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  #1  
Unread 01-04-2004, 06:43 PM
Fibromyalgia

I'd like to hear from any "sisters" who have FM. Over the last 3 months or so, I have noticed an increase in joint aches, muscle aches, fatigue, and of course, not sleeping well. The symptoms are not constant---they typically flair up if my stress level is high, or when the weather changes, and when I've had a lot of clients to work on. (I'm a skincare specialist, but also do body treatments and massage work).

I've done research on FM and am symptomatic of many of the "trigger points". I have yet to go my Dr. for a firm "diagnosis". However, from what I've researched, and journaled, and the trigger points on my body that are painful...I do believe FM is what is going on for me.

I would greatly appreciate input from any FM ladies here---how you manage, how you treat your symptoms, what triggers your symptoms, etc.

Thank you so much for any input.

's
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  #2  
Unread 01-04-2004, 07:13 PM
Fibromyalgia

Hi (((Shelley))),
I'm sorry you may be facing this dreadful dx I was given my dx in Sept of 2000...the symptoms started rearing their ugly head in June or so of the same yr & only increased with each passing day. The pain & stiffness became soo severe I could no longer get out of the bed in the mornings, close my hand to use a pen, walk 2 steps w/o crying out, silly me kept waiting for it to pass *rolleyes*
Well, it didn't & I finally discussed it w/my GP who made the tentative dx & referred me to a Rheumy who had been working with some FMS Patients. She confirmed his diagnosis...yet despite numerous treatment options, therapies med regimens <I even persuaded my Drs. to try a few I read on the net Unfortunately, nothing provided relief. I was encouraged to continue with Pain Mgmt as I had been over the past few months for Chronic Pain & damage resulting from my Hyst & surgeries following. I sought out other opinions & 2 other FMS Specialists all claimed I was suffering a very severe case & offered no other treatments as I had exhausted all options they usually prescribed.

I have found my own ways of keeping the pain at tolerable levels except in the winter, when my pain soars of the charts...
Sleep, for which I sometimes need to take something to help. I also have RLS for which I take Clonazepam. I usually take 1/2 my prescribed dose but increase it if I cant sleep.
Cut out the stressors~the major ones...not always an easy task I've resigned myself to the fact I can no longer do the things I once did. I have not worked in 7 months due to the many ongoing health issues. Accepting that fate has been one of the hardest things for me to realize...FMS can be very cruel...
Pace myself~ I cant keep up the hectic pace of being a single Mom & working 50+ hrs at the job I left<I was with that company for 16 yrs> I accept my limitations & now know when to stop or else I'll pay the following day, which will most likely be spent in bed.
I also take Muscle relaxers in the a.m. & p.m. they help my muscle aches & stiffness. I also take Amitryptilan(sp) an antidepressant that is widely used in the treatment of Chronic Pain. There are exercise regimens, Physical Therapy, Aqua Therapy, meds, a whole load of alternative meds & therapies. I would suggest a referral to a Rheumy, one specializing in FMS. Continue to educate yourself because unfortunately a lot is still not known about this syndrome nor is there a cure.
I have tons of info & research of my own ((Shelley)) if there is something you'd like to know or are unable to find..I might can help?!? Just let me know....also, pls feel free to email/IM/PM me anytime you want. It has helped me talking with others who suffer this as well. Swapping tips on treatment & relief, research info, new studies & research..ect..
Pls keep us posted on how your doing & what your Dr has to say when you make that appt! Good Luck, my friend
There are several other ((Sisters)) here suffering this as well..I'm sure they will be along shortly to share their experiences as well.

((((((hugs))))))
  #3  
Unread 01-04-2004, 07:59 PM
Fibromyalgia

I also have FM. I have had it for years. Stress makes it flare up. Lack of sleep increases the pain. My rheumy said that sleep disorders are a component of FM so it is a vicious cycle. I have to pace myself. Some days are better than others and if I overdo it then I will pay for it for the next few days. Because of unidentified pain since my surgery I have been seeing a massage therapist who deals in pain management. Even though he has not been able to help with the left sided pain that I have continued to have, he has helped with my FM. One thing that I have noticed with myself is that when my body is going through a physical trauma like this surgery, my FM takes a back seat. When things settle down for me then the FM rears it's ugly head again. I don't know if anyone else experience's this but I have seen a pattern of it with me. I used to take Melatonin at night to help with sleep but I developed severe restless leg syndrome and the Melatonin makes it worse. I can no longer take antihistamines either. It is so important to be able to sleep. That would be my first concern in dealing with FM. I would discuss it with your doctor, he/she may able to prescribe something without having to go through a complete workup. I have found that there is no pat answer for the problem. Each day is different in dealing with it. One day I will experience major bone aches and pain, the next it may be muscular, the next headaches. I feel as if I am putting out a new fire each day. I have learned to treat the symptoms and have allowed myself to recognize that there is no cure yet. Good luck and keep us posted. You are in good company with this disease, there are lots of us who suffer with it.
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  #4  
Unread 01-05-2004, 09:06 AM
Fibromyalgia

(((Sheri))) and (((Kelou)))

Thanks so much for your response and sharing your experience.
What both of you have shared confirms my own suspicions. I've noticed the lack of sleep exacerbates my symptoms, and that pacing myself is key. On days when I overdo, I pay for it for at least the next 3 days . I do have an RX for Flexeril, which I've taken at night when I've had my last two flareups---which has helped significantly with the sleep difficulty.

Being in the skincare/massage business, I am trying to have a massage at least twice a month, and do have a massage friend who does excellent work. I think a once a week massage would be more beneficial--if only I could work in the time and $$.

I'm going to make an appt with my GP and get her input/advice as well.

Thanks again! Here's to finding that off-ramp on this bumpy road!

s
  #5  
Unread 01-05-2004, 09:24 AM
I too have Fibro

I will email you some sites that I am on that help you learn to cope and the tricks of the trade so to speak. The one thing that has help is Trigger Point Therapy there is a boo about it I also will email it to you, not sure if we are allowed to put URL's here and names of books. So being on the safe side I will email it. ALoha ELlie
  #6  
Unread 01-05-2004, 11:35 AM
Fibromyalgia

(((Shelley))),
I tried massage therapy a few months after my DX..unfortunately, it only exasperated my pain. After my 1st session, I wound up in bed for 3 days unable to move I continued to keep trying thinking to myself, No pain No gain Despite my repeated attempts to continue this, after several sessions I could no longer take it. My PT even stated that with this making you hurt so bad we are not making things better with this causing you soo much pain. We decided to cease therapy until a time when my symptoms had decreased. Unfortunately, that time has never come. I really thot, for me, this would bring me some relief....

I'm glad you've found what causes you less pain & have some control over it, exp. this early on in the game ((Shelley))!! For me & many other FMS sufferers I've come to know along the way, this seems to be a lot of the battle.
In case you have found it yet, I wanted to share a few of the sites that have helped me the most in my battle against this syndrome:

FibroHugs

The Nets largest source of Research articles on FMS/CFS

Treatment of Fibromyalgia in Detail

Fibromyalgia FAQ for Patients

Fibromyalgia: What it is and how to manage it

Relationship of Hysterectomy to Chronic Fatigue and Fibromyalgia Syndromes

  Quote:
Fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS) are both considered rheumatological diseases whose causes are not known. They can be similar in their presenting symptoms of muscle aches, pains and fatigue which are present in both syndromes. The conditions are overlapping and many women with one of the conditions also meet the diagnostic conditions of the other. Criteria have been developed for the diagnosis of fibromyalgia and although the criteria are mainly based on specific muscle or tendon points of pain, the syndrome also includes "aching all over, poor sleep, stiffness on waking, and being tired all day, headaches, memory and concentration problems, dizziness, numbness and tingling, itching, fluid retention, crampy abdominal or pelvic pain and diarrhea."
With fibromyalgia, the fatigue and tiredness factor is based primarily on sleep deprivation.

Is there a relationship with these conditions and other hormones?
A common working hypothesis about the etiology of chronic fatigue syndrome is that it represents a depletion of or a low basic level of some of the hormones of the adrenal gland such as cortisol and dehydroepiandrosterone (DHEA). Blood hormone level measurements have not always been consistent but it appears there may be a lowering of cortisol and DHEA. Also it has been shown that the adrenal glands are physically smaller, perhaps by 50% in women with chronic fatigue syndrome. Treatment with low dose cortisol supplements have been shown to reduce some of the fatigue in the short run.

Just as with CFS, fibromyalgia has also been studied and thought to represent lowered secretion of adrenal hormones, especially DHEA . The problem with all of these studies of CFS and FMS is that the control groups used were not women with a chronic stress of some sort other than their health condition. The findings of lowered adrenal hormones in women with CFS and FMS are consistent with anyone who has a chronically stressful condition. Some investigators have noted that these findings may be more stress related than disease related.
http://www.wdxcyber.com/npain07.htm
20 Ways to Cope with FMS

Weekly Self-Charting Pain Scale for use with FM

Pain Scale for FMS

Here I said a few There is a ton of info out there just be careful as like everything else some is valid & some is hoaxy....I have more just say the word (((Shelley))

Have a great day!!

((((((hugs))))))
  #7  
Unread 01-05-2004, 03:05 PM
Fibromyalgia

By the Way Shelley,
My massage therapist does not massage me, he uses electrical acupuncture and has protocol for trigger points that correspond to the areas that are bothering me when I go in for that session. After each session I am a little achy but I have noticed big differences in the balance of my body. (I just take some tylenol and by the next day I am usually feeling much better) I used to strain muscles very easily, simply by turning a certain way or lifting something light. Now, I don't seem to have that problem. I have to admit though that I see him once a week and I am really ready for that next session. So, it appears that it will be an ongoing thing. I used to see the chiropractor and that helped but I didn't get the same results. It is trial and error for each of us.
  #8  
Unread 01-05-2004, 05:37 PM
Fibromyalgia

hi shelly,
I too have fibromyalgia. I see a rheumatologist. When I read your post, it could have been me writing it. I felt awful for almost ten years before being diagnosed. I was also being improperly treated for hypothyroidism so that didnt help. Since my "real" diagnosis almost 2 yrs ago I have quit smoking and started to exercise ( not always but I try). I take pamelor in a very low dose for chronic pain and sleep assistance. It does seem to help. WHen my flare ups get bad (usually worse in my elbow) I sometimes get cortisone shots. Painful, but they work. Since my hysterectomy, I am finding I am really sore, all over. It has been a really bad year for me medically. I was diagnosed iwth breast cancer but it was caught soooo early that I am really lucky. If you can find a rheumatologist, they are best equipped to deal with our disease. Good luck and feel free to email me. ps...my symptoms are just like yours.
[email protected]
Colleen
lsh/bso for fibroids
  #9  
Unread 01-05-2004, 05:47 PM
Fibromyalgia

(((Sheri))) Thank you so much for all the great links and information.....you are such a wealth of information

(((Ellie))) thank you as well---I did get your e-mail with additional information.

((Kelou))) my massage therapist does light swedish massage on me, which is about all I can take---it does seem to help with muscle pain. Interesting you stated that sometimes all you have to do is turn a certain way or lift something light and you have spasms. Just this afternoon I walked over and threw something in the trash, and twisted just a bit the wrong way...my lower back is now is spasms and I can barely walk. I'm sitting here with a heating pad

(((Colleen)) as I look back on my history over the last 3 years,,,I can see the pattern of FM that has not been diagnosed. I am going to see my GP this week and ask her about referral to a rheumatologist.

This episode is getting me down---I have a full load of clients tomorrow and I don't believe there is anyway I will be able to work on them...

Thanks again for all the info---it's nice to know I'm not alone
  #10  
Unread 01-05-2004, 06:40 PM
Fibromyalgia

Shelley,

I have FMS, as well, and I probably have had it for five or six years before I was officially diagnosed. I have symptoms from achy pain to sore throats, and I'm so tired it hurts. I didn't think my Celebrex was doing anything for the FMS pain, but when I went off it this summer, I found out how wrong I was. I also take 150 mg of Elavil for a number of my health problems, and it really does help. Be sure to cut down on the stress, and try to avoid denying yourself sleep. All of my symptoms are much worse when I haven't had enough sleep.

If you have any other questions, feel free to PM or e-mail me.

Christy
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