex - Sublingual AM
Includes: B2 17mg, B3 20mg, B5 30mg, B6 2mg,
B12 1,000mcg, Folic Acid 40mcg
Benfotiamine 300mg PM
Chromium Picolinate AM
Bromelain and Broad Spectrum Enzymes before meals.
Cranbery Extract Capsule w/C 400mg
Omgega Fish Oil Capsule 1,000mg
I am not a doctor nor do I work in the medical field. My opinions and suggestions are just that, just what I think and have to offer that I hope is helpful to you. Always rely on your doctor when making medical decisions. |
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