I'm usually stoic, but this time, I really hurt. Advice? (long)

Discussion in 'Fibromyalgia Main Forum' started by daylilyfan, Aug 21, 2005.

  1. daylilyfan

    daylilyfan New Member

    I've had this DD for over 30 years, and I was diagnosed 2 years ago. I've been able to hold down a job, and get by, but sometimes it is pretty tough. I hide my pain pretty well from my co-workers and Mom, who is 80 and lives with me, (and takes no meds, and is as spry and healthy as most 35 year olds).

    Normally I take Avalide and Norvasc for high blood pressure, Singulair for asthma and allergies, and 30mg Cymbalta (can't tolerate any higher dose) and 30mg Flexeril at bedtime for fibro... with an Aleve now and then. It doesn't really help the fibro, but I've been coping with the pain so long, I am just used to it. I tried Ultram, but it gave me a nasty headache. Tried other antidepressants, and other NSAIDs, way to many side effects and they didn't help anyway. She tried me on 25 mg Topomax twice a day and it helped a bit, but not all that much.

    The last couple months, I have had increasing pain in my neck, and in my shoulders near my back bone, and below my shoulder blades. It has become so painful that I no longer dry my hair, I almost cry trying to carry in a gallon of milk from the car - those kinds of things.

    I went to the family Dr. who usually treats me for fibro. She does not believe in "pain meds" for fibro, which is ok, because I usually don't need them. I told her this shoulder pain is more than I can deal with, we gotta do something. She changed me to tizanidine, 1- 3 times a day. Said call her in a couple weeks if it didn't help. Grr.... I went home and looked in my cabinet for help, found a box of duragesic patches from 3 years ago (diff. Dr.) when i had a severe back injury. Put one on... several hours later - NO PAIN!!

    Thought about overnight, then called my Rheumy. I go once a year, in Sept. They got me in the next morning. She had totally different ideas. She gave a few shots of steroid across the most painful areas. Said take 4 a day of Tizanidine a day, take 2 topamax twice a day, then 3 at bedtime. Take up to 8 Ultram a day. Take 2 Aleve a day. Said topamax would take care of the headache from the Ultram. Said family dr. was on right track, just to cautious with meds. She ordered me a TENS unit for home, and for a month of physical therapy. Come back in a month. I want to ask her if I can start seeing her all the time for my fibro instead of my family Dr. She is an hour and a half drive, but she is so compasionate, and such a good Dr. Also, she's not afraid of the prescription pad. She's never given me pain meds, but I don't care if she does, as long as what ever she does give me, it works. She did tell me to go ahead and use the duragesic if I had them and they work.

    SO - here I am, about 3 weeks later. Ultram, tizanidine and topamax have made 90% of me much better, except shoulders/neck. TENS has not helped, even using it 4 times a day. I went for the consult to start the therapy, and she just did the testing to see how strong my upper body muscles were and OMG!!!!!!!! NOW I HURT!!!!!!!!!!!!!!!!! She said I would, and scheduled the therapy for 5 days later because of it, but parts of me that didn't hurt really do now. I cannot believe how bad I hurt. I am supposed to start the treatment on Tuesday... I am now dreading it. I've been buying those menthol heat patches and covering my shoulders with them. I've been using my microwave rice hot packs.

    I'm just not sure if I should try to see the Dr. again, or just wait and give the PT a chance. I just know I HURT.... and being a person who has put up with a lot, without meds, when I tell them I hurt, I really mean it, but I just don't know how to get that across. They have those forms to fill out - about what you can or cannot do because of pain. Well, I HAVE to do things even if I do hurt - I live with Mom in the country, with no one else to do it if I don't. I don't have a choice. I told the therapist that it's not like the pain is a heart attack that will kill me. Pain hurts, but it's not life threatining. I do what I have to and let what I don't have to do sit.

    I am wondering if I should call the Rhemy and see if I should get back in to see her again before the scheduled appt?
    Also should I call the Physical T. and tell her how bad I still am and see if I should cancel the session for Tues? Or see if she has any suggestions?
    Any suggestions anyone?
    Just needed to vent. I feel better having written it out to people who understand. I don't actully know anyone in "person" who has this DD to talk to. This board is all I have to talk to!
    [This Message was Edited on 08/21/2005]
  2. tejanya

    tejanya New Member

    i am having that type of pain in my hand the last few days. i take soma for muscle relaxing and if real severe tylenol 3. at night i take 3 imiprimine,it is a antidepressant, pain blocker, and helps me get the stage 4 sleep that repairs the system. i mite take the ty 3 once a week, maybe. before getting on here today, i was on the verge of tears. this is not me. but if the system needs it, ok. maybe it wo'nt show up after it ;leave you good peoples and deal with the famliy. today at 2:30 i have a 4 yr old and 7 month old to take care of. thank goodness my husband and son understand my need to repair. i am blessed with a few friends that try to understand i hurt but look good doing it!!!!! yeah! i will not be shy and keep helpful info from others. try reading devin starlanyl book and fibro and cfs, it has helped me a great deal, as well others who would listen. i highlite mine and refer to it quite a bit. today was one of those times. glad my hubby got it for me. god Bless and don't let others opinion be yours.
  3. Denamay

    Denamay New Member

    My goodness you are having a bad time of it.

    It sounds like you have hit on a good dr. with the rhemy.

    Maybe give her a call for an earlier appointment.

    I spent a lot of time and money going to a physio therapist.

    I took treatments for about four years. I can'nt say it helped that much with the pain.

    But, my posture,muscle condition and strength have improved++++.

    In fact, the physio treatments I recieved were very painful and they put me out of commission for several days at a time.

    A massage does the same thing to me.

    The strenght across my back and shoulders is much stronger now, so I seldom have that awfull ache ,when I do the simplest thing with my arms, though I still have to be very careful.

    I am making a special lily bed in my garden.

    I am going to do a little planting now and I will think of you. What a nice name, daylily. Love Denamay

  4. laura81655

    laura81655 New Member

    If the physio-therapy gets to be too much, can you suggest trying it in a warm pool? I have done this with a physical therapist and it is not as hard as doing the exercises on land. I get pretty bad upper back and shoulder pain. What helped the most was pool therapy and massage. It hurts afterwards for quite awhile, but then it starts to get better. I still have pain there, but not as bad.
    Best wishes...
  5. daylilyfan

    daylilyfan New Member

    thanks for listening. It's not like me to complain. I'm just really frustrated and I know that those here understand.

    I'm glad to know the PT may help, even if it hurts. My Insuranse will cover 20 visits a year. Hope it helps before I use up the 20 visits.

    The PT lady said for now just to work on chin tucks, which I have been doing.

    One reason I got into gardening was for the exercise years ago. Dayliles are good, because you can plant them once, and they grow without attention for years. It's one of my stress relievers to see the flowers grow and bloom. Unfortunately, it's also a source of stress when I get behind when I hurt, and the garden becomes an untidy mess. At least I live out in the country, back in a clearing in the woods, where no one else can see - so if it gets to bad, I just giveup and say I'll try harder next year.

    I don't want to become a "demanding patient" or otherwise pain in the butt to the Rheumy, but I do think I'll go ahead and give them a call tomorrow, as well as the PT lady.

    It is so frustrating to want to get better so badly, yet be so afraid to try the exercises because of the additional pain.