Have been waiting since last Thursday for a return call from the latest MD and had to leave another message for her “nurse.” She called me right back - must have been my tone - and said that the MD wasnt going to see if a low dose lyrica would work for me. I’ve never tried it, nor am I on anything for pain. When I asked why, she said that the report from the occupational therapist came back and I needed help with stress. Hellooooo!!! So instead of helping me with sleep issues and pain she thinks I should see the hypnotherapist in the clinic. Had to let her know that I had already seen him in 2007 and it was a waste of both time and money. Spent one hour getting my history and the next appt. reading back everything I said the last time! And he said that he didn’t think I would abuse pain meds! Never saw him, the biofeedback person or take all the muscle relaxers that were thrown at me for close to 2 years of daily headaches and neck knots. Turns out I had 2 herniated discs in my neck! I told her I was already seeing a psychotherapist and she can request my records and gave her the name and address.
So I’m back trying to work fulltime on little sleep and mucho pain. I was ready to quit - quit wasting my time and money on doctors and appointments that belittle you - quit throwing my confidence in someone who doesn’t care that you are in pain! The nurse even had the nerve to say " don’t you have some hydrocodone or lidoderm patches to use?" I said yes I do, but the hydro is for the low back pain and if you know anything about Fibro it doesn’t work well on nerve and muscle pain! And what should I do with the patches - stick them all over my aching body and go to work? I told her I am losing patience and she said that I should be more accepting of chronic pain as it isn’t fixed overnight. Don’t I know it!!!
Im through crying at work and while I drive home. I hate this “quality of life.” What life…but pain, work, no sleep - repeat. I dug around in my mail and found the flyer of a new rheumatologist who replaced the one that I saw once in August and then he left - thank goodness. I figured it would take weeks or months for an appt. and was resigned that if I couldn’t get in I was going to have to take a leave from work, because I can’t keep doing this. But I got an appt. in less than two weeks, after quizzing the receptionist to screen her to make sure this doctor doesn’t just diagnose but will treat Fibro. I feel so guilty at times - what do you all do who don’t have insurance? If I had to pay out of pocket for their $384 visits for 8 minutes of time, I wouldn’t be able to eat! It’s just not fair that doctors in this day and age are still treating us like this.
I am hoping and praying that this will be my last rant and I’ll have found someone willing to really listen and help. I know I’m not the only one who has or is going through this - any suggestions right now will gladly be accepted.
Awe Sandi, Hang in there. I sure hope this new Rhuemy will get to the bottom of this for you, mine was my life savor when I needed. I'll keep you in my thoughts and prayers. Lots of hugs to you, Robin Ps. My insurance goes up another $100 in April. That will be over $1600 for me and my hubby per month. Sometimes I wonder if I would be better off without ins and I could go under the county here.
That is outrageous, Robin! And it keeps going up? I shouldn’t even be complaining because I have insurance and can continue on the yellow brick road to finding THE ONE. Those who have none or like you have to pay an enormous sum each month – it makes me sad and angry. I appreciate your upbeat attitude - thank you
I feel for you. The one person you would think would believe in you and understand your issues is your doctor. I had to go through so many tests but not for nearly as long as most of you. I had Bells Palsy before the fibro and all my old doctor would say is Bells Palsy is not supposed to hurt. Well duh I researched on the internet and figured that out so tell me why I am hurting. Needless to say I switched docs to a woman who is a lot more compassionate than he was and diagnosed the fibro after my first visit. I hope this new doc is the one you have been looking for and supports you fully.
What about Ethyl Chloride? My Rheum was having me sprayed each time I was in the office, and he gave me a script for it the last time I was there. Let me find you a link.
Didn't you have back surgery? What about the surgeon, will he see you on a regular basis, or could you get a referral from him as to a Doctor who is not afraid to actually treat you?
My back pain management doctor specializes in injections under X-ray, RFA’s and nerve blocks, etc. She wishes she new more about Fibro. She was the one who referred me to the last doc and when I complained to her about her attitude and not getting back to patients, she talked to her about it because I got an appt. the next day! She was as angry as I was, especially because she’s in the same hospital. I think my medical history has gone on so long that the don’t want to take the time to read my records and figure something out.
I’ve never heard about that spray - how long does it last after you spray it? Does it help with the electrical shock feeling I’ve been getting in my legs? Slept in and I woke up with it again, and will now have them all day. I use voltaren gel on my shoulder, knee and neck. Just takes the edge off.
I spent a lot of time thinking about going through another doctor last night - I have 2 friends that suffer also and they have given up on finding someone. I can really understand why. If I could control the stress at work, I’d do it - but schools don’t work like that.
I am so looking forward to our Easter break - warm water pool everyday, relaxing and play time with my granddaughter. I think that will be the best medicine I can get right now!
SK - I’m hoping I don’t have to go to the University of Madison. One would think being near a large city (Milwaukee) I could find one. I guess there is some hope yet :). Thanks everyone for your support - you can’t believe how much it helps. hugs to all~ Sandi
SANDI,I am sorry that you are in so much pain, but I understand, because I have the same problem, you hurt everyday and you get so emotional at times and you can't stop yourself, you just break. This fibro is something to deal with, young or old. But I never thought of using the patches for my pain. You should try for your disability. But really I understand because I go thru the same thing with my pain, no one understand and they really do not listen to the fact that your paining. Only someone that is going thru the same thing you are and it is a lot of us our there. I am amazed at the fact that there is so many, how and why do our bodies hurt like this. There is really a Big Community of Fibro patients our there.
BUT TRY FOR YOUR DISABILITY IF YOU CAN'T WORK, YOU SHOULD HAVE ENOUGH EVIDENCE THAT YOU CAN'T WORK.
Ugh, Goddess took the words right out of my mouth "Apply for disability, Sandi." Start getting copies of your records, especially those where you tried and fail, which is probably all of them. Enough is enough. The ONE doctor may or may not come into your life but at least ssdi could take alot of the pressure off of you in the meantime, and keep you from crashing and burning and worsening your condition.
I'm so sorry you're having such a bad time with doctors, Sandi. I sure don't know how people with fibro, who live in the states, do it either. It's a wonder some have 2 cents to rub together, (some don't even have that!) I wish I could offer some help, but I hope your new rheumy gives you something for the fibro pain. Please don't give up trying, warm hugs, Charlie.
Hi. I’m so sorry you’re in pain.I’m new I don’t have computer skills. I just try. I’ve had so had so many Drs like that I just handle it. Just keep on keeping on. Feel better. etccj aka Elaine
I'm confused. You're working full time and they don't give you insurance?
Also, can you combine doctors to just a rheumatologist or pain management specialist? Sometimes we get sent to so many specialists that our wallets hurt more than we do. I am struggling with this issue, even with insurance. The co-pays get larger, the coverage gets smaller, and the meds I need are not covered. Thank God for RxAssist, or I wouldn't be able to afford my inhaler.
I have no idea what else you could do besides combine doctors and use RxAssist. The RxAssist card is a godsend.
I have never heard of Lyrica helping with depression, by the way. Pain, yes, but when I was on it I gained 45 lbs. and felt worse. Everyone's different, but I have found gabapentin and Cymbalta to be my best mix of meds. Just a lil' feedback on Lyrica.
So infuriating! Have you considered getting a Patient Advocate? Some will work for free or for a small fee. Here is a website.....FYI If you do not know, these folks help patients who are getting the "run around".
Hi Sandi, I here you so well, I think finding the right Dr. / dr’s is worth the effort, have you tried Gabapentin ? And those lidocaine patches are useless, my pain dr changed mine to Flector patch’s they help take the edge of neck & back pain, but lately the Salonpas hot has helped more,
Sandi , I have been where you are now, in terms of working, I pushed myself to the breaking point and 7 months later I still don’t feel recovered to the point I was at, when work was hard but not impossible, I often wonder had I pushed my self past a point of no return ??
Plan ahead as much as you can for short term disability, LTD, & then SSDI, as much as I miss my job, and still hope to be able to return in some fashion, I still wish I had saved more money, and had the reality of fibro & working a bit more clear in my head.
I hope that made sense … I’m fogging today
Many hugs & blessings
dee
HI Sandi - "" you should be more accepting of chronic pain, as it isn't fixed overnight???"" OMG!! I am livid!! This coming from a nurse? Does she have any idea that you have suffered chronic pain for ages? I think all of us Fibro patients should open up a huge office of our own, as with actual patients running it - we would do FAR better then the Medical profession in understanding what we go through and treating other patients efficiently and quickly. A fantasy, I know. But I can dream - can't I? This is just so ridiculous and outrageous!
Hopefully, you will have success with the new Rheumy and get some results, Sandi! Yes, the 'quality of life' we have is not the best and this is why we keep fighting to get answers. But there are times that we all get really exhausted and fed up too. Be strong and try to have positive thoughts about the new doctor you will be seeing. There HAS to be hope!! Love, Laurie
Thank you for all the kind words of encouragement and advice. I do have insurance through my husband's employer, but we have a high deductible each year and have to pay a percentage on visits, lab tests, scans, etc. until we reach an out of pocket limit. I think I've hit it before the end of the first quarter! My employer has been wonderful and I that is where the guilt comes in - they treat me so well, but that's because they don't want to lose me as I am the most knowledgeable, which helps my principal and the district alot. When I sat down with my boss and human resources to discuss me using up the 800 hours of sick time to sleep in and come in later, I was told that once I use up those hours I have both short term and long term disability insurance available to me. I wasn't planning on retiring for about 2-3 years, but don't think I will make it. I am very fortunate in that I have that to fall back on but know that they will insist that I apply for social security disability at some time.
Let me share with you a funny story - guess who I get a call from on my way to work this morning? The nurse who ruined my day yesterday. Change of tune today! Who knows why the doctor changed her tune - maybe because she saw that I had made an appt. with a rheumatologist - all connected hrough the same healthcare system - but I was told that they were calling in a script for 25 mg of lyrica to take twice a day, as well as more lidoderm patches, as well as lunesta for sleep. This is exactly what I said to her "What changed since yesterday? Yesterday I needed to learn to handle stress and today I get what I was told I was going to get at my last appt.!" After a brief silence, she said the doctor made this decision. Hah!!!! I'm still keeping my appt. with the rheumatologist, as I'd like it to be noted that I saw a rheumatologist who didn't up and leave after I saw him once, as well as to maybe eliminate this skitzo doctor who can't seem to make up her mind. I surely don't wish this on anyone. I'm finding that taking the advice from other members has been a big help - to be assertive, copy all my medical records and fight for what I feel is just! Best advice I've ever got :)
I took a voluntary lay off and now I wonder how I ever did my work with the pain., sometimes I wonder if it’s hormones too. I was in Walmart yesterday and felt pressure and pain in my neck and chest and I didn’t know if I was going to make it to the checkout ., but I took a deep breath and made it home. I have been watching this show called Dr. Becker and his wife Cindy . They discuss a lot of the symptoms we are having. I followed his advice and got my d3 checked and it was ver low. I have felt better after taking 5000 mg a day. He is on the net. A lot of co- workers can never imagine what you are going through. I have found that many women even become homeless fighting this illness.
Wow I am having the same experiences being told my pain is in my head or acting like I was drug seeking. I never abused a medication in my life. Now I am being told to go to psychotherapy because I need to learn to work on controlling my pain and needs skills to do this. WTF I have been working my whole life as a nurse and have had spinal cord surgery and lots of other disk problems and Fibro. I think the doctors can't admit they have limited means to help you. I have been working so they act like I can continue to keep this up. It is so frustrating that no one understands. I finally hired an attorney and am going for a disability claim. This is a huge decision that I have been back and forth on for a while. I can only make 40% of my income and this way and it can take a couple of years before it is approved. I am lucky that I have an accepted claim for my neck due to a patient assaulting me and that does pay for my appointments-but a lot of doctors don't want to see you if it is worker comp. I had one tell me there are no free rides-hell I was assaulted. When I read your story it sounded all to familiar. HR wont help me with paperwork..
The attorney told me on the phone it does not matter what the doctor think if you are able to work or not.. It is the attorneys job to show your diagnoses, symptoms, and make the court understand how your disease affects your ability to work. I have weighted this heavily and hope this works for me. It is an option, at my work if you quality for disability you can keep your health insurance, but still have to pay the monthly fee.
HI Diane - it's just awful with all we go through, isn't it?? For me, one of the hardest things to explain is when I am limping and very sore one day and then the next day feel a lot better. It's puzzling to me as well, but this is what my Fibro is. I had a fairly good day yesterday, but woke up this morning in horrible pain, bent over and really limping. I let go of a few 'friends' because of their callous remarks and impatience with me. Also - seeing me one day being okay and the next NOT being okay, caused them to not believe me. I had one girl tell me that I was just 'looking for attention!' That was the catalyst, really, that caused me to regroup and really think about whether I wanted these people in my life. Well, you know the decision I made.
My son, Jason is extremely supportive of me, but my daughter, Kim, is not. I had to choose to not be around her unless necessary because she has such an enormous negative impact on me. It was a sad decision, as I have a beautiful 8 year old grandson, Hunter. I don't really get to see him as much now. But I am struggling every day with my illnesses and need to really take care of myself and one of the things I have to be careful of is good ol' stress! Laurie
