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My Rheumatologist is not helping
6 Replies
ASadReality - July 14

Is anyone out there from the Milwaukee area and has a great Rheum. maybe? Mine actually made me cry yesterday and did I really need that? I thought the specialists were supposed to help you feel better and work with you to find something that works? Obviously our plan is not working and she can't just throw that "Depression" label at me. I was diagnosed with Fibro 3 years ago and have degenerative disc disease and osteoarthritis in both knees. Just was diagnosed with Pseudogout by the Orthopedic Surgeon that did my knee surgery. Also have chronic severely low Vitamin D (now on supplements), have a positive Rheumatoid Factor, and ocassionaly an electrolyte imbalance (dehydrate very easily even though i am a huge water drinker). I have been bumped up to 400 mg a day of Gabapentin, on Amytryptaline, and Wellbutrin. Still achy, tired, sad, and just darn frustrated! Cna anyone suggest something or someone to help me get my life back???


Stacey373 - July 14

Hi asadreality! I'm so sorry you are having to deal with a doctor like that. I think you can look on-line or call the hospital and look specifically for a doctor who specializes in fibromyalgia in your area. Some doctors still don't believe that FMS is real and others just don't know how to deal with it at all. so you should really find a doctor that sympathizes with you and also knows how to deal with all of this. With all your different illnesses, maybe you will need to see more than one specialist...I don't know....but you definately need to find a new doctor that will be more willing to help you. Keep looking and don't give up! There's got to be one out there. I finally found a Nurse Practitioner who was willing to learn about FMS with me and try anything to help me.

I know how frustrating this can all be...I've dealt with it for many years. Especially when they label "depression" as the cause of all your problems. Depression is one symptom, not a diagnosis! (did that make any sense? I hope so! LOL)

You named all the medications you are you take anything for the pain? To me, the 3 major medications you should be taking are an anti-depressant, sleeping meds, and prescription pain meds. Maybe start with those 3 and then work your way up from there to help with the rest of your problems.

I don't know...I hope this helps you a little....sorry I don't have very good information for you. Take Care of Yourself and let me know how it goes, Stacey :o)


ASadReality - July 15

Thank you for your support and empathy Stacey!I did do a search yesterday and found some options. I am seeing an Orthopod and also my GP- both are very supportive. As far as pain meds, I do need those! I am at my wits end bc Vicodin works if I'm in a really bad way, but otherwise I was taking Ibuprofen (suggested by the Rheum) and developed an ulcer. I am on Gabapentin and that has helped some, until recently. Now that aching, nawing, deep bone and muscle pain in my thighs is back. The Rheum said she would let me go to 400mg a day, only bc I insisted she do something for me. Unfortunately my feet and ankles swell terribly from it, one side effect that makes it even more difficult to live with the pain in my legs really. The headaches are back too. It just seems I am way too young to feel so old. If I feel like this at 41, how will I feel at 81? It's terrifying to think i am practically wasting my life away being in pain every day and not doing things i wish i could. That's where the Rheum has failed me, she just doesn't know what else she can do for me she said. Ridiculous!!
How long have you had FMS? How do you get relief? Do you work FT? This is part of my problem I think, working FT is kicking my rear!


Stacey373 - July 16


No, I don't work. I'm very lucky to have a husband who has always made sure I could stay home with the kids if I wanted to. And in the last few years I just haven't been able to work even if I wanted to. I actually tried working and it lasted about 3 months and then I just couldn't keep going. I'm also not the most reliable employee when I constantly get bad headaches and end up in bed for days each time. I have nothing but respect for all of you who can or do keep working through this illness. Do you have the option to quit working? Or even to only work part-time?
I was diagnosed with Fibro about 1 1/2 years ago....but I've been dealing with the major symptoms of it for many years longer than that. honestly, I just recently started "dealing" with this illness in the past couple of months. The one major thing that gives me relief are my pain pills. I really don't know what I'd do without them! With them, I'm able to get out of bed and live a half-way "normal" life. Yes, I still have "bad days", but I have a lot more "good days" than not. I think this is why I strongly advise you to do what you can to get a prescription for any type of pain killer. I'm sure you have figured out by now that OTC meds don't work and you are damaging your body by taking them.

I've also been walking. I just started this and I'm still not sure if walking is actually helping me physically. The one good thing is I'm not "over doing" it's not hurting me either. I do think it's helping me some-what with the mental part of this. I feel like I'm accomplishing something and that makes me feel good about myself. And it helps with the part you were saying about you're "too young to feel this old".

and I bought the Trigger Point Therapy Workbook. Turns out I was already doing all the things it says in the book to do and I already knew the concept of what the book is trying to teach you. but I think it helped me a little with making me recognize the trigger points, instead of guessing like I was doing before.

I hope you have a good day, let me know how it goes with the doctors, Stacey :o)


lucky13 - July 23

You really need a good team of Drs and if you feel one is not doing what they should or can, then you need to find a new one.
My Rheumy perfers Tylenol over advil or alieve, and I use Tylenol Athritis for over the counter help.

I hope you are able to find a good Rheumy, it's so important.


ASadReality - July 28

Hi Stacy and Lucky-
Well I lost my job 2 weeks ago unexpectedly. They say they have eliminated my position, but i think my 7 week FMLA medical leave when i had knee surgery contributed to it. I feel physically better bc i have less stress from the job. However, i have more stress bc I need to make more money to now cover COBRA payments, my mortgage, my enormous medical bills, and support my two kids. Thankfully my GP stepped up to the plate, whereas the Rheum didn't at all. Course stepping up the Wellbutrin only means i have to pay more for drugs. But if it makes me cope better I'll come up with the cash somehow. Just seems to suck more and more every day.


Stacey373 - July 29

Hi asadreality, I'm so sorry that you lost your job. I understand it's probably a curse and a blessing all at the same time! My husband has been laid-off for over a year now and I know how hard it can be. Our's is a blessing because he decided to go back to school while he's not working, but money sure is tight and there have been many months I've had to do some "creative budgeting". For us, in the long run this will be for the best...but he's still got a couple more years of schooling and who knows how long the unemployment will last! (he's in the Union so as long as they can't give him work he can draw unemployment with no questions asked)

we did lose our insurance back in January. Between my medical problems and my 2 girls being ADHD, it's cost us a small fortune each month just for all the meds, not to mention the doctor appts. however, my doctor (and the girl's dr) is willing to see us on a cash basis. And because I have to pay cash same day, they also give me a huge discount.

The local "small town" pharmacy I go to signed me and the girls up for their prescription program so I'm only paying about half the regular cost of the meds. Of course, it still costs quite a bit (my 2 girl's meds cost $300 a month out of pocket)But it's better than paying full price!

At this point, I've finally had enough and I'm going to the welfare office on Friday. I've got to get my kids some medical insurance before we really do have an emergency! but my doctor wants me to apply for some sort of disability through the state. From what I understand, it's a lot easier to go through the state (welfare) rather than federal (social security). She said the only thing I would need is a letter from her stating I have Fibro and that I can't work. I figure if nothing else, I might be able to get medical support through them.

anyways...Just wanted to give you this information and hopefully it will help your situation. Oh! I forgot to tell you...we chose not to keep Cobra because it would have actually cost us more to pay that per month than what we are actually paying for medical and prescriptions. so that might be an option for you a temporary option until you can get some help, hopefully. Also, talk to your doctor about applying to the med companies and you can also get help through them...even might get some of your meds for free.

I really hope this all helps you...I know how difficult and stressful this all can be. Take Care and let us know how it goes, Stacey :o)



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