Fibromyalgia....?

Question

Does anybody who else has Fibromyalgia have any tips...
I have just had my hair cut from waist lenght to the lengh of my bra strap around my back, as I suffer from really bad back when ever I wash my hair leaning over the bath. My partner also has Fibromyalgia and just washing my hair takes over 20 minutes. We use a shower attached to the taps.
My arms also hurt and so does my legs & knees. I have to stop half way through and rest and when we are finished I have to stay where I am as I am unable to get up to walk.
Any idea how I can reduce the pain for the both of us, as my partner also has osteoarthitis in his hands and lower back.

I take 50mg of Amitriptyline most days and some days I take 75mg.

We are in the UK and we live on the 2nd floor, so we both are prescribed amitriptyline.

I forgot we both get DLA low rate care allowance which is £16.50p per week each.
I have a pretty useless doctor who we have had to battle against. I can not take a lot of medication due to allergies, by the way I am 38 and my partner is 39.
We both worked until our bodies could nolonger allow us, yet if it was not due to the chronic pain and the lack of refreshing sleep etc then we would both be working full time.

Co-codamol does not touch the pain I have tried Tramadol which caused severe headaches. DF118's were fine until my body got used to them. I was diagnosed by Dr Davis at the Royal Berkshire Hospital in Reading, Berkshire in 2000 when I was working as an Income Support Officer. My partner was diagnosed by a lovely Dr O'Rouke at The Musgrove Hospital in Taunton, Somerset. My GP in Reading was wonderful, now I have some silly cow. Who cant diagnose s41t, I had to diagnose my mumps to her this week!! She sure is great.

I attended a pain clinic in 2000 at The Battle Hospital in Reading, the strangest thing was it was the furthest room from the front door, so by the time I got to the clinic I was so tired, I was the only 1 with FMS everybody else had Chrons. They insisted on me going on a trampoline, exercise bike, weights etc... by no hydrotherapy? So as you guess I only attended 3 times. I thought the psycologist was a patronising ***** in the highest high heels I had ever seen.

Answer 1

you poor thing--I have had fibro for 5 years now-my hair is short now too-lol-everything is a chore-sometimes even getting out of bed and getting dressed-I know-there are many adjustments you have to make in your life-it helps if you have someone from the outside help you-I was fortunate that way. I changed doctors many many times-Ortopedics-Rheumatologist-even went to Boston Mass to a specialists-I paid for myself- I learned to write things downn on a pad on the wall so I would remember what I needed to do that day.I got a seat for the shower.I got a cane to help me with balance and support when the pain was severe. I could go on and on here.
The best advise I can give you is do not give up the fight-keep searching for what you need-pain clinics are the best places(i went to 3 different ones) I have just been put on Kadian and it is working like a miracle for me.
Also help yourself--those days when I can't get up-I have bird feeders outside my windows-I have relaxation tapes I listen to--sometimes I go for massages-I learned to meditate and do biofeedback--MOSTLY I HAVE LEARNED TO RELAX AND ACCEPT AND SMELL THE ROSES...
I can no longer work as well and it can be very frustrating and financially burdensome.
People laugh at the diagnosis Fibromyalgia---thats cause they don't have it-it is very real--anyone who questins it should walk a mile in my shoes for a week--and I can't walk far-lol
Be good to each other and help yourselves but never give up on finding the right medical treatment no matter how discouraged you can get....bless you....

Answer 2

I have donated a muscle specimen to Boston University. And if your doctor says that Fibromyalgia doesn't exist then here is some information that I got from the doctor in MA.
Autopseys done on people who have died with Fibro. Have 3 to 5 times more neurotransmitters up their spine, which means more messages are sent to the hypythalmas, never letting it rest, which causes a person to not sleep well and when not sleeping well the body doesn't have time to heal. also with all those neurotransmitters, we feel more pain.
Another thing they are studying is that in the mitracondrial of the cell there are enzym problems. Fibro is very much a disease or condition.

I have it.
Have you tried Robitussin? Just the experant type, not the cough supresant. It helps many people with the pain. I take more than the perscribed dosage. I don't take it all the time. it gets too expensive.
The less you move around the more stiff and painful you will be. do stretches, gentle ones, and go for walks. Get plenty of rest and pace yourself physically and emotionally.

Sometimes I rub my knees so much that I get bruised.

Get some Epison Salts and take hot baths with it. It is so relaxing

Eat healthy. cut back on sugear. If you can afford massages get them.

The key is to not overdue it and not under do it.


ARe you able to work? I am not.

If you live in a damp cold climent it is hard on firbro.

Answer 3

I have had fibro since early 90's. Could not get diagnosis until 2001, when I read an article about it and took article to my neurologist. He treats fibro and proved that I have it.

I have been on several different meds. This one has side effects, so they put you on a second one to treat those side effects. #2 has side effects, so they put you on another to treat them.... and it goes on and on.

The thing that has helped me the most is massge therapy. I decided that I wanted to be a massage therapist so I could be my own boss. I went to school two nights a week and worked 40 hours a week. I was afraid that the stress would be too much and I would be forced to drop out of class because of the fibro.

SURPRISE!! The massage sent my fibro into remission! I could not believe the difference! I only take meds rarely - maybe once a month - and then it is only Pamprin or Motrin (something that helps with menstrual cramps.) I have not seen a dr since I began getting massage. And, just so you know, looking back now, I am amazed that I survived 2001/2002 because the fibro was so bad. I remember some vague things about this time, but a lot of specific memories are gone, because I was trying to deal with so much pain. My functional level was at best a 3 out of ten.

WARNING - the first time you get a massage, you need to ask the therapist to do only light to medium work, or you will be really sore the next day. After a few of these visits, they can work more deeply.

Why does it work? From what I understand, chemicals that occur naturally in our body are supposed to be flushed out of our systems. For whatever reason, in fibro, these chemicals stay in our muscles and build up. They irritate the muscles and cause our pain. Massage helps move these chemicals out of our muscles, into the blood, and out the body.

Please, please, please try this. It saved my life.

Blessed be,

Gypsy

Answer 4

Fibromyalgia was once described as a waste bucket diagnosis as the doctors really didn't know what the causal factor of the pain is/was and it is cheaper than getting an MRI or similar scan.

To get a hit list of drugs via 'Answers' is probably a dangerous route to take. What might be an answer is to contact a pain clinic or pester your doctor until they send you to a proper pain clinic where they can assess your pain and offer you treatment or a regime of medication suited to you.

If you have ever had an epidural injection or spinal injection then it may be a completely different ball game. Many people suffer from a disease called Arachnoiditis which is caused by the above but your doctor will be the last person to tell you.

Answer 5

Doing some water exercises in a pool might help. You need to see a physical therapist maybe. Eating a good diet rich in protein, veggies, fruits, and whole grains help too, so I have heard. Also I have heard of people using bee stings for the pain relief of Mutiple Sclerosis, so I wonder if the same treatment will help for Fibromyalgia? Have you talked to your doctor about the pain? Have you asked the doctor to prescribe some good pills? You might need extreme narcotics such as oxycontin (although I don't think pushing pills is the best way to go) You don't wanna be a zombie you just wanna be a normal person who is living a healthy life. Do you have insurance that would cover some Home Nurses to come to your house to help you bath and wash your hair? There are lots of Home Health Care Workers that would gladly come over and help you and your partner with minor house work, bathing, and minor cooking. Good Luck and keep in touch to let me know how your and your partner are doing. Bless You! :-)

Answer 6

Diet rich in dark green leafy veggies and high in omega-3 fatty acids coupled with exercise can have a positive impact on Fibromyalgia when inflammation is a factor. Plus, it's just plain healthy. 8~) Therapeutic massage can often reduce the severity of the aches associated with Fibro. Acupuncturist commonly treat fibromyalgia with very good results.

Answer 7

Hi Jizzi

I attended a pain management clinic, for Fibromyalgia and Chronic Fatigue Syndrome. Which helped me understand my pain better.

This clinic had a Physio, Occupational therapist, Psychologist, a Doctor who specialises in pain and a well being nurse.
These five people then assessed each of us, (5 people in a group) and then worked out a program the was suitable to each of us. This program went for 10 weeks.


One of the main things I learnt was to take pain killers every six hours rather than 8. (this is ONLY if your not on heavy duty pain killers)
Also don't be afraid to use pain killers, when you need them you need them.
Gentle stretching exercises rather than cardio exercises, were recommend. Walking and swimming was also recommended when pain levels are moderate (yeah right).
Drink plenty of water, have a good diet. Omega 3, magnesium, potassium help too.
Avoid coffee, alcohol and smoking, (smoking slows down the blood flow to our body, thus causing more pain)
Massages do help, but they cost money and as you both have fibro, this may not be an option.
Warm baths before bed help, (add a little lavender and chamomile oil mixed in with milk or oil), take a pain killer before climbing into the bath.
Pain killers; Di gesic help, Panamax, or Panadol Extra help, (Di gesic needs a script) and as I said every 6 hours.

Hope this helps

29th Ocotober
Sorry to hear that the pain management clinic was not a good experience, makes me mad when you hear of medical people are patronising, very unprofessional of them.

I can only assume I was one of the lucky ones, who had a good experience, with a pain management clinics.

Answer 8

Hi Hun, and I know how you feel.
Try Yoga and deep tissue massage. My fibro is very deblitating because I have a lot of other illnesses that come with it. (Graves Disease, Non-Restrorative Sleep Disorder, and Rheumatoid Arthritis) Yoga has been a lifesaver. Just start slow and take baby steps. I'm 24 and have been suffering from Fibro since I was 11, with harbingers of the disease since I was 3. I also take Amitriptyline, 200mg each night. Also, try to get a hobby, something that can help you concentrate on other things, rather than your pain. I went into Real Estate because I am disabled by Fibro.
Hope this helps and I'm rooting for you!

Answer 9

I have fibromyalgia - diagnosed about five years ago - though my GP doesn't recognise the condition - saying that it's a get-out for the consultant who can't seem to diagnose anything else! So I'm on a hiding to nothing when I go to see my GP!!

I've found that swimming helps - but only temporarily. I have to dope myself up on Co-codamol (Codeine and paracetamol)most of the time to be able to function in my job.

Answer 10

Magnesium malate or magnesium citrate 150-250 mg 2 or 3 times daily has helped some people.

Glucosamine sulfate 1500 mg daily on an empty stomach is good for osteo arthritis. Fish oil or flaxseed oil supplements may also help.