Well it has been a week since I have been trying to excersize¨.. let me tell you all... I can hardly walk. Between that and then going off the gabapentin and arthrotec. ( suggested by the Rheumatologist) I saw last week.
Also he did not schedule any kind of another appointment to see me. Just asked if I had a follow up with the pulmonologist. I said yes in April.
Basically, now that I have tried to adjust to what he said to me.. Basically he said you have fibromyalgia and some muscular skeletal issues. You also happen to have a very dry mouth and a very irritable skin and abdominal issues. Irritable bladder and bowels.
Then he looked at me and said I am referring you to a program that will help you to excersize and strenghen your muscles.. He said I was extremely stiff.. NO #$%$%$ He said only thing for you to do now is education and excersize.
So thats it after a year of waiting. I now know I have fibro but he just looks at me and says this. NO blood tests , MRI or anything .. He just magically knows and sent me on my merry way. All the points I had to talk with him about he did not want any of it. Just to ask his questions. I did not even get to tell him about my cognitive difficulties or many other issues I am experiencing..This guy was so imtimidating..
When do we get help for any of this.. He also told me I cannot go back to work til June 1st..I am so confused right now. I hurt so bad it is unbelievable and with no follow up I really thinks my husband just thinks I can instantly get better... I guess I am on my own again to suffer thru this all and smile while I am doing it. OH yeah now the insurance company says the note from the Rheumy is not enough They need more. I called them today and said it is there job to get the information from the Dr. as this is what his nurse told me to tell them.. If I thought I was confused before ... now I really am.
I truly apologize for being so down but all around me here just keep saying isn't it great you do not have RA.. Now you can get back to normal.. Not so easily done. Really hope tomorrow is a better day!\! Hope the rest of you are pain free today Hugs Lisa
Lisa, I here your frustration, and I totally understand… It can be so deflating to wait and hope that you may finally get some clarity, only to be more confused.
Number one most important thing… Find a dr that understands fibro & is willing to work with you & help you sort it all out.
It helps so much, when my dr listens, understands and agree’s to see me every 6-8 weeks to help work on my check list. I have also found it very helpful to have many different dr’s, my primary, pain management & a neurologist, and rheumy and now I want to see an endocrinologist.
It took almost 3 years to build this team, as many visits to some dr’s were just a plain waste of time !!!
What that dr said to you is simply not acceptable !!! Take him off your list !!!
There is so much we can do to help manage fibro, and wasting our time & energy on someone who won’t listen is not one of them.
I made it a point to see someone at least once a month, that may sound like a lot, but to build my team of dr’s that are willing to work with me is what it took.
Please don’t apologize, we all get it … Totally !!!
As for the exercise, if you are hurting more, you may need to start out slower… For me that meant … Really slow… Recumbent bike 5 min 2x day, I am up to 7 min 3x day with a bit more resistance… So very gradual
Warm pool therapy and stretching ( beg yoga ) has helped. I started exercise 4-5 weeks ago, when my knees started hurting, I thought … Oh no, this will not get worse !!! So I’m trusting that this mild exercise will keep things from progressing.
Managing fibro has been , for me , a full time job… Between diet modification, finding the right supplements, exercise and appointments, I have learned I need 10 hrs sleep, no more than 2-4 hrs out at a time, only every other day, frequent resting, and not sitting more than 30 min at a time. It’s all a lot to manage, but I am still learning… Stay encouraged it does get better
This site has been a blessing for me… So much great info & friendships, it makes a huge difference to know your not alone…
Hugs & blessings
dee
Dee, Thank you so much as your words are very helpful. I know I have so much to learn and really appreciate the words of wisdom from others who have been down this road. I really do think I was so excited at first that I overdid it and am now paying a big price. LOL My good mood has returned as I kinow with all the help out here, I am very lucky. Thanks smiles Lisa
HI Lisa - I am amazed at the number of boyfriends and husbands who can't seem to understand what we all go through. It's horrible not to get support from someone you love, isn't it? Getting support is EXTREMELY important! Looks like you had a bad doctor there, Lisa. All of us seem to have so much trouble finding one that cares about us and is willing to do all the tests that need to be done. Being our own advocate, I guess, is the only way we can get ahead. I remember years ago, doctors were so wonderful and truly cared about what I was going through. Sadly, I don't see this anymore and its annoying and especially, frustrating! Lisa, don't ever apologize for venting. It's what we are here for. I worked for many years at the Humane Society and a Animal Hospital in the surgery unit. I absolutely loved my job. Sadly, I had to retire about 7 years ago. The Fibro was increasingly getting worse and the fatigue was just getting too overwhelming. I really miss working - but I had no choice. I needed to take care of myself. I hope your job doesn't include lifting anything heavy? I had to lift really heavy bags of dog and cat food - and it really took a toll on me - especially my shoulders and back. I truly hope you can get on the road to less pain? You just have to be aggressive at times to get what you need to feel better. Please keep us posted? Love, Laurie
He is just not 'your Doctor', you just have not found him or her yet! We don't need that kind of treatment and dismissive attitude! So sorry you had to go through that garbage! It always sets me off to hear of any of us being treated with distain, yet he puts you off work until June, well he must think something is wrong. Sorry you had to go through such a contradictory message!
Listen to dee, she is a nurse, and I would have thanked my lucky stars to have ever had her as my nurse, believe me!
I know you are frustrated, and it knocks the hope out of you, but get it back. Don't kill yourself with exercises when stretching is probably a better place to start. I do not mean to contradict a Doctor, but I have been given the diagnosis of "stiff" too, while having 3 autoimmune diseases.
Pilates has become a big market, but the man who came up with it devised it for bedridden patients, so perhaps something between a stretch and a light pilates is a better idea for a starting point for you than strenuous exercises!
Thanks SK for making me smile that’s such a beautiful compliment !!!
I miss the patient contact so much, it was such a huge blessing for me to be able to make someone less nervous, or feel at ease, hold a hand and get a smile … Ugh
Thankyou !!!
Hugs
dee
Thank you Laurie , just having your support and kind words is enough for me today. I know I have to be strong and become a much better advocate for myself. Today I feel stronger which is good. It is wonderful to have people to talk to about all this. Hugs
Thank you SK, I am going to check out the info you posted for me. This kind of togetherness really does help when you mind is in overwhelm mode. LOL I am so blessed to have you all to help me with this. I cannot believe the amount of support on this site . It is so welcoming and needed today and I will become a stonger individual for joining this site.. Thanks
I am not sure Rachael, He just said the GP had me on too many drugs ( meaning the gabapentin and arthrotec ) and to get off of them. I told him she was just doing what she could to help with the pain I was feeling on a constant basis.
It was like he was too busy to be looking after someone like me.. I knew it as soon as he came in but i JUST KEPT HOPING FOR SOMETHING FROM HIM. At least I did get a diagnosis finally. He was quite old ( retiring age ) so maybe he has old fashioned beliefs about all this fibromyalgia condition. I will find a considerate Dr. soon.
I just have to keep thinking on the positive side and find out all I can . I honestly do not think I can go back to my job.. It is very physical , lifting and more lifting, sometimes when I job coach at the Ramada with a client I must get down on my knees and scrub showers and toilets for 8 hours. I don't even do that at home... (laughing)well at least I am laughing today!!!
It's good that you can laugh today, Lisa. But, apart fom your diagnosis of fibromyalgia, you really didn't feel that your rheumy doctor was much interested in you. I am sure you can find a doctor in the Clinic in my town that you feel cares about you and will listen to you. The sooner you find that kind of doctor the better you will feel. It takes awhile to get to know a new doctor and their ways, but oh how worthwhile that is. Then you will have a much shorter distance to drive for your appointments. You need to find that doctor now so that you can start building a relationship with him. There is a lady here who is good, but I heard she was leaving. I have noticed that when you book an appointment the receptionists must jot down what you want to talk about because that is all the doctor is willing to talk about so I have learned to say, I have two? or I have three? things I need to talk about and they note this and give you more time so be sure to do this when you book your appointment. It's always a good thing to jot down what you want to ask the doctor because fibrofog can take it right out of your mouth!!! I think the sooner you find a local doctor the better it will be as you start to develop a rapport with that doctor. It takes time to dfo this. On my first visit with my new local doctor I asked him several questions, Do you believe in the existense of fibromyalgia? Do you keep up to date with new information to do with fibromyalgia? My new doctor has told me to go ahead and research things on the internet so I have and then I have asked him if such and such is true because not everything posted on the internet is true. Also, GPs do not have the time to keep current with all the health matters of each of their patients. Go find that doctor and discuss things here and keep connected with people here as we care and support each other. We are not medical professionals, but we have a lot of experience with fibro and we have learned a lot about fibro and about our own bodies. We have also learned to develop rapport with our doctors........and trust your "gut" feeling about new doctors. Don't be afraid to move on and try another doctor if your gut feeling says so. It is critically important that we find a doctor with whom we feel comfortable. You will find one.
