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Just live with it?

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Fibromyalgia
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linchu13
Regular Member
Joined : Mar 2013
Posts : 32
Posted 3/12/2013 3:44 PM (GMT -7)
Hello everyone,

I am new to this site. I was diagnosed with Fibro last year after suffering for approx 5 years and not being diagnosed correctly. I also have a laundry list of other medical issues such as IBS, EBV, asthmatic allergies, degenerative osteoarthritis, hypothyroidism, chronic cystitis, headaches (migraine and tension) and mild hypoglycemia (Phew). I also suffer from mild OCD and anxiety. I have been to two rheumatologists so far. The first told me to increase Savella (stopped it after 6 weeks d/t side effects) and to exercise. The second MD told me to exercise, try massage therapy, see a therapist, and try natural supplements if I wanted too. I am very chemically sensitive and cannot take many medications. He also prescribed Klonopin.

At this point I feel that doctors do not take me seriously regarding the Fibro. They are more concerned about my orthopedic issues. My pain mgmt doctor prescribes Lidoderm patches and Oxycodone which takes the edge off.

I have done much reading on Fibro and have decided to try the natural supplements. I also am going to try hydrotherapy and maybe myofascial massage therapy which is expensive and not covered by my insurance. Has anyone tried this therapy?

My last Rheumatologist stated that this condition is a chronic one and that any form of therapy is a bandaid. You have to find whatever will give you some relief and basically live with it.
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MyselfRedux
Veteran Member
Joined : Dec 2009
Posts : 6232
Posted 3/12/2013 4:27 PM (GMT -7)
I love my water work. I started doing an older lady aqua aerobics five years ago. Now I do a deep water exercise routine, with a belt and dumbbells. It has made a huge difference to me.
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getting by
Forum Moderator
Joined : Sep 2007
Posts : 45195
Posted 3/12/2013 6:12 PM (GMT -7)
In a way, finding what will help and living with it is all that we can do. But that doesn't mean giving up. Keep trying to find things that will help you. There are supplements that can help you. If you get a chance, look on "fibro 101". It talks about malic acid supplements and they work good for many people. Also vitamin D3 helps me and fish oil. I hope that you find what is right for you. Water exercise is excellet as was posted above by Myself...

Hugs, Karen...
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Acheybody
Veteran Member
Joined : Nov 2008
Posts : 6036
Posted 3/12/2013 8:30 PM (GMT -7)
Welcome, Linchu.

Well, yes, it's true that Fibro is a chronic condition and nothing is going to take away all the pain from it. At this time anyway, that's just the nature of the beast. But there's a big difference between pain and P-A-I-N! You shouldn't have to live with daily severe pain. My GP treats both my Fibro and the fallout pain from a disc problem...the latter is far more severe (in my case.) But he does take Fibro seriously, and I know that he doesn't dismiss my complaints. I feel so lucky to have found this doctor. It took awhile.

How long have you been on Klonopin, and is it working for you? I take it too, for sleep - that and Nortriptyline - we need to get to that oh-so-important deep sleep level in order to help our bodies heal themselves.

I don't do hydotherapy per se, but I do walk in the warm water pool now and then, since my spine surgery. I wish I could do it more. I always feel energized for the rest of the day, and like some of my kinks are out.

Good luck to you, and I hope you'll keep posting. As Karen said, Fibro 101 is a great thread. It has links with possible symptoms, a list of, "what else could it be?" and lots more.

Debbie
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linchu13
Regular Member
Joined : Mar 2013
Posts : 32
Posted 3/13/2013 8:51 AM (GMT -7)
Thank you all for the welcome. I recently bought the book Healing Fibromyalgia by Dr. Edelberg and it is now my bible. This book is loaded with info on every aspect of Fibro including medications and alternative meds, resources..etc..I guess my doctors are frustrated with me because I have side effects with many meds. I have tried Savella, Cymbalta and Lyrica all with horrible side effects. I am afraid to try Klonopin because I have read that you need to be weaned off this med if you decide to stop and it can cause severe withdrawal symptoms and seizures. I usually sleep at night but toss and turn alot. Every night is different for me.
I am also on a medical leave from my job and most likely will lose job because it is too stressful for me physically and mentally. I have thought of applying for SSD. Any advice on this? Thanks again!
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Sherrine
Forum Moderator
Joined : Apr 2005
Posts : 18414
Posted 3/13/2013 9:34 AM (GMT -7)
Hi, Linchu, and welcome!  I won't take Lyrica, Savella, or Cymbalta...just my personal choice but I do use ibuprofen with food, extra strength Tylenol, Malic Acid/Magnesium supplements, Vitamin D3 supplements, and a muscle relaxer to help with pain and fatigue.  The muscle relaxer has really helped me with sleep, too.  I would be up about every 1 1/2-2 hours all night long.  Now I only get up once to use the bathroom.  The extra rest has helped with my pain, too.

 

I also do gentle stretching exercises, gentle daily exercises like walking or swimming, and I pace myself.  I also get a gentle massage once a month and it does help me.  You do need to be sure that the massage therapist has been trained in massaging myofacial pain syndrome and fibro clients.  Mine has.  Gentle massage is the best.  A deep massage would put me in bed.  Here is a good link to hopefully find a good massage therapist in your area.  To be a member of this organization, these therapists have to continue taking classes about all the various techniques for many illnesses.  My massages cost $50 for an hour and $35 for a half an hour....and that is about what most massages therapists usually charge but yet these therapists have a lot of education behind them.  Always ask if they have been trained in the area of myofascial pain and fibro before you set up an appointment.

 

  http://www.amtamassage.org/findamassage/index.html?utm_source=%2Ffindamassage%2Flocator.aspx&utm_medium=web&utm_campaign=redirect

 

You do need to keep moving with fibro, too.  If you sit or lay too much you will be stiff as a board and have more pain. 

 

Your last rheumatologist is correct in saying that this is a chronic condition and that you are basically treating symptoms.  That's because doctors still are not positive what is causing fibro.  It is now believed that it is a neurological problem but they haven't figured out why this is happening.  You will need to try various things before you hit on what will help you keep your pain under control.  We all go through this because what works for one doesn't necessarily work for another when it comes to fibro pain.

 

Be sure to read Fibro 101...the first thread on the forum.  It is chocked full of good info about fibro and you will learn a lot there.  Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You also will find links to gentle stretching exercises and the supplements I mentioned above.  You just might see yourself there.

 

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 

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almost medfree
Veteran Member
Joined : Jan 2004
Posts : 2570
Posted 3/13/2013 11:26 AM (GMT -7)
Hi linchu,

I've done myofascial massage therapy. I had several sessions. It felt good but it didn't help in the long run.

What seems to be helping me more is neuromuscular massage therapy.

Good luck to you.
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