I think I've developed MS.....

Thank you, Karen and I'm very sorry that you're in a flare up since December too :( I had no idea that these episodes lasted this long and I fear getting worse with summer here ( well it just arrived here in NJ ). Nighttime is the worst for me- it used to be, that I would take a zanax maybe once a week to get to sleep because of the pain- now its been almost nightly for the past two weeks. I cannot take pain medicine during the day because I have two children and I work part time, so I pretty much get through the day until my husband gets home from work- usually around 8pm. My part time job is also part physical too- I work for a specialty retailer and while part of my job is handling the office work, we get trucks in once a week and unhauling the freight is part of the job ( tomorrow morning we have one at 730- well i should say in 4 hours) and it's about 1100 pieces. I will be done for the next two days because while I am not in pain doing the work, its when I finish and sit down that every part of my body turns to cement :) I've looked into local support groups but there isn't one in my area ( odd ) and I don't have the energy to travel too far at night. That's why I came back to this forum- I have no one else to talk to because none of my family/friends knows how I feel. Hugs,

Faith

Faith,

glad we are able to share our thoughts on this site as well. When you physically look at us, we probably look pretty normal, it's what we are feeling inside that no one else can possibly understand. This site is my vice for getting through. I have a 9 year old son who is big time into baseball, and a full time job. I feel like I havent slept in months. The fatigue is probably one of the worst parts of the whole illness, because it tears you down in ways we can not describe.(not to mention makes us moody) wish you lived here, I was thinking of trying to start a supoort group here. Hang in there hon.

The same with me I will push my self in pain and do some things and when I sit down it feels like my legs have turned to concrete, wood whatever and I have pain just getting up from a chair.  So I better get it all done at once as I know once I sit I am finished for the day.  I work in accounting so I sit a lot my days at work are the most painful even if I take something.  My OB will only gove me 30 hydroco so I use them only when I have something important but they really don't relieve that much pain?

Thank you so much, Lene. I appreciate it and she did respond and I'm about to respond now. Right now I feel as if I'm battling a million little wars on different fronts and its frustrating as anything for me because of the lack of control that I have. Sometimes I even forget that I feel as horrible as I do because I consistently over-extend myself and then when I cant complete something, I'm angry at myself for failing- I guess I'm not allowing myself to be sick- I can take care of everyone else and help everyone else but when it comes to me and my needs, I am the last to ask for help.

Hugs,

Faith

I was nodding as I read your reply - I think we all recognize overextending ourselves and then having to spend days healing. I once took a pain management course that taught me if you work within your limits every day - i.e., do less than you are able - you create a situation in which you're able to do something every day instead of overextending itself and then having to lie on the couch for a week because you did too much.every now and again, I remember to work this way the crazy thing is that when I do less than I'm absolutely able to every day, I end up getting more done because I can do something everyday. It's a hard thing to learn and requires that you pay attention, are really good about setting boundaries around what you can and can't cannot do and become acquainted with telling other people that you can't help them or you can help them next week. It's hard, but worth it.

The issue of control is also one that many people with a chronic illness battle. When you have a chronic illness that's in control of how you feel and what you can therefore do, it's real easy to get depressed. When I feel like things are out of control, I often start with controlling the things that I can, like alphabetizing my CD collection or straightening up my desk. It reminds me that I am in control and helps me get over that hump. A little while ago, I wrote a post about this issue you can read that here.

Let us know what the neurologist says?

I have tried to do smaller amounts and with me it does not seem to make a diffrence I am in more pain the less I do.  Sitting behind a desk is misserable when I do have to get up.  So I prolong getting up and then I pay, but it hurts either way.  Till I get insurance or can find a way to get to a Rumy that will help that won't cost me a fortune I don't know what the answer is?

RA can sometimes coexist with fibromyalgia and the two live on completely different ends of the spectrum in terms of pain control. With RA, sitting still makes it hurt less, with fibromyalgia, sitting still makes you seize up. Check out the fibromyalgia area of our chronic pain site to see if anything seems familiar. If it does, try twitching. I have both RA and fibromyalgia and try not to do anything for more than 20-30 minutes at a time, then have a stretch, make a cup of tea, do something else for a bit. Added benefit is that it keeps your joints moving, as they can stiffen up when you stay too long in one position, as well.

As well, being in the kind of pain you described could indicate that your RA isn't controlled well. I'd recommend you make an appointment to see your rheumatologist to discuss whether you need to change your dose of medication or perhaps try something else.

Crap.  Sorry, I answered without checking the context, thinking you had a rheumatologist (I blame Monday morning).  I take back everything I said about fibromyalgia, because clearly, your RA isn't controlled and that's most likely why you're stiffening up. I live in Canada and am not that familiar with the US system, but I remember someone posting about how to get seen by rheumatologists even though you don't have insurance. I believe it has something to do with calling the health department - perhaps of the city you live in?  Do you have a family doctor? Or does the insurance question prevent you from seeing a GP, as well? If you can't see your family doctor, ask them how to access specialist care without insurance - it has to be possible.

Thank you for your email, every suggestion is appreciated.  I will look into it. I asked my OBGYN if he would prescribe Mtx and he said NO.  I get a dieretic and 30 Hydrco from him and he was giving me Celebrex but I chose not to use it because of the warnings.  So I take a Ibuprofen 1 2 times a day.  I honestly get I guess a litlle relief but not enough with the pain to notice a lot.  Sometimes my hands are a little better?  I have Osteo Arthritis and have had one knee replaced the swelling in my knees ankles and calves effect me the most with pain.  I guess I could ask for the Celebrex again but beforre knee surgery and post the Rumy saying HE THINKS I have RA due to symptoms as the blood work was negative, I had been on Celebrex for over two years, prior to surgery taking somes times per the doctor two a day, got the gel injections in my knees and had a awful reaction to it so I could barely walk for a couple of months, could have been the RA and at that time we did not know?

it's entirely possible it's been RA all the time.  It can be very tricky disease, hard to pin down, especially in the absence of a confirming blood test - when you're seronegative, you need a rheumatologists with lots of experience who is comfortable relying on the other symptoms and signs. If you reacted well to Celebrex, you may want to consider going back on it - ibuprofen is on the lower rungs of the ladder of pain control and it's no wonder you're not getting any relief. More importantly, if you do have RA, it's essential to get it treated as early as possible in order to decrease the amount of damage in your joints. Once your joints are damaged, it will affect your future level of mobility. Can you talk to your OB/GYN about how to get rheumatologist without insurance so you can get started on some treatment?

I left him a message to see what my alteratives are.  I am also worried as I was not that fond of my Rumy he would not let me talk and just handed out the drugs never really answered my questions.  I found a different one through this site close to me but then we lost our insurance?  Thank you for all your suggestions, gave me some hope that something can be done.  I appreciate it so very much.

sounds like this could be an excellent opportunity to switch rheumatologists!  Please keep me posted on how things go?

Thank you so much for responding, Lisa. I tried the methotrexate last year when I was first diagnosed and couldn't handle it. I took it on a Tuesday and from the day after through Friday I had consistent dry heaves so my doctor took me off of it and put me on the Arava, which really has never worked for me. Other than the initial injection of Humira, I haven't had any relief since last August. My pain varies from day to day but it's always there in some form and nighttime is when it gets the worst for me, so regrdless if my day is decent, I will feel something by the evening.

I reviewed the symptoms list and out of the 14 listed, I've been experiencing 11 of them pretty regularly for the past year. I've always had a problem with balance and falling but chalked it up to being clumsy. I never had the last one until I got sick- I feel so awful to even think about it and when I do, I have issues with my weight gain. I've had depression/anxiety on and off for the last 10 years or so, my vision has deteriorated for the past 20 years. I always thought I was so tired because I worked a lot of hours, couldn't fall asleep easily and then got married and had my son. I used to get that creepy/crawly feeling in my legs whenever I was low on potassium ( I assumed that was the reason) because I would eat a bannana or take potassium supplements and they would go away instantaneously. I don't get those types of feelings any more- now its a pain and its gotten to the point where I cannot sit for long periods of time and if I'm in class, I tend to sit in the back so I can easily get up and walk around without disturbing anyone. The mental problems- cognitive,memory, unable to focus, came on gradually and I thought it was ADHD ( it runs in my family big time) so I've been on adderall for the past year but it's gotten progressively worse. If I have a writing assignment for one off my classes, I can sit here at my laptop, with a wealth of information in my head and I'm unable to process it. I cannot get the words from my brain to the paper. This has been such a major blow for me because I've never had this problem- my memory has always been exceptional- I never needed an address book because I had the type of memory that could retain items. Now, someone can tell me something and I have to repeat it several times and still forget it within moments. I'm taking summer classes right now and I'm ridiculously behind in three of them because I can't keep up with the writing. I'm fortunate that I have professors who understand but its embarassing to have to admit to them.

I do have a timeline of all of my illnesses/issues going back the last ten years and I am bringing it with me to the doctor visit next week. I don't have anyone to go with me because it's early in the morning and the person whom I'd usually take ( my husband) will have to stay and watch our three year old son ( he is not waiting room friendly ;) ) but I do have my " notebook" that i bring with me to each doctor visit so I can write things down and take notes. I have copies of all of my blood work over the past two years as well- but strangely enough, my rheumy never ordered xrays or any other diagnostic testing on me other than blood tests. I know all doctors are different but I'm not sure if this is normal or not.

I will let ya'll know the outcome of my visit next Tuesday. It feels as if it is a month away because between now and then I have deadlines for school, work, the holiday weekend and I have to take my stepdaughter to the airport on Thursday so that she can fly down to Florida to be with her mom ( you have no idea how much I hate doing that......).

Oh I know stress is a major influence regarding our symptoms. My stress is never ending ( like most) and I don't even know how to decrease it to be honest. I will say that the onset of my problems, starting with the reoccurance of the EBV/Mono virus occured when the birth mom reappeared on the scene and dragged us through the court system. It's really never gotten better since then. Coincidence?

Hugs,

Faith

I get muscle spasms in my toes and calves mostly at night in my legs.  A lot of times the toes tighten up and it is so painful till it works it self out.  It is a little scary when I am baby sitting my grand children and my toes cramp up and I have to force my self to stand?  All of this gets very over whelming and scary.  Not having seen a doctor in over four months and no real RA meds does not help.  The Mtx I thought was not doing much till i was off it a few weeks and realized how much I was doing before that I am unable to do with out really terrible pain now.  I had some Enbrel that was given to me from some one that changed meds it was exactly what I was using but withour the mtx it did not seem to really give me any relief and of course it was only a months supply.  Can't even touch it without insurance?