Anyone have any ideas on what this might be or potential solutions?
Ongoing with gradual worsening over 30 years. Muscle pain and stiffness. Losing muscle strength even with working out and aqua therapy. I was an active horsewoman so was very fit.
Intermittent rashes chest and upper back. Dry, itchy patches on elbow, knee and forehead. Intermittent non-stationary ligament and joint pain. Sometimes a knee or a shoulder, or where the front of my thigh meets my pelvis or finger or hand swelling with sharp broken bone type pain. To the point I cannot bend the joint. Swelling is obvious to naked eye. Some days I lift my arm over my head and others can hear an audible snap with a sharp pain in my shoulder or I start to take a step forward and my leg joint feels like someone is stabbing it.
Rarely lymph node under right arm pain. Long term cough. Palms of hands will turn bright red and itch. Sometimes my face or the fronts of my thighs turn bright red also.
ANA 1:80 high abnormal
High Complement C3
Thyroid tests normal although sometimes throat there occasionally has swelling and pain.
Lymes tests all negative.
I was treated years ago with IV Colchicine and Myers cocktail. Within 3 days muscle pain and stiffness was completely gone. Went for 6 treatments. Seemed to be ok for a couple years gradually symptoms returned. FDA took IV colchicine off the available treatment list now so I cannot try again.
rheumatology Jefferson was clueless, worse she had zero curiosity and a I don't give a damn attitude. Said I don't have an auto immune. John's Hopkins head of rheumatology years ago said I have some unknown auto-immune disease but he didn't know which one. All he did was put me on prednisone which caused 100 pound weight gain and I felt miserable all the time. Wanted me to join his 'research study'.
I did get the weight back off.
Anyone have any clue or similar symptoms?
Tried low dose naltrexone. Made me dizzy with bad headaches.
Allergic to all NSAI's
Refuse to take any narcotics now. Tried that for almost 5 years. Not much in the way of pain relief for me so I quit taking. Doc looked shocked when I said oh that doesn't work so I quit taking it. Luckily I somehow dodged the addicted bullet.
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Did you get Covid and or the vaccines before all this? Just curious. Also, when doctors (I am in the profession) cannot explain, they recoil and tell you it’s in your head or that it is not “that”. Physician roles are shifting monumentally. Many lay persons know more than their doctors do thanks to the internet. But it can also be a confusing and sometimes dangerous place. There is also a rise in Functional Medical Clinics (East meets West) and alternative therapies, heat, sound, colour, cold water, magnetic and light for example. While AI is in question, I do believe it will be of huge benefit (already is) to the medical profession and finding better health. Most of our immune system resides in our gut. The ANS/Vagus nerve is also a place to seek understanding. Do your research. There is some excellent information out there and peer reviewed articles. I have listened to one doctor (and I have always believed this to be true) that a BP of 120/80 is what all should strive for. We are all different and as we age, our bodies shift. Our bodies constantly shed cells at different rates. Pre existing conditions can be triggered by a sundry of influences. Many people find better health through diet alone but lifestyle is an imperative as well, especially where one is stress. Cortisol is yet another aspect of our health; our stress hormone. It’s a lot to learn in a short period of time. Many are taking health into their own hands being frustrated with the current state of the health care system. It can be overwhelming. I will end with saying I have heard so many stories of a drastic change in diet making a huge difference. Makes sense because of all that is being understood by processed and fast food. Colon cancers are on the rise in younger folks.
I wish you the best in finding your path to wellness.
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2 ReactionsPs
Not completing my thought process re: blood pressure, it is not always true that a slightly higher BP is a bad thing and needs to be treated. Certainly discuss with your doctor because of stroke/heart complications that accompany high blood pressure.
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1 Reaction@jimgill this bit is exactly the symptoms I have. I have palindromic rheumatoid arthritis.
I also had the muscle weakness, tiredness, but no rash and I'm serum positive for inflammatory arthritis with an anti CCP indicating RA. .
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2 ReactionsThank you for your honesty!
I certainly know more than my doctors. One rheumatologist told me nose bleeds aren't a symptom of cutaneous vasculitis when they certainly are.
Another I told I was taking MSM. Now, not only is MSM tried and tested and proven against RA, the mechanism by which it works in causing bad mitochondria to be got rid of is well documented. He said "what's MSM?"
I'm also taking pure curcumin, liquorice root and cats claw, all tried and clinical tested against RA.
I've had one 24 hour flare in one joint in 5 months and all my symptoms of cutaneous vasculitis have disappeared.
Yet I'm still feeling as if medics are trying to push me into suppressing my immune system with methotrexate "because that's our standard drug treatment for RA."
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4 ReactionsI’m all for researching different ways of finding better health and in some cases, a complete absence of symptoms. Keep on your path. The expression don’t throw the baby out with the bathwater comes to mind. I know too well the ravages of being on prednisone for a lengthy time and the side effects. Weighing it all out re: risk/benefit is a crucial part to consider. There is so much more we can avail ourselves of. If considering some alternatives, go on trust pilot. One can find unbiased reviews from “real” folks that have benefitted from many alternative therapies. Best wishes to you.
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3 Reactions@pattiobrien111 I can actually find online, god bless the Internet, actual clinical research papers specifically for RA for the four "alternative" remedies I'm taking. I had a second rheumatologist say they know MSM works but they are unable to prescribe it because there is no information on the safe or correct dose.
I'm so pleased to see this research being done now, though. People with RA in South America don't take cats claw for fun!
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4 ReactionsYes….God Bless the internet but be vigilant in your research and know thyself.
Be safe in finding your path to wellness.
No indeed, folks do take cats claw for fun.
Happy New Year All!
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2 ReactionsTY for sharing. I am experiencing very similar groin, upper leg and thigh pain. I do have Hashimoto's but this is??? I can visually see the swelling of what I believe are the ligaments. Ice pack alt with heat and gone. Only to return with walking or PT repetitions of exercises designed to strengthen the surrounding muscles. Take various vitamins, herbs and use NSAIDs for inflammation. Onto my 3rd Rheumatologist this month. I had many tests to R/O the most culpable diseases. So far negative. Just haven't hit the Jackpot. of course when they're out of ideas, Fibromyalgia is the goto Dx. It's a constant struggle physically and mentally. I do feel that the Creatine helps. I also belong to a Spa and indulge in regular Red Light and PEMFs treatments. Feel wonderful. Not a cure but helps me cope. I'm going to find and enlist the help of a Functional Practitioner. Conventional medicine doesn't offer much, both in actual problem-solving interest or treatments beyond Rx. Staying Positive
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2 ReactionsDoes sound a lot like psoriatic arthritis, but regardless of a diagnosis—your immune system is reacting to some stress , whether you have an underlying disease or not. Are you keeping a symptom journal: where, when, how bad. Time of day, time of year, activity, rest, what triggers or alleviates?
Meanwhile, lifestyle management: food is #1, start an elimination diet. Consider your environment: mold, chemicals, etc, & emotional stress. These 2 moves, journal & lifestyle, will provide you & your next doc with a clearer picture of your issues, give you a degree of control & hopefully help your symptoms without a bunch of speculative meds. Hang in there
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2 ReactionsHave you had any type of food testing done? I would definitely go to a Dermatologist and request for any testing-skin testing they can do. I have had that done before with rashes I have had on my body and it was helpful. I found out I am allergic to fragrances, however it mostly affects me in my scalp-when I use shampoo and conditioner that has fragrance in it. I have special shampoo and medicine for it.
I do know foods can cause rashes and itching if there is an intolerance or allergy. 2 types of food testing, I would highly recommend you get both of them. 1st type is the traditiona allergy Dr. testing-the prick kind on your back or arm. Request for food testing and they can do it for you. 2nd kind is non-traditional from an alternative type Dr.- Functional Medicine Dr. and this is lab/blood work- a lot of it, request for food testing. You will get different results from the allergy Dr. prick testing. You need both as they are both helpful and you get 2 different results. Like with the allergy Dr. testing, I have sensitivity with berries and citrus. Eating 1 orange is fine or small bowl of berries is fine. Having a large glass of orange juice, my tongue swelled up and was stinging and burning and my lips swelled too. With the functional medicine Dr. /alternative Dr-bloodwork testing- I am intolerant to wheat/gluten, dairy and eggs- none of these showed up on the allergy Dr.'s testing. All the foods are correct on both testings. If you haven't seen a Functional Medicine Dr. I would highly recommend you do so. Yes, it is pricey, but the Dr's are so worth all the money and time spent there. The Dr's spend way more time with you and see if you have mineral deficiencies/vitamin deficiencies and what else is going with you. Insurance does pay some on the Dr visit, however don't expect them to pay all of the visit or all of the labs/bloodwork. There is out of pocket expenses when you see an alternative Dr. I feel so much better after going gluten free/wheat free and dairy free/egg free. The Dermatologist can check for allergy to paints or different types of chemicals. Have you tried switching your laundry soap or bath soap to something more milder or something that has less chemicals in it? I hope your situation improves and you get to the root cause of your skin issues.
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