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Calistoscript
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 10/21/2009 7:39 AM (GMT -7)   
Hi... I'm new to this forum... I'm very relieved to finally find somewhere safe to get some support for my fibro related issues. The past few months have been very difficult for me to cope with. Up until this past August I was working full time as a social worker - a job I love, and clients I love  - but am now home trying to recover from a very long flare up. I have fibro and RA in my hips and spine.  I have incredible pain in my hips and legs, sometimes in my elbows, hands, shoulders and neck. We've tried several different meds, and the cortisone shots in each hip without success.. I have no stamina whatsoever and most recently have been having problems with urinary frequency. I also have horrendous headaches which can last for days, and episodes of fibro fog which are embarassing for me, as I usually am quite sharp and witty. I feel like I am falling apart.I have a wonderful family Dr., who has been fantastic - however - progress has been slow even though I have been 100% compliant with medication ( rhovane, meloxicam, benzodiazepene, etc.... )and all other requests from her.  I am using a cane to move about outside the house, since stability is an issue and to be honest, it just plain hurts to walk. I am still home from work, and am desperate to get back there but have resigned myself to follow my Dr's advice, even when it conflicts with what I want to try to do. I'm usually very stubborn, and have always been the type of person who does everything for everyone regardless of how difficult the task might be... but not now. My employer is trying to help me transition back to work - but the Dr. can't support this yet....I feel cut off from the rest of the world, as I spend most of my days at home where my environment is quiet and predictable. Outings I have made ( to the grocery store, or appointments ) are sometimes so horrible ( painful to move around, I break out in a cold sweat, start to feel weak and on the verge of collapse ) that I avoid them. I have no idea how long these flare ups can last. I know I most certainly have had them in the past, but can't remember how long they lasted...I'm doing exercises ( stretching and walking ) every day and am resting in between the small household  jobs I plan for myself. Progress is miniscule.  How long can this go on? I need my life back! Help!! I'm becoming very depressed about all of this........ sad
Live each moment as if it is a gift...because it is.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 10/21/2009 7:54 AM (GMT -7)   
Hi, Calistoscript, and welcome.  Boy, this did hit you like a ton of bricks!  The RA is playing into this a lot, too.  I'm glad to see that you are doing stretching exercises and walking.  At least with fibro, walking is wonderful and does help with the pain.  Water exercises are wonderful, too, if you have access to a pool.
 
There is no set pattern with flares.  We don't know when we will be hit with them or how long they will last.  My worst flare lasted about six months. 
 
Be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good information about fibromyalgia and you might get some ideas and help there.
 
I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 to help with pain and fatigue.  There are links about the malic acid and the vitamin D3 in the Fibro 101 thread that explain how these work in your body.  Many with fibro are deficient in these and they can cause pain and fatigue.
 
Do you have a Bed Buddy?  You can get them at Walgreen's and other places.  Or, you can make your own by taking a tube sock, filling it 2/3's full of long grain rice and tying a knot at the end.  Pop it in the microwave and it gives off moist heat that really feels wonderful on those muscles.
 
The malic acid has helped me some with fatigue.  Also, it is important to get on a sleep schedule and watch the caffeine you are eating and drinking.  I personally need to stop drinking tea by 5 PM or I can't get to sleep at night.
 
I'm so glad you found us and joined in!  We have wonderful members that love to help one another and we really do care about each other, too.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/21/2009 12:06 PM (GMT -7)   
Hi Calistoscript, welcome to the forum. I am sorry you are hurting. Flares can be so
debilitating and so very frustrating. We can't always prevent flares, but we can be
careful not to overdo and try to eliminate some stress from our lives. Sometimes easier
said than done. Pacing ourselves is so important.

Have you ever been treated with an immunosuppressant such as Methotrexate? It is used
to treat autoimmune connective tissue diseases and RA fits into that category. The med
is used to help slow down the progression of the disease. RA flares affect fibro and fibro
flares will affect RA. Pain and stress and the stress of chronic pain is a viscous cycle.

I am taking Savella and Flexeril for fibromyalgia. I have seen some improvement
with these meds on a daily basis, but when a flare kicks in I'm hurting bad. I also take
Methotrexate for MCTD.

It is good to see you are exercising, it really does help with the pain and stiffness.
To also help with the pain and stress, I soak in a hot bath. I also do relaxation therapy, deep breathing and I try to get a long daily walk in when I can.

I hope your flare ends very quickly!!!! Sending gentle hugs, and prayers.

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


yo-yo
Regular Member


Date Joined Aug 2009
Total Posts : 159
   Posted 10/21/2009 12:30 PM (GMT -7)   
Hi Calistoscript,
 
So good to have you join us here.  You will find friendly people and lots of support.  I too was a social worker who loved my job but ultimately found it to be too much to deal with and retired at 60.  I wanted to stay longer but the getting into and out of my car for appts and home visits, and the emotional toll of dealing with dysfunctional clients daily and the pain and massive fatigue finally got to me.  I really understand your statement about being one "who does everything for everyone".  That was me and I've had to learn  a new way of dealing with life and people.  The word "NO" was probably one of the hardest words for me to learn.  But learning to say it has helped me deal with fibro and helped me learn to pace my life in a better way.  You also mentioned that now your life is "quiet and predictable"  Basically, that is the very best enviornment for someone who is in a major flare.  Exercising and resting between tasks is good and you are doing that. 
 
As Sherrine said flares are unpredictable and can last any amount of time until they run their course.  Going with the flow is the best way to deal with a flare---they won't be rushed even if we would like them to take a hike! LOL!
 
Anyway, welcome  and come back often for support.
Yoyo

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 10/21/2009 12:49 PM (GMT -7)   
Hi Calistoscript and welcome. It is frustrating when you feel your doing everything you can to help yourself but fibro just won't budge. I know the change in seasons has been hard on a lot of us. I have osteo arthritis and it seems to flare right along with the fibro, I can't imagine having RA too. You just want to scream " I have a life to live leave me alone".
 
I have quit for the day and have my little heater next to me to sooth my aching muscles. Heat is our friend in any form.
 
Hope it gets better soon so you can get back to work.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


Calistoscript
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 10/21/2009 4:20 PM (GMT -7)   
Awww ladies, thanks so much for the encouraging words and support. I do a decent job of coping most days, but this morning I was a hurting unit! And I really miss my job to a crazy extent... I am beginning to understand that I will not win this battle by forcing myself... LOL.. this "brute stubbornness" as my husband refers to it is not working with the fibro. The RA is not helping... I am taking Flexoril at night and am supposed to be taking a sleepy pill at bed time..but my daughter is expecting our first grand daughter any second and it makes me tooo sleepy....since our beautiful girl lives with us I need to be up and awake in a moments notice if needed. I do the hot baths (life saver) and love my heat bag.. which has travelled around the microwave a million miles or so!! It is good to know that I'm not the only one struggling with this... I can't believe how ignorant I was about Fibro until now... terrible, to not know about it. I do now, so thats the main thing.. thanks for the support and encouraging words.... soooo helpful... I've been home from work now since August and would love to tell my employer I will be back soon, but I just can't. Progress is S-L-O-W and this is totally annoying. One day good, the next terrible... and the pain, never really ever goes away. I worry about my job, but have been told by the union not to concern myself with anything more than getting well... but still... inside me is the girl who needs to know that she earned the $$ that is being direct deposited into the bank.... sigh.... anyhow... thanks for listening....

Jan
Live each moment as if it is a gift...because it is.

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