what works for one is not for everyone

[Guest guest]

Nadine,

Regarding your post about medications and treatments, I have

to comment on a few things you said to remind people of the need to be open

minded when it comes to treatments for FMS. I have tried things that I never

thought I would, or didn’t really think would work, but needed to do it

just so I could say I tried everything.

First, I am sorry you have so much pain and I am glad that

you have found some things that work for you. I have degenerative

arthritis everywhere which has resulted in 2 surgeries so far, along with my

FMS, CFS and other random problems (i.e. meningitis 4 times) – so I know a

lot about FMS pain, arthritis pain, surgery pain and headache pain. I

know that you are trying to help and you have made some good points; but, using

myself as an example, your steps 1-4 below do not represent a treatment

regiment that is good for everyone. 1st trigger point massage…

if I have a deep massage like that I would be in a flare for a week, not to

mention the muscle spasms I get when being pressed on like that. There

are other types of gentle P/T and massage however, that do work for me. 2nd:

Moist heat is good for some people, but ice works better for others

because of potential swelling. If it can be tolerated, alternating heat

and ice is good too. A heated, scented bag (rice bag, lavender, etc)

makes me sick to my stomach. I do not tolerate many smells, and am allergic

to some of the chemicals in the aroma therapy heat packs. 4th: You

are right, water aerobics is good for many people, me included. But, many

people cannot even get out of bed let alone go to a facility with a pool and

get into a bathing suit to swim. I run an on-line FM support group, and

we have had some very heated discussions about exercise. We came to the

conclusion that some people just cannot tolerate exercise – period.

Also, for people with CFS and ME, exercise can even be dangerous. Your

comments about medications come across as being very judgmental: “It

in no way helps Fibromyalgia pain, only normal muscle pain after

injury/surgery.” I take pain medication and it is what

keeps me off of the couch. I personally take offense to that

comment. Whitney made a very good point about the difference between

being emotionally addicted and physically addicted to narcotics, and I am sure

Dominie has something in her newsletter archives about the subject as well.

The theory about the headaches being caused by tight muscles may be true for

some people, but over half of the people with FMS suffer with migraines, which is

a separate, diagnosable condition within the CSS spectrum of disorders of

FMS. So please, don’t downplay the need for medication for

migraines because you have your own theory of the origin of the pain.

Chiropractic care helps a lot of people by doing more than just giving you

exercises. Although it is not my treatment of choice, one shouldn’t

be discouraged from trying it – they may be surprised!

I know you are trying to be supportive of others with your

recommendations of treatments and theories, but please try not to be so

opinionated. With FMS, there is more unknown than known – so it is

very important for everyone to keep an open mind!

Shari Ferbert

On Jan 8, 2008 2:00 PM, nadine redman <nlraccount > wrote:

> I have pain too, along with arthritis in both knees, hands, fingers,

> feet, and lower back. My neck and back, hips, and shoulders hurt on a

daily

> basis. Most days after being on my feet at work my heels just scream at

> me. I am on Lyrica, Effexor, Seroquil, Synthroid (did everyone know that

> most people with Fibro have Thyroid issues?) I also have high BP so I take

> Accupril for that. Anyway, my husband is a Physical Therapy Assistant, and

> let me tell you what helps tremendously. There are a few things......1st

is

> a trigger point massage, hurts like hell, but afterwards your body feels

> amazing. 2nd heat.....moist heat only. Homemade rice bags are great, and

> so are the Chammomile and Lavender wraps from Kohls. 3rd a Paraffin wrap

on

> your hands and feet. You can find the Paraffin machines at Wal-Mart,

Kohls,

> Macys, and Meijer stores. That does wonders for hands that hurt and feet

> that won't stop throbbing. 4th water aerobics or just walking around in a

> heated swimming pool and doing exercises.

> For the person on all the meds......wow. You can become very addicted to

> Vicodin, Percocet, etc.. Not to mention with that you build up a

> tolerance. It in no way helps Fibromyalgia pain, only normal muscle pain

> after injury/surgery. Why are you on Imitrex? For the headaches? Does it

> help? Honestly most people with Fibro that have the extreme headaches is

> because of the knotted muscles in our necks and upper backs and shoulders.

> Try a good massage therapist. They would be a heck of a lot less expensive

> than all the medication your on. Chiropractors only help if they give you

> the exercises to strengthen the weak areas they keep working on. Yes, pain

> is a daily part of all of our lives. Some days are worse than others. I

> think a lot of times we expect to have a pain free existance, and well,

that

> isn't going to happen. I think accepting that has helped me out

> tremendously because just accepting that has focused me to living with it

> and working with it. There are also doctors that are pain specialists that

> some go to. I personally haven't been to one, but there is that help out

> there too. Hang in there!!!!!!!!!!! We know how you feel!!!!

> Nadine

>

>