My life has suddenly stopped!

Hi everyone
I'm new and very glad i found this forum.
A couple of years ago I was diagnosed with Chronic fatigue and fibre, after having a few traumatic experiences, running 3 businesses as well as coping with 3 teenage girls one who was having mental health issues…rebellious, etc etc.
Obviously i understand how I got the chronic fatigue, but the fibro only really affected me in the morning with stiffness.
3 months ago I had an arthroscope done on my knee and coincidentally, my fibre has become unbearable.
I didn't know it could be like this, I can hardly walk as my thighs and buttocks burn and ache and are soooo stiff, I can't turn over in bed anymore because my upper arms feel like I have lifted 100kg weights for 3 hours or something. My hips feel dislocated as do my shoulders.
I can't pick up things off the floor, I love gardening and can't even do that now.I can't even sit on the loo without letting myself fall onto it, and well getting up off it is sooooo painful.
I can hardly dress myself anymore let alone dry my feet and all of this has happened so quickly! Is this a flare, how long do they last? Or is this how it will be for the rest of my life? I am terrified at this rate I will end in a wheelchair, so I am seeing a massage therapist and personal trainer for stretching and a new diet to help maintain muscle strength.

Please tell me this gets better, I am in so much pain i dont sleep well, feel "woozy" a lot and if I move around the pain is intense but if i have a rest, the pain is even worse when i try and get up.
My dr is a bit aloof about it saying theres no cure other than massage etc, but will give me a referral to a rheumatologist as i have asked. My mum has peripheral neuropathy at 78, and celiac disease, neither of which came up in my blood tests. My husband has been helpful but I feel like a hypochondriac and feel noone believes me.
Is there anyone out there who experiences pain all day every day like this, I read others seem to be able to work and do things but i can't seem to do much at all….although I try!!

Post Edited By Moderator (getting by) : 12/21/2013 5:01:51 AM (GMT-7)

Hi, Trying Hard, and welcome! Yes, we usually get better once we find what helps us be in control of the pain of fibro. Unfortunately, what works for one doesn't necessarily work for another with fibro. It is a trial and error process but you will get lots of good ideas on this forum!

It sounds almost like you may have sciatic nerve or sacroiliitis problems. I'm not a doctor but you are describing how I felt a little over a year ago. I've had fibro for 26 years but then started getting worse and worse. Well, fibro isn't a progressive illness so I headed to a rheumatologist to see if he could figure out what was going on with me. My symptoms were very similar to yours. I had back pain and pain running down my thighs to below my knees and I had excrutiating pain just trying to lift each foot off the floor to take a step. I had to use two canes to walk, was walking in inches, and I would break out in a cold sweat when I needed to use the bathroom because that meant I had to walk! It was hard to sit down on the toilet and I used my hands and arms as much as possible to lower myself but sometimes I ended up dropping down like you do. Then I would put my hands on the seat to help lift myself off the toilet when finished.

Trying to get my legs into bed was another trick and my entire back killed me. I used a wonderful product called Sombra that my massage therapist suggested to me. Since I'm by myself, I bought the roll on Sombra, got my long barbeque tongs to hold the roll on, and was able to reach my back that way.

I was so miserable but I'm a stubborn son of a gun and never give up hope. After getting a total history of my health, my new rheumy ran me through about 25 x-rays, took 8 vials of blood work, and sent me for two MRS's. I was diagnosed with ankylosing spondylitis and sacroiliitis...along with my fibro. I was put on ibuprofen with food, Tylenol, and a muscle relaxer called Robaxin. The muscle relaxer has helped me significantly. I used to wake up every two hours or so because of pain but now I wake up once a night to use the bathroom. I am walking without the bad pain in my back, hips, and legs, I am doing my gardening, cleaning my home, and I was even scrubbing the baseboards right before Thanksgiving! I still have pain but not the horrible pain I was experiencing when I headed to the rheumy.

So, yes, you can get help and you can feel better. Rarely does a person with fibro end up in a wheelchair. If they sit too much and don't use the muscles I suppose you could but that would be rare. There also are things you could have along with fibro that could cause walking problems, too. You do need to find out what is going on. I hope you have a thorough board certified rheumatologist who treats fibro patients. That is important.

For my fibro and muscle pain, I use ibuprofen with food, Tylenol, the Robaxin, vitamin D3, and magnesium malate. I do daily stretching exercises, I walk daily...now ...and I pace myself when doing things. I have gotten massages from a massage therapist that was trained in how to massage people with fibro and myofacial pain syndrome. You would want gentle massages. A deep massage would send me to the hospital.

I also use trigger point therapy and this could help your shoulders and actually a lot of the pain you have. We have trigger points all over our bodies. I purchased The Trigger Point Therapy Workbook off Amazon because I heard it was excellent and it has diagrams as to where to look for the trigger points that are causing certain pain. Much of our pain is referred pain. For example, a few days ago I woke up because of bad pain in my side. I haven't had that happen in quite some time. I knew where the trigger points were for that particular side pain since I dealt with it before. The trigger points are in my back! I got out a tennis ball and used that by leaning against the wall and mimiced the massage movement. I did this for a few minutes, the pain lessened, and I could get back to sleep. When I awoke in the morning I didn't have any side pain. I cured my frozen shoulder using trigger point therapy and this workbook, too.

Be sure to read Fibro 101...the first thread on the forum. There are good links about fibro and you will learn a lot there. There are links about the supplements I mentioned above and how they work in the body and there are even some gentle stretching exercises that can be done sitting down. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Trying_hard

I've come to think of my pain as a roller coaster ride..

I feel your frustration- Literally.
Am sorry you have all these issues but glad you found this forum. We know so we believe.

It sounds like you are still in the grieving process. Yes, we do go through that since we are grieving the loss of our good health. But you sound like you are close to acceptance because you are ready to face fibro head on and kick it to the curb! I'm stubborn, too, and I never give up on anything. I kept trying things until I hit on what works for me and I'm sure you will too.

Oh, in Fibro 101 there is a wonderful link about maintaining a positive attitude when you have chronic pain. I'm a positive thinker and it has helped me so much. Studies have shown how thinking positively helps with illnesses and healing. I think a part of that is that you are't so stressed out and worried. So check that out, too!

Sherrine