In Pain & Tired All The Time :(

Discussion in 'Fibromyalgia Main Forum' started by goingcrazytoday, Oct 31, 2010.

  1. goingcrazytoday

    goingcrazytoday New Member

    Hi everyone, I'm new here. I don't no where else to turn. I went to the Dr. about a month ago with all my complaints. He says one thing at a time, and really I don't want to bombard him. So, i guess it's best doing one thing at a time HAHA.
    I am 33 yrs old. I have been dealing with pain & fatigue for several years. Feels like it gets worse as the years go by. I can't do to many things in one day or I feel ill, almost like I have the flu or a virus?My legs hurt, mostly my left leg. The front of my thigh feels like it has a huge cramp in it all the time. My hips hurt. My back hurts. I feel stiff even after sitting for 5 minutes. Stiff to the point, I can't stand straight up after sitting. I have to walk with my back bent over until my body comes around. And I can't straighten my left leg out because of the cramp. So, I limp around until my body gets used to the new motion I guess?My hands and feet are always cold. If I over-do my exercise, I feel like I have a virus & I run a low grade temp of 99.4 - 99.8 . I'm ready for bed at 7:30. I am married & have 2 children. I try my best to stay awake. I get grouchy, and have been going to bed at 9:30. By 9:30pm I just cant take anymore, I'm exhausted. At night, my back & hips hurt so bad, I toss & turn most of the night. I don't feel that I get a really good rest. I always wake up feeling tired, and repeat the days over again.

    I sat on the floor the other day to carve pumpkins with my children. What a big no-no!!!I paid for it dearly. I got up, and couldn't hardly walk. Every part of my body hurt so bad, and I was limping around. I felt sick & like I needed a nap???I am 33 years old, this is not normal, but what to do??I have had all kinds of blood work & the Dr. says, no Rheumatoid Arthritis. I haven't had any x-rays to rule out osteoarthritis. At this time, he is researching the complaint I have on my right side under my rib cage. He is suspecting gall bladder now. At first I had a cyst on my ovary, but it dissolved and was a functioning cyst. I'm afraid with all my complaints he is going to think I am a hypochondriac & not want to deal with me.

    I don't no where to go from here. Should I be going to a rheumatologist for my complaints with the hurting, achiness & stiffness?
    Thanks so much for any advice & just listening!
  2. greatgran

    greatgran Member

    Not sure what is going on but keep searching. It took me about 3 yrs to find out why I was so sick and tired and still to this day I doubt my dx. which was cfids/fm.. But I have a lot of anxiety/depression now that I didn't then.

    It wouldn't hurt to see a rheumy and keep going back to your reg. doc. maybe if he doesn't know he will send you to others. I am no doc but sounds like fibromyalgia ..

    I do know this disease and trying to get answers can drive you crazy.. I am a basket case and its been 10 yrs.. Please keep us posted and nice to meet you..

    I have no answers but I sure can relate..

    God Bless,
  3. goingcrazytoday

    goingcrazytoday New Member

    Thank you :0) My reg. dr. said this is not normal for me to feel the way I do. It may take digging, but he would do his best to figure it out. I am so afraid he will get tired of me, because I do have so many complaints. I'm very active in my care, I want to no why they prescribe things & what it does. That gets on some Dr's nerves HAHA. I'm not taking something just because he 'says' to.

    We recently got insurance. We are self employed, so it is not a great plan. It's good if we need surgery or hospitalized. But, only provides 5 Dr. visits per family up to 3 family members?If that isn't a crock, when you have 4 in the family HAHA.

    I never felt like this in my early 20's?Feels like ever since my partial hysterectomy my body has gone downward after that. I
    I'm on a Hormone replacement because my estrogen was very low & my testosterone level was zero. My anxiety, depression & moodiness have improved greatly. I was on a anxiety med before the hormone therapy. Plus on & off anti-depressant meds constantly, when I couldn't handle my moods.

    I am so active, it's really quite devestating, to feel so cruddy & have to push myself thru the day.

    Thanks so much for the chat earlier & the message, was great meeting you as well
  4. IntuneJune

    IntuneJune New Member

    As we cannot diagnose ourselves or others (although we can do better than some doctors--grin) we can share our similar experiences. I was in my early 30's with young kids when my complaints sounded a lot like yours. I could not wait until my kids went to bed, so I could climb in. After workup with the rheumatologist, I was given the diagnosis of fibromyalgia. (In the ancient days, it was called fibrositis.)

    Also, my left leg gave me more trouble than the right! I had gone to a couple of ortho docs, the first pointed out my leg lengths were different--outside the normal limits. This inequality upgraded the pain in my left leg, however, I was hurting all over.....again.... sounding so much like you.

    Could not sit on the floor long with my kids, could not straighten up after sitting until my body came around, feverish, flu-like, yady, yady.

    So I was given the diagnosis of FMS, we tried all kinds of meds, nothing touched it, but the rheumy also sent me to the pool. She was not kind in motivating me to get there either. BUT, of everything I have tried, it has helped the most.

    I have learned over the years, (it's been over 30 years since I was diagnosed) that there is definitely a MOST appropriate style of exercising in the water, and temperature of the water makes a BIG difference.

    Also I worked with a physical therapist, wished I had found one early on, starting ten years ago who was trained in myofascial release. That also relieved pain and intuitively, gently, after releasing the fascia, allowed more proper "positioning"/lengthening of the muscles.

    We are all different.....but the pain meds did not work for me, for one reason or another. Some made me care less about the pain, but I still had the pain. Sometimes I did not feel safe driving....

    Tough, tough, tough especially when you have young kids.

    Fondly, June
  5. Nanie46

    Nanie46 Moderator


    Sorry that you are feeling so sick.

    It is likely that your symptoms are caused by one or more chronic infections.

    Many of us here, who were first diagnosed with Fibromyalgia and/or CFS/CFIDS, later found out that they had a chronic Borrelia burgdorferi infection (lyme) and the common coinfections that often go with it (Bartonella, Babesia, Ehrlichia, etc)

    99% of Dr's do not know how to recognize, diagnnose or treat these chronic infections.

    Unfortunately, lyme tests are very, very poor and unreliable. Most people get a negative result on a lyme test and that leaves many people with lyme undiagnosed and untreated.

    In fact, it is wrong to rule out lyme with just a negative test, yet most Dr's do this all the time, again, leaving many people undiagnosed.

    Please read this simple booklet, which has a great symptom list. It could change your life...

    I would also suggest this paper by a lyme expert, Dr Burrascano. It contains a comprehensive symptom list (p 9-11) and symptom info on lyme, bartonella, babesia, ehrlichia (p 22-27).....

    I would suggest getting a western blot IgG and IgM (test # 188 and #189) from Igenex lab in CA....

    This is a tick borne disease specialty lab and they test for more bands than standard labs and use better techniques. Call and get a free test kit. Your Dr can order the tests and then have your blood drawn on a Mon or Tues morning where they can fedex the blood to Igenex (prepaid envelope included) the same day.

    Even if the overall official result is negative, you may have some lyme specific bands show up that can be very important clues to the cause of your illness....see western blot info page 7 of Dr B's paper...

    Also read this important info from another lyme Dr who talks about how to interpret a western blot.....

    I know this is overwhelming, so just start by reading the first booklet.

    You will likely recognize many of your symptoms in the book.

    You can also go to on flash discussion.....sign up for on the Medical Questions posts and post your own is a very busy board with lots of very helpful and intelligent people who can relate.

    There is alot of great info at....

    ILADS is the organization that Lyme literate Dr's belong to.

    Good luck....I had a FM diagnosis for 21 years before doing my own research and finding out I had chronic lyme. I am getting treatment and am getting better.
  6. Tizz

    Tizz New Member


    Don't expect too much from the rheumy though. You probably won't be able to just go in to see them any time you're having problems -- rheumys are often booked for months in advance, and in any case it seems to be pretty "standard" for them to see patients about once every 6 months.

    The important thing is that, if you have the rheumy send reports regularly to your primary doctor after you see them, your regular doctor will most likely feel "empowered" by having a specialist's opinion to rely on, and may be more comfortable about addressing your complaints.
  7. Janalynn

    Janalynn New Member

    I'd see if your Dr. would refer you to a rheumatologist. They are generally who would diagnose Fibro if that's what you have.

    Some rheumy's treat, some just diagnose. I see one now who treats me. Although, admittedly, really what he does, is check with me, see if I have any new symptoms, see how my meds are, if we need to make any new changes etc. One great thing about my Dr. is that he is very knowledgable about Fibro, up on the latest research, meds being approved and he really cares about me. He does not like me in pain.

    Fibro used to be thought of as a diagnosis of exclusion. It's not thought of that way anymore. Besides the tender point test, there really are a host of other symptoms that go along with Fibro.

    While Fibro does usually effect more than just one part of your body, you can have one part that hurts more than another. With your leg though you may also have something else going on.
    Sleep is a big issue with Fibro -

    Dont' worry about sounding like a complainer to your Dr. It's your body and your health. If you're hurting, you need to find out what's going on.

    Good Luck!

  8. Tizz

    Tizz New Member

    Rheumatologists are currently (at least) the specialists who most often deal with fibro.

    A recommendation, though, for GoingCrazy -- call before you go to see the rheumatologist. Find out if he/she treats a lot of fibro patients, or only a few. And if they will answer you -- try to find out if the rheumatologist "believes" in fibro! And if you're lucky enough to find a chatty receptionist, you might even be able to find out what kind of treatments the rheumy uses... whether he/she uses "chemotherapy for pain" or only antispasmidics and antidepressants.

    Unfortunately, many of them don't...

    [This Message was Edited on 11/10/2010]
  9. hagardreams

    hagardreams New Member

    I know what you mean. I was on the floor with my 11 month old grandson, and even though I knew that I was going to hurt, when I got up, it could hardly walk.

    I am one that has to take a nap at least once a day, sometimes twice. Otherwise, I am no good to anyone.

    I sure hope that you will be guided in the right direction, and find the help you need.

  10. linda3273

    linda3273 New Member

    I can sure appreciate what you are going through. The doctor charges me 160.00 for 15 minutes, and she fills the time sitting in from of a computer asking me about daily meds I need refills for. We never get to the part were she examines me or asks me how I am doing. So, for my last visit, I came prepared with a list of new symptoms; a list of questions regarding these symptoms and a request for the medication I needed refilled. I handed her the paper and she freaked out! This doctor, whom I have seen for over a year, told me she wasn't Dr. House M.D. and could not diagnosis anything with this many symptoms. I was so stunned! She did order some tests that I had requested, but never examined me or addressed any of my concerns. I left the office in tears -so frustrating.

    I have been on Lyrica for almost a year now. It really helps me with those stiff body aches and pains. I still get stiff, but I do not feel like the tin man anymore. Although I have tried many different medications; I suffer greatly from the side effects of most. The trying this and trying that has really drained my confidence in medicine. Again, it makes me feel frustrated.

    The other thing I wanted to support you on is seeing the Rheumatologist. I went to see a Rheumatologist after my doctor handed me a print out on fibromyalgia and ask me if this sounded like my symptoms, she never examined me. I wanted to be sure. His office told me that they would do a consult, but would not take over care of my case. He did an exam, he found all the hidden spots and poked them a time or two. I left his office feeling positive about the diagnosis. That was a relief! He also advised me on how to take the Lyrica for the best results. This again was helpful.

    I did apply a year ago with SSD. Just this month they have notified me that I have a disability they will recognize. It is a confusing process. Now I have to wait for an interview to see if I qualify for SSI (which is state medicaid and a monthly payment) or just SSD (which is just a monthly payment). If my brain could only catch up with the requirements for all of this...!

    Every single day my joints hurt. To one degree or another the pain is there. My shoulder has developed a lump on the top of the joint (one of my new symptoms). After crying for a day or two about the treatment from my primary care doc, I began to think about the pain with detective like thoughts. I think that some of the pain in my joints is fibromyalgia, but the shoulder and wrists are from repetitive motion. I used to do hair for a living. I probably have carpel tunnel in my wrists and bursitis in my shoulder. As long as I can move, I fight the pain and push forward. But, like you, I nap everyday. I am too tired to stay up past 9pm even with a two hour nap. The pain takes a hold on you and dealing with it would make anyone grumpy and tired -at least that is what I tell my family! I have a 16 year old and a 15 year old. They are pretty self sufficient.

    I wish you well, and thank-you for sharing,


  11. msvet1954

    msvet1954 New Member

    My name is Yvette, I was dignosed with fibermyalgia about 35 years ago and I am only 56 years old. There have been times of being tired and pain in different places. Over the many years it has gotten really worse. I wanted to ask what does it feel like when you touch certain parts of body what does it feel like.I have a history of arthritis real bad every where I have had a whole right hip replacement and still having problems with my back and hip I fell back in Sept and I think I hurt some other things. In dec I will be undergoing right shoulder surgery because mri was done a my shoulder is all messed up I have tears in rotor cuff and shoulder blade has 2 tears and I have a lot of arthritis and bone spurs. This is a bad time for because of somany other issues fron the fall I had in sept. You know what is so different about these illness I hurt all the time I try to go about my life but it is so painful . Is there any one who is living out there having the same pain I am. I can not sleep not unlwess i take a sleep pill before bed or If I am taking vicadin all day taking 1000 mg every 4 hours I get some relief.
    You mentioned rhumatologist I do see him for the fibermyalgia and arthritis and I see a orthopedic and neorolgy dr for other bone issues.