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All new to me...please help!
4 Replies
sallydb - September 16

I have suffered for 14 years now with what started originally as severe headaches, sometimes causing me to be admitted to hospital for anything up to 7 months at a time to try and control my pain, and has now progressed to bowel complications (which they mistook for cancer and i had to go for all those tests) and constant pain, cramps and tingling in my legs, almost like pins and needles or numbness. I have also had problems with my sleep for years.
The background of it at the moment is i am under a lot of stress and that isnt helping, but the gp has never suggested Fibromyalgia. A friend suggested it to me and it does seem like i have all the symptoms, my hubby cant even touch my neck or the base of my spine sometimes.
anyway, i wanted your opinion. i am off to see the doctor next tuesday to put it to him but mainly because the amount of med they have me on for all these 'different' conditions are making me worse. sometimes the pain is that bad i stay in bed all day then feel guilty for my kids and my hubby. The doctor has me on voltarol, cyclizine,co-codamol, tramadol, pethidene and diazapam. not the best cocktail!
It gets worse around the time of my period, maybe a week before and 3 days into it. but the pain is always there!
so its over to you... whats your advice, and what should i say to the doctor?
(i have booked to see a different one at the same practice because my usual doctor keeps just giving me drugs and i now want answers)

thank you

sally :)


ptalana - September 17

Hi Sally,
Wow I'm so sorry you've been going thru all that you have. I also suffer from daily migraines, and yes these are always worse just before and following my cycle. Before you see the doctor make a list of any and all your symptoms, I found this extremely helpful as I have fibrofog so bad some days I can't remember my own phone number!!!!While I'm not a doctor many of the symptoms you have do seem to co-relate with FMS. And some of the medications you could be taking may cause upset with your digestive tract, I'm facing my fourth surgery in a little over a year as a result of problems I've developed in my intestines.
I can totally relate to how ineffectual you can feel and the guilt that goes right along with it, most especially how it effects my family!!!! I'm still coming to terms with accepting how my life has changed, not being able to work, walk, drive etc. Having this support forum has been a Godsend to me, and I hope that you will find the same.
When you see this new doctor explain to him as you have stated above you want answers. Unfortunately we all have to be very strong and determined advocates for our health, many of us know too well that some people (doctors included) don't accept FMS as a real condition!!!!
I wish you luck with your upcoming appointment, be strong, and know you are not alone. Getting a diagnosis can be very trying but it's imperative to getting the proper treatment, not just drugs that can also rob you of your life as much as any disease can.
Let us know how everything works out, even if you are not diagnosed with FMS.
Take care, Patty:)


Diagnosed2late - October 22

Have you had Xrays or MRI's of your spine and neck to rule out a bulging or ruptured disc? I ask because as far as I know numbness isn't one of the symptoms of FMS, or at least I have never had it, although everyone is different. Numbness is usually a sign of a compressed nerve or nerves. I am not saying you don't have FMS, but everything else needs to be ruled out first(there is no test for FMS), so that you get the best possible diagnosis, and treatment.

I hope it is something besides FMS. I wouldn't wish this on anyone. God bless you, and stay strong.

How did the appointment go?


lorieholtz - October 24

actually i have read where numbness and tingling is associatated with fibro. i was quite suprised myself about this. i've dealt with these matters but i also have alot of cerical issues and have had surgery. but yes in looking up on the net i have seen this as a symptom....lorie


axxie - October 26

Hi and I’m sorry for the way, you have experienced medicine. You need a new GP, and you need to get copies of all your tests. Everything you describe, represents Fibromyalgia, I believe you were misdiagnosed, you need to find a doctor who will listen and who really knows fibromyalgia.

Fibromyalgia is a chronic condition that causes disabling pain all over the body -- as well as stiffness and tenderness in muscles, tendons, and joints. It is most common among women ages 35 to 55. Although it's one of the most common muscle problems. There is no inflammation or joint damage, as occurs with arthritis. There is no damage to internal body organs, as with rheumatoid conditions like lupus. It is called fibromyalgia syndrome because it is identified by a collection of symptoms.
The list of possible fibromyalgia symptoms is a long one: chronic muscle pain; muscle spasms or leg cramps; sleep problems; severe fatigue; anxiety; depression; morning stiffness; headaches; difficulty concentrating; skin sensitivities; irritability; intestinal problems.
But these, are also common to liver disease such as, lupus, Lyme disease, thyroid dysfunction, heart disease, arthritis, degenerative joint disease, chronic fatigue syndrome, irritable bowel syndrome, and other disorders -- and therein lies the difficulty in diagnosing fibromyalgia. While it's not clear what exactly triggers fibromyalgia.
Fibromyalgia patients have higher levels of two substances -- a nerve chemical called substance P, and nerve growth factor in the spinal fluid. We also have lower than normal levels of the brain chemical serotonin, as is also true with people suffering from depression and anxiety. All this produces a dysfunction in the body's ability to process pain, and creates supersensitive nerves throughout the body, a rheumatology specialist should be able to clearly diagnose you.
To figure out what's going on, doctors diagnose fibromyalgia by examining specific "tender points" on the body. There are 18 specific tender points; specific locations that are tender for everyone. But for people with fibromyalgia, these points are significantly more tender. People are more sensitive at those points. A dysfunction in the central pain processing amplifies the sensation. Tenderness or pain in at least 11 of these 18 points is the hallmark of fibromyalgia. Also, the pain is widespread on both sides of the body, neck, buttocks, shoulders, arms, upper back, and chest. Tender points are around the elbows, shoulders, knees, hips, back of the head, and the breast bone. The muscle pain can range from mild discomfort to severe enough that it limits a person's everyday life, including work and social activities. The pain is often described as burning, gnawing, throbbing, stabbing, or aching. When the person relaxes, the pain may be more noticeable -- and less so when you are active. The result: Everyday sensations of discomfort and pain are amplified beyond the norm. Slight bumps and touches can cause disabling pain, if you have fibromyalgia. This pain can be aggravated by outside factors such as noise, weather changes, and stress.
Prepare for your appointment. Before meeting with the doctor, prepare to accurately communicate your symptoms. Think about, what your symptoms are, and when they started.
How long they've been going on -- and whether it's been continuous, or off and on. Have you noticed any triggers for your symptoms? How do your symptoms affect you? Is pain sharp, a dull ache, does it cause nausea? How do symptoms affect your feelings? Does pain make you depressed or anxious? How do symptoms affect your work or home life? Are you very fatigued and can't do normal activities? What drugs, herbal remedies or supplements are you taking? What surgeries have you had? What current treatments has another doctor or specialist prescribed?
Keep a pain journal, doctors will listen more if you keep a daily record of how you feel, even if it's just for one month or for three months. In your pain journal, make note of intensity of pain (on a scale of 1 to 10), what you were doing at the time, and how you felt emotionally. It will help you and your doctor see patterns in the pain.
There are no lab tests or scans that can help doctors diagnose fibromyalgia. But various blood tests can help them rule out other medical conditions. Some patients need to have respiratory problems checked or get a sleep apnea study done. On occasion, the problem is sleep apnea or snoring, both of which disturb sleep.
Find the right doctor. It's important to find a doctor who cares about you -- and wants to help you. It's very common, physicians having very little time. Sometimes they don't really hear everything a patient says.
Never stay with a physician you don't like or trust. It's not all in your head -- and while you may be depressed, depression is not the whole picture of fibromyalgia. Pain is very frustrating. In the medical community, they probably don't have the empathy for pain that should be.
Get emotional support. A therapist's support can be helpful when you're dealing with fibromyalgia. Fibromyalgia has such a stigma. Sometimes it is really helpful to see a therapist -- not because you're crazy, but because you have to deal with pressure and stigma. It's nice to have someone objective to talk to.



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