If I may ask without seeming nosey-
What were the symptoms leading to your diagnosis?
How long did your diagnosis take?
How have you been treated (what meds/therapies) and what has worked best?
I am being tested for a number of things but my own experience and background leads me to suspect RA will be the ultimate diagnosis. The doctors I have seen also seem to be leaning that way.
Chronic, almost unbearable fatigue, weakness, intense joint pain in almost every joint, it's worst in my extremities especially feet and ankles-several times recently I have had an ankle just 'give' while walking - three times now that has been while carrying a baby down my stairs and once while in a store, again while carrying my little one, which is frightening not to mention a bit embarrassing. I went for a walk the other day and suddenly felt as if my foot were broken, like if I took one more step weight-bearing on that foot the bone would just snap. I limped home and put heat on it, and rested it for the evening and overnight, and by morning it was back to it's regular state of 'just' sore. I'm pretty young and in pretty good shape- actually *very* good shape when having two children within two years is factored in; I have been fairly athletic in the past, and all of this is a bit out of the blue- it seemed to start gradually during my last pregnancy and I thought it was from carrynig extra weight of baby and fluid, but it's been almost three months since the new little guy was born and it is only getting worse even though the weight and fluid are long gone. I went to the Dr. hoping to be told it was normal considering I have two very young children in addition to school-age kids but also knowing it was not the normal fatigue of mommy-life. I have to get up at least an hour before anyone else and take medication before my kids are up in order to just be mobile enough to make them breakfast and get the day going. The pain tends to get better as the day goes on but as the day goes on the fatigue gets worse, so it's a bit of a nasty cycle going here. Sound anything like what you've experienced? What has helped?
Wow I don't want that to sound like I'm whining; I'm not neccesarily complaining, just curious. Okay guys, I'm starting to think this is a 'Jewish thing', LOL! (((Mz Rahi))) I'm so sorry to hear that you're going through all of this. I know how hard it is, although mine came on early enough that I've not gotten to have a family.
I show all the signs of RA, except for the bloodwork, and have since I was 20. I also have extreme fatigue, weakness, joint pain (the *only* joints that have never bothered me are in my spine). I also have a lot of problems with inflammation of the just about everything, including my brain, which can be quite debilitating and frightening.
And I know about the knees/ankles just giving way. To me, it feels like someone rammed a knitting needle directly into my joint. It's usually so sharp that I cry out and I have to wait until it lessens before I can hobble home. It pretty much only happens outside, and seems to be connected with ozone from outdoor pollutants AND indoor computer/ printer/ machinery emissions.
One of the root causes is that my body has problems breaking down synthetic chemicals and pollutants, so they build up in my system and cause all sorts of problems. What's helped me most is reducing as much of those sorts of things as I can, including switching to 'safer' shampoo, soap, laundry detergent and cleaning products. Eating organic as much as I can makes a huge difference. Nutritional supplements sometimes help, as long as they're good quality, EFAs are the most important ones re the arthritis.
I hope that all makes sense, I'm really worn out from the week and it's hard for me to concentrate. E-mail me if you have any questions at all or just want some support from someone who understands. Does it run in your family? Maybe not the entire fatigue thing nor exactly what you have, but does someone have arthritis in their hands? Even fibramyalgia is considered an autoimmune disorder. All those grumpy grandmas that we though were lying about their "hair hurting" we now realize that they probably had fibramyalgia.
What about diagnosis of an autoimmune disorder or disease (in a family member) late in life? My mom was diagnosed with type 1 diabetes at age 52 yo. That's a sure sign that the body is "attacking" iteself, a sign of having an autoimmune disorder.
As for me, autoimmune disorders run in my family. My sister was diagnosed with juvenile arthritis at the age of 12 after an injury playing basketball. The fact that you used to be quite athletic doesn't always play in your favor IF your family has a history of autoimmune disorders. After my stroke in 2004, doctors finally put 2 and 2 together and did some DNA testing because it was obvious that autoimmune disorders run in my family. You don't need genetic testing, but look to your family and ask about any health problems, you might be surprised. Autoimmue Illnesses are hard for modern medicine to nail down. Some will show clearly early on, other times they'll be vague for a number of years before a distinctive symptom makes it clear.
Often the way to start is guessing, trying treatments that seem on a gut level to be good ideas, then narrowing down that way. The beginning stages are the most scary, with all the vagueness, newness, & first learning the patterns & how to adjust behavior/manage for them. It gets better. Sometimes things do clear up too -- so it's good to keep hope & not get totally down about the future.
AI do sometimes trigger from the hormone changes of pregnancy. I had sudden onset CFS with FM elements post-virally. I was diagnosed quickly, but it took a year to get any effective treatment (which I figured out for myself & later learned Hopkins was suggesting). I've continued to improve but. What you're describing doesn't match CFS completely (www.cfids.org is the main organization) but maybe FM? Both hit worse at first & improve as you find things.
User groups, learning about them yourself, & using your brains (which I know you have :) ) makes a big difference. For alternative treatments, they can work. It's tricky to separate ALL the shaft from the wheat. Don't ever feel pressured into anything even by the sales pitch. Medhelp has user forums that can be useful.
Keep us updated, & don't feel like your whining. Better to vent here, than keep it inside. This is tough stuff. Don't discount how much you're accomplishing simply by dealing with it.
For Yom Kippur, be careful. Can you eat light instead of fasting? I took three days to feel all right last year, so I'm doing it differently this year. Rice cakes seem like an untasteful food, so I'm going to use them.
I have food sensitivies that working around work (good part -- it's hard to mistakenly mix dairy & meat when you're allergic to one!) I have some mild chem sensitivity -- but more major to car chems, so it's become a problem (hence my learning to fix my own ancient car myself). DON'T underestimate the value of pacing yourself, taking rest breaks. ...Setting up your environment to make things easier (first thing I did was graphite every knob in my house so they were easy to turn including the kitchen sink). ...Adding pleasant things into your world to counteract any down times, artwork or creative way to vent. ...thanking your husband a lot any time he's supportive (even if your embarrassed to)
I wish I could take this away for you, but if I can be of support let me know.
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It's just that we'd notice your question through the contact links :). I found not many Jewish folks at the support groups. I''m in a high Jewish population area -- there should have been more.
Just to cover all bases, for Sephardic Jews there is Gauches (or Guaches) Disease, which includes fatigue & bone pain & is treatable. It's genetically testable. It's low probablity, but worth a mention. (Google for the main sponsoring organization.) Remember the nature has not given you a most advance body system to cry with pains. Your body has all the auto correction facilities for its smooth operation. A part of you brain is constantly working to protect and repair your each body cell without your notice. It only creates pain to let you know that things are getting out of its control and needs your urgent attention. Sometimes your are required to do some minor corrections in your living style to lead a pleasant life. I have a family history of RA. When I was 25 I had my first bout of symptoms that match yours identically, fatigue and sever joint pain and stiffness. I remembered that arthritis has been associated with intolerance to nightshades. After eliminating ALL nightshades from my diet my symptoms disappeared. I still have bouts of symptoms just like yours. Afterward I always find out that there was some small trace of a nightshade in my food. Nightshades by the way are tomatoes, potatoes, eggplant and peppers. Black peeper is not in the same family. It takes 3-5 days to get all of it out of your system. I strongly suggest you try it. If you are fasting during the holidays I would add a few extra days to it. Sometimes fasting can cause additional joint inflammation when inflammation is already present. Even small amounts like seasoning on a hamburger can effect you. Be very careful because potato flour is a very common ingredient in Kosher food. I thought I was going to die one year after eating matzoh ball soup! Grandmas secret recipe included potato flour. It it helps you email me and I will send you the supplements that I am taking. BTW most of the doctors that I have spoken to don't know anything about it but its common knowledge in alternative medicine.
L'shana tova i understand what you mean i have a extremely severe form of gout (a form of arthritis) with uric acid kidney stones.i tripped one day and had a similar attack severe pain and the other systems. It took a long time to discover what was wrong because the doctors fought i had the pain from the fall which was not true. It took a long time to get the correct medications that agreed with with me but now i am much better. I met have met so many people with a similiar story Hon,also so sorry you're having these dehabilitating symptoms.Plus nearly falling when carrying your baby rather frightening as well..Thank G-D nothing worse happened..
I do have both fibromyalgia & m.e/cfs,the latter being an autoimmune disorder.The symptoms of both are very similiar aside from sometimes having cognitive disfunction.We laughingly call 'brain fog'.Talk about embarrasment LoL So really can relate to all your symptoms..
That said,the beginning of RA includes the chronic fatigue,pain,stiffness in the morning for appx 30 minutes & all that you mentioned.Yet,by itself doesn't mean you definately have RA..
The best type of Dr for RA,any autoimmune disorder is a Rheumatologist.There's various tests such as the PCR (reactive protein) CPR,a blood test which when less than 50 is usually considered normal.But not always conclusive by itself...
There's many different meds for RA,to name a few,Humira,Methotrexate,Embrel injections,Celebrex for pain,ie..Most of us with autoimmune disorders do have MCSD's/multiple chemical sensitivity disorders so what may work for one doesn't work for all..If you have RA you're Dr will treat you correctly..
When I have stiffness &/or coordination problems I find it safer to walk by a wall to hang on in case I might fall.Sounds silly but mainly has worked for me..For stiffness pain I alternate between using hot then cold packs.For the chronic fatigue,only will-power & determination :-) That sees me through all the limitations of these illnesses..And you can do the same hon!
There's a fantastic support board on WebMd for every illness imaginable.Lots of great info as well.Suggest you check out the Arthritis board OK..Feel free to email me at anytime..
Will give you an informative link on RA in a sec but first want to wish you L'shana tova & may G-D bless you & yours for a healthy sweet New Years..
http://www.mayoclinic.com/health/rheumat...
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