How do you deal with this? | Arthritis Information

So I'm still waiting for my first appointment with a rheumatologist. It's July 3rd. My PCP has indicated an unwillingness to prescribe anything. I had relief for about a week after a prednisone burst for an asthma flare but otherwise, all I have is ibuprofen.

Woke up this morning and I cannot bend my wrists. One wrist is so swollen that my fingers kept going numb and waking me up all night. And my knee barely bends. I've been off 40mg of prednisone for two days.

I have WORK to do tomorrow. I can't even go out on FMLA until I get someone to fill out the paperwork, and I doubt the PCP will ... she wants me to be seen by a rheumatologist. It's over a month away before I can even TALK to anyone and I have no idea if they'll be willing to actually diagnose me (so I can take some FMLA or something) ...

I'm terrified I'm going to lose my job. I've already miss three days in the last week and I'm only allowed five without being approved for FMLA. FMLA requires a diagnosis and I don't have one yet.

I hurt so bad I can't breathe. If nobody will prescribe me anything but ibuprofen (which Is Not Helping) how the hell can I work? I can't afford to keep going to urgent care (which costs several hundred a visit until I meet my deductible), and anyway, the last time I went they just gave me a shot of toradol (and I was in so much pain my blood pressure was fifty points higher than normal, enough that the doc wanted me to be evaluated for high blood pressure!). Which didn't do anything practical. And then he sent me away with a script for ibuprofen.

I don't want narcotics. The make me puke. But ... geeze, I just wish I could get a diagnosis and start trying meds, and get the paperwork started for FMLA. I have no idea how I'm going to manage work tomorrow, and I CANNOT lose this job. Then I lose my insurance and I'm just up a creek.

And I hurt. It just HURTS.
Ask your PCP to call the rheumatologist's office and tell them you need to be seen ASAP. Call the rheumatologist's office and ask to be on the cancellation list, explain your situation and tell them you need to come in ASAP.

This worked for me.

So sorry you are in pain and troubled. I know the feeling. Keep complaining to the doctors-

they work for you. There is no reason to suffer.

Can you show someone at work the swelling and explain what you are going through? I was lucky that my boss was very understanding. There was a week during my onset that I went to work very nearly in my PJ's- there was no mistaking how sick I was. So when I went out on a 2 month medical leave no one blinked an eye.

wanttobeRAfree2008-05-26 07:59:03

Cygnet, I'm so sorry you're stuck in limbo-land and suffering so much. It is possible to call the RD's office and explain your situation to see if they have any earlier appointments they could squeeze you into? Or get on their "cancellation list" so that if someone cancels you can take their appointment? Are there any other RD's available in the area that could see you sooner? Would your GP give you another pred pack? What about a different GP? I would think they could at least give you a prescription NSAID without seeing the rheumy.

As for the job, do you have any vacation time coming to you? The only other suggestion I can make, which is not for everyone, is to explain things to your boss, and hopefully they will be more understanding if you have to be out.

If all else fails, try something over the counter besides ibuprofen. Sometimes if one NSAID doesn't help, another might, like Aleve or an analgesic like Tylenol.

Hang in there!

InnerGlow2008-05-26 08:00:18

First, let me say I know what you are going through. It took about two months before I got in to see my rheumatologist. Luckily, though, I had been working at the same place for 23 years at the time, so my boss knew me being out sick that much wasn't normal. Could you talk to your boss and present your problem, just as you did to us? Maybe he/she will understand.

Pesonally, if my PCP refused to help me during a time when I needed some help, I'd dump them, especially since there are a number of anti-inflammatories and maybe a different one would be better.

You could go back to the ER and ask the doctor there if they could give you some prednisone until your Rheumy appointment. Did the ER doctor run any blood tests?

The urgent care doc ran blood tests, which apparently showed highly elevated levels of RA factor.

I work for a large health care company that has very inflexible attendance policies. My boss can't do anything; everyone's kept to the same standard. I've been there 11 years.

Also, my coworkers seem to think I'm slacking off, and I've had comments made to me to the effect of, if I've been there that long, I should be doing a better job. My work performance has really suffered over the last few months. (At least I have an explanation for the brain fog I've had.)

I'm not even sure with a diagnosis of rheumatoid they won't try to fight the FMLA -- they recently made a woman who'd shattered her kneecap return to work before she could drive, just a few days after surgery, and she lived 40 miles away.

How ironic- a healthcare company who wants employees to jeapordize their health by working while they are ill.

This country is in big trouble.

Stinko co-worker's-they should walk a day in your shoes and shut their big mouths afterward!

How much IUB are you taking at once? You can take up to 800mg(4 otc pills) at once. Motrin or Aleve might work better....just make sure you have food in your stomach.

I'd think it's best to be flaring big time when you have that first appointment.

Call your PCP and explain the situation. My PCP called and asked the rheumy what meds and dose he could put me on to help control the inflammation and the pain while I waited for my appointment. Well, even if you could get to see a doctor now, the chances are that it will take some time to get you comfortable enough to work. Do the very best you can. It also sounds like your PCP is a jerk. He should give you some pain medicine like Relafen that would be able to hold your inflammation down to a tolerable level. Ask! Short of that get some OTC Naproxen. (It's brand name is Aleve) If it doesn't upset your stomach-take it with food, you can take up to 1500mg daily. See how you tolerate it first. Ask your doctor or pharmacist about using it if have any questions. Oh my, I am so sorry you are in so much pain and in RA limbo.

THis brings back a memory! I can remember having my bumps on my hands and nobody knew what they were. I went to several PCP....nothing, couldn;t dx, wouldn't help with the pain, said they had never seen them before and sent me on my way.

So one day I was driving past a hand surgeon's office and thought, what the heck. I turned around and went onto the office and told the receptionist that I know she thinks I must be crazy but can I make an appt. with the hand surgeon to see if he knows what these are or at least talk to him about removing them.

The hand surgeon happened to be walking into the reception area at the time and I introduced myself and the receptionist asked him to look at my hands and he said to come right back to a room. It was my lucky day.I believe I was in surgery within a month. Too many years ago cannot quite remember.

Long story short he rerouted the tendons on myright hand, fixed the damage on both hands and in 4 years I had all 5 of my hand surgeries and he made the appt. with the RD for me.He initially dx me.

SOemtimes you just have to walk in an office and take the chance. I was in so much pain I didn;t care if they thought I was nutzo or not and it was a good thing I did just that cause the damage that had already occurred was irreversible and I live with it today.

Maybe just going in and stating what the prob is you can get in earlier. It is worth a try. The very worst they can say is no.

((((((((((((((((((cygnet))))))))))))

I'm really sorry you're in soo much pain.. I've found Aleve better then ib...

I would get another dr as soon as possible!!

Are you in the Uk or states?

You just need to make an emergency appt.at the Rhem. asap.. and force them to see you! Plus get another reg dr..grrr at the way he/ she is treating you!!

Plus, its ridiculous that you're not being givin Major pain meds..

Sleep is also a great way to escape, get away from the pain,

try some Nightquill, (until you can get some valium or vicodin , other pain meds).

also find out what works best for you

heat or cold... for me its heat.. I remember when i first got digasnosed, before that Rhem appt.. I was running hot water over my hands, just to get them to thaw out..

do you have an electric blanket?

The reason, I asked about Uk, is the terms unfamiliar w/ and sounds like the UK doctoring... long waits.. to get in..

I would talk to your manager/ supervisor, whoever you get along w/ most and would be the more understanding..

bc when you push yourself, its just going to make things worse and you need TIME OFF!! asap..

hugs soo sorry you're going thru this... i remember that kind of first pain, no meds..

You need a sick day off and I just don't see how they can fire you.. are you good w/ tears.. let them see how much pain you're in, if you can.. esp if your hands are all swollen, etc..

Sometimes people need visual aids,...

hugs, take care of yourself

ps: I agree w/ jode, find a Rhem dr and just walk in.. and tell them you're in too much pain, to leave..... find someone sympathic on the staff, .. don't give up!

Whispered2008-05-26 11:01:23I would call and get into your PCP. Let him see how swollen everything is. I am assuming that things have gotten worse since he saw you last. He should be able to call the RD and ask what to do.

Sorry that you are going through this mess...Sorry that you're in such pain and not getting the treatment you need to make it thru until formal diagnosis. Get back in to see your pcp if things have gotten worse and ask (or demand) something to help you out. If they haven't seem you when it's at it's worse, they just may not be understanding how bad it is.

As far as FMLA, check with your HR department, but I don't believe you necessarily need a diagnosis, just need to have documentation that there is a need for leave - intermittent or fulltime and medical facts that will back up the need. If you're already having some performance issues due to RA, you need to get that paperwork in - any absences until it's submitted could still be held against you. If I remember correctly, you also have 15 days to have medical certifications submitted, so you can request leave and request the forms for your pcp to fill out. Until it's certified, they won't classify it as FMLA, but at least you're moving in that direction.

Hope things go better for you soon.

Jumping on this thread a little late, but I wanted to add my sympathies at your difficult situation. No wonder you're so frustrated and worried.

I also have found that Aleve works better then Ibu. and naproxen is the prescription version of it. I believe double the amount of Aleve equals one naproxen, but I'm not sure. Check with your pharmacist before changing your medication. You've gotten some good advice from the others here and I truly hope you can get in to see an RD sooner rather than later. For what it's worth, a friend was recently dx'd with RA and on her first visit to the RD, even before the blood work, she was given MTX, pred. and pain medication and was functioning very well almost immediately. It won't necessarily take a long time for you to feel some relief from your pain. Take heart. It will get better.

As for your job, if I were HR, I'd be very, very careful about firing someone because of a legitimate health issue. I'd be worried about a lawsuit. Especially since you're a valued, long-time employee. They, of all people should know better. Shame on them.

Finally, here's a hug and a wish for a relief from your pain very soon. Cygnet, that is sad and scary that a healthcare company would act this way. Don't be afraid to consult an attorney if you need to. Also, if there is anything they could do in the way of reasonable accommodations under ADA, don't be afraid to ask for it. When I told my boss I couldn't hold the phone up to my head (ortho said it was bad for my cervical discs and pinched nerves), he got me a fairly expensive wireless headset without my having to make any formal request or anything.

I know it's hard to advocate for yourself when you're in so much pain and so overwhelmed, but keep calling the doctors, or find new ones, until you get one to see you. I know what it's like to worry about being absent too much, getting fired, and losing your insurance...and that stress is only adding to your health problems.

You are in a very messy and stressful situation.
I can't believe your employer would be so down right nasty.

As for the medical system that you have, how disgraceful.

I can't offer any real advice other than to pray to the man upstairs for some guidance....
The above might seem a little far fetched but I have found that answers do come even if not what we would like.

Except the situation and throw it out to the universe and act on intuition and instinct.
Stressing about it will only make your symptoms worse.

My thoughts are with you.
[QUOTE=CathyMN]Sorry that you're in such pain and not getting the treatment you need to make it thru until formal diagnosis. Get back in to see your pcp if things have gotten worse and ask (or demand) something to help you out. If they haven't seem you when it's at it's worse, they just may not be understanding how bad it is. as everyone has said at least call your PCP. there are things that can be done while you are waiting for your rheumatologist appt.

FMLA does not require a diagnosis all it requires is certification that a "serious" medical condition exists. Technically the employer can not even make a determination of how serious the illness is once applied for with all proper paper work filled out they must approve the leave as long as the employee is elgible. So right now your PCP can fill out the paperwork asking for intermitten (as needed) time off

I believe they can send you to a doctor of their choice if they don't believe your doctor, but with positive labs and evident pain and swelling, that should not be a problem. no...an employer can not send you to their own doctor for FMLA leaves. as long as you have properly filled out medical certification and are a qualified employee at a qualified employer they have to approve you for FMLA. By law the employers can not even request a copy of your medical records. Now this is all different if in addition to FMLA leave you are applying for short or long term disability. But those are different entities. FMLA gives you the time off, STD/LTD provides the paycheckAh you're right... I was thinking of workmen's comp.

I echo the recommendation to please try ALEVE! Before my dx I was on Tylenol and narcotics which did NOTHING for the pain. For me, Aleve was the difference between not being able to drive or write, and being able to do so. It didn't take away all of the pain, but enough (and made it so I could bend my wrist some). Now I am on Mobic, which works better, but Aleve is a start. Is PCP willing to prescribe Celebrex, Naproxen, some sort of NSAID? If so make sure you don't take Aleve plus that, but this is what you need. This type of pain needs NSAIDs, not acetemenophin or ibuprofen.

Ibuprofen IS an NSAID. In order to get the full NSAID benefit it needs to be taken in greater quantity than the OTC label dosing guidelines. Thanks for all the input.

I was confusing FMLA with paid disability. I'll have to talk to HR about what specifically they want for FMLA.

FWIW, I woke up this morning and wasn't in much pain. All swelling gone. My monthly friend is visiting, so this may be hormonal ... ? Dunno. At least my hands don't hurt much -- just one wrist a little. (I can deal with other joints hurting, though I'm not happy about it. But when my hands and wrists hurt, it sends me right to crybaby land.)

I'm still totally exhausted today. I went to bed at 6 last night, woke up at 5:30 for work, and was falling asleep during the drive in to work. (I commute with my BF, so he drives, but I usually write and I was nodding off over my laptop.)

(Oh, and re: ibuprofen -- I have a touchy stomach and can't take COX2s due to allergy concerns -- I'm allergic to sulfas and apparently there's some cross sensitivity. I've taken other NSAIDs in the past and they're harder on my stomach than ibuprofen.)

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