Hi my name is Debbie:
I have gone through H__- to try and get my Dr. to listen to me. I am bipolar and I think as soon as they see that on your chart-- they just write you off before you ever start.
My brother recently died of Hemochrotosis-- 2 brothers dx. full blown HH since then. The Dr. I was seeing FINALLY did the HH test, but the were the WRONG ones to determine if you have it. He FINALLY sent me to a gastreologist and he sent me to do the HH test - so here I sit waiting to heart the results. He also told me that he thought I had Fibromyalgia--- I HAVE BEEN IN BED WITH PAIN SINCE JAN 31. 2005. ALL HE GAVE ME WAS PAIN PILLS.===== Is this as good as it gets????

DO I just need to find someone who seems to care more??? Or is this is it??
I have endured DEBILITATING EXHAUSION FOR 4 YEARS --- I have told my MH Dr. and all he said was WELCOME TO THE WORLD OF DEPRESSION. HE NEVER ONCE told me that PERHAPS I was suffering from Fibromyalgia- even after spelling the symptoms out to him. I DIDN"T know-- I'm not the DR>

I am SCARED - I am MAD---all rolled into one. Hemochromotosis makes you be very depressed as well as Fibromyalgia I understand. I wonder if my dx. of Bipolar was even correct. My symptoms have always been CHRONIC FATIGUE> You have NO IDEA how much ridicule I have suffered from my friends that thought I was pretending but I literally had NO ENERGY to do ANYTHING.

I have been in excruciating pain since Feb.2005-- and I could NOT understand how the pain would be here and be there. I thought I was going crazy. But now after reading about Fibro. - the peices of the puzzle are coming together.

If ANYONE has any words of advice, wisdom for me I would be eternally grateful. It is scarry when you don't know what is happening to you.

Peace.
Debbie

Hi Debbie and welcome to the forums! Sorry to hear about your struggle. I know what you mean about doctors not taking you seriously. I have depression and anxiety/OCD but I have been given medications from sleeping pills to bipolar medications. I am not bipolar, and I have never been diagnosed as such, but the bipolar medications (Depakote and Lamictal) were supposed to help with "mood stabilization". I gained a ton of weight from the drugs and so far do not know if they are doing anything for me. I am trying to get the doctor to wean me off of them. I can't tell you whether or not you've been misdiagnosed, but if you feel you are not being given proper treatment, you may want to get a second opinion.
I have been in pain for a while and very tired, and recently my doctor told me it could be Fibromyalgia. There is a drug caled Cymbalta that they are looking into, but at th is point I am so fed up with popping pills that I am looking for another option. I am tired of dealing with all the side effects and different dosages. Are you on any medications that might have side effects? You may want to review those. At one point I realized I was being prescribed drugs to counterract the side effects of drugs I was already on, a big waste of money and not a healthy way to deal with things IMO.
Have you reviewed your diet? It's good that you've taken the step to go LC because once your blood sugar is under control your moods will improve as well. You may try eliminating any allergens/addictive foods to see if some of your symptoms go away. Sometimes candida can seem like fibro.
And finally, it may be something hormonal if you can't find answers elsewhere. The human endocrine system is so complex and connected to so many other things like mood and energy/metabolism. If your doctor will not run tests, you could go to an endocrinologist and have extensive testing done on hormone levels and thyroid. Take care and don't give up!

Hello, I have been dealing with FM, CFIDS since 1978. Eventually, in the 1990's, I found a good Dr. and know that makes all the difference. I went from getting less attention than the average patience to getting answers. So if your Dr. is not helping you, get another Dr.
One thing I learned is that the difference between FM/CFIDS and depression is: with depression, you can take a walk and feel a little better, whereas with FM/CFIDS you take a little walk and can feel worse up to 3 days later. Also, with depression (not bi-polar type, that's a different story) antidepressants will help, whereas with FM/CFIDS a fraction of some types of antidepressants will help with sleep and some other symptoms, but a full starter dose is too much. There's a lot of different supplements that help different ones at different times. Low carbing helped me a lot. Especially going off wheat and gluten helped with the muscle and joint pain. Every one's different, you really have to be your own advocate. Do research. One book I could recommend to get started is Blood Sugar Blues by Myriam Williamson. Hope this helps.--Gail

Hi Debbie,

I don't know too much about Hemachromatosis, but make sure that it's not something that can mimc the symptoms of Fibro. (As your doc didn't even want to test you, one has to wonder what he knows about it!)

What kind of meds are you on so far? Since there is no cure for FMS, the best many doctors can do is try and control the symptoms.
What they usually do for fatigue is prescribe something to help you get restorative sleep (such as Elavil which also seems to cut pain perception for most people, but other anti-depressants work as well). Next is something for the pain, depending on severity. I have taken Ultram for pain, and it also helps me with energy. (So I only take it in the morning, because I can't sleep if I take it too late.) A lot of people with Fibro have different types of pain, so pain meds can vary widely. I also take Soma, a muscle relaxer, at night to help me get to sleep (because the knots in my back wouldn't let me otherwise.) Sometimes ant-inflammatories can help, but you should be careful with them since many can hurt your stomach, which may be susceptible to IBS if you have Fibro.

Other things that can be helpful include Epsom salt baths, heat or cold packs, and arthritis creams and patches.

Stretching can be very helpful, if you can manage it, even for a few minutes a day. I know any exercise sounds impossible, but keep in mind that your muscles are weakening every day you stay inactive, and this only causes more problems and pain. (Take it from a 26 year old who had to walk with a cane at one time! Until I discovered that it wasn't my knees, but the muscles around them weakening that was causing the pain and unsteadiness!)

A new doctor who can actually help you and knows about treating Fibro is a must for you, and the one you have now doesn't sound like he's helping!

Also, as other people have mentioned, a low-carb diet can be helpful with energy. (I am currently experimenting with this).

A book I am reading right now that seems really helpful is called "Fibromyalgia: The First Year (A Patient Expert Walks you Through Everything You need to Learn and Do.) Although it's not my first year, I'm finding it very helpful, supportive, and thorough, with many useful sections, including coping, and a medication glossary.

Here is a link to a low-carb diet being given by my doctor for Fibromyalgia:

HG Diet

It's technically for Hypoglycemics, but it seems to help with energy in general.

The site also has good info on FMS, and includes a protocol that is thought to reverse FMS. (It's not easy, but I'm giving it a try myself!)

Hope to have been of some help, and hang in there!


Jen

Hi Debbie,

Not too much I can add to the good advice that you have been given here already. I will say that a "gentle" yoga class did help me ALOT!!! The pain worsened at first and then the yoga really began to lessen it and I can walk so much better now. Also, yogic breathing for even 5 minutes a day helps. My g/f is bipolar and altho she does not have FMS the yoga and yogic breathing are helpful to her.
I wish you all the luck and hope you have some relief from the pain...it can be awful. I know first hand!
Hugs,
Nancy

One other thing that helped me, that hasn't been mentioned yet. I went for a massage and the nurse who I went to had FM herself before. She gave me a massage specifically for FM. She told me I would feel worse for 3 days and then better as the soreness eased, and she was right! I didn't need to go back for a year. That was when I was already starting to feel better--I don't think I could've handled it at my worst. What she did seemed very gentle. I told her I could hardly feel her touch. What she did was stretch the fascia which gets very contracted with FM. The fascia is the 'skin' that wraps around the bundles of muscles. Be very careful to find a masseuse that knows what they're doing!

Hi Gail!

Glad you brought that up! I think what you are referring to is Myofascial Release Therapy. I had that done for about three months, and I truly think it's what started me on the road to feeling better! (At least for awhile!)

It works by gently stretching the fascia (muscle sheaths I think) but it also breaks up any lumps, triggerpoints, and any built up toxins. (Which might be part of the reason you felt worse after...I had to drink a quart of water afterwards the first few times, because all the toxins it released would leave me bedridden if I didn't flush them out!)

Anyways, good suggestion!

Jen

Just wanted to emphasize that low carb should be your first way to go. Even before you decide what to do about the pills, try to go low carb. Even if nothing else, eliminate all wheat products.

I got relief from my crunched up muscles with a sonic heat therpay from the PT. Haven't needed it that badly again.

Your supposed bipolar could be something else. But be very careful about getting off anything by yourself.

If you have FM, you should go see a rheumatologist. This is their area and they are much more helpful and in tune than your regular GP (usually).

Sleep if a primary concern for FM sufferers. IF you aren't getting sleep, then you have a problem. I think bi-polar is an easy diagnosis. I have SAD and if someone weren't careful, they might would diagnose me with BP because it does seem tht I get manic in the spring, but it is just because there is enough light finally.

good luck and please don't hesitate to post any questions here.

Hi Again!

Duh! Brain fog here! I completely forgot about massage. I also go for massage to a women who specializes in FMS clients and it does help tremendously.
I also felt like someone had beaten me up for about 3 days and then began to feel better. I couldn't afford her for a while but am back once a month and it does help so much. But for sure..be careful that the practioner knows how to treat a FMS client.
Hugs,
Nancy