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newly diagnosed with lots of ?????
11 Replies
inpainandirritated - August 30

Hello all, I was dx'd with Fibro about 4 months ago. Symptoms started after my last child, 2 years ago, in which I had my first c-sect. I am 40 and have 5 children. I have lost my job due to this syndrome. Pain is daily with mood swings. I also have 2 bulging discs in my lower back and 2 disc protusions in my neck. I have been seeing my Rheumatologist for just as long. He started me on Lyrica and it and I did not have a good relationship. though it helped some with pain mentally I felt reckless, like I didn't care. Really showed when I drove...I took chances I would never take even with the kids in the car. Also, the fibrofog got worse. So now he has put me on Effexor 37.5mg taken twice daily...so far not so much. Like so many of you Norco 5/325 (Hydrocodone) works well for me. I only take it when the pain gets too bad. Yet have not been given by my doc. His NP did give me 30 when I called in tears begging for relief. When I asked for refill I was given 10. I have had the pressure point injection in my left lower back/butt that only worked for about 3 days. I find it really hard to accept that I can't get relief for the pain, that I need to suffer while I wait MONTHS for a anti-depressant to help my pain. I am considering going to a pain management physician to help me deal. Any comments or advise would be greatly appreciated. ^_^

 

Stacey373 - August 30

Hi Inpain - I'm sorry that you are having such a hard time. I understand how hard c-sections can be...I had all 3 of my kids by c-section and my last one took MONTHS to start feeling better. That was almost 10 years ago and I STILL have problems from all the scar tissue!

I'm not a doctor, but in my opinion, you NEED other medications....not just an anti-depressant. Although, sometimes it's hard to find one that works for each person, an anti-depressant is a very important med to be taking with Fibro. Along with that, you should be taking a sleeping med, pain pills, vitamins, and possibly a muscle relaxer and Neurontin (gabapentin). Neurontin is a very common drug for fibro people to take...I took it for years but then it stopped working and I quit taking it.

From the sounds of it, your doctor really doesn't know how to treat fibro. If it's possible, I would find a new doctor that understands all the symptoms and is willing to give you the meds you need to deal with this. There should be no reason for them to NOT prescribe you pain pills .... especially with all your other medical problems.

As far as I know, Effexor doesn't help the pain associated with Fibro. I think Cymbalta is the only anti-depressant that does help with the pain. So I'm not even sure why you are being given that, unless your doctor thinks all of your pain and problems are caused by depression. And if that's the case...definitely find a new doctor ASAP!

also, it's not good to wait until your pain is unbearable and then take a pain pill. Once it gets to that point, usually the drugs won't help much at all and your pain will only get worse. And it's really hard to relieve once that happens.

I know how difficult this illness can be. And trying to take care of 5 kids is hard enough for a healthy person. I know I keep saying this...but I can't stress this enough...try talking to your doctor and explaining EVERY thing you are dealing with...or find a new doctor FAST!

You could even try printing out the information on the left side of this page in the blue boxes....highlight all of your symptoms...and then take it in with you to show your doctor. Or just write out all your symptoms and show him that. Sometimes they need to see it in "black and white" to finally understand what you're going through.

I hope this information helps you. In the mean time...just know you can come on here and vent or whatever any time you want. we are always here to listen and offer up advice and suggestions. Take Care and let me know how you are doing...Stacey :o)

 

Stacey373 - August 30

By the way....have you had a blood test to check your Vitamin D levels? A lot of fibro sufferers have a Vitamin D deficiency and your doctor should prescribe you this vitamin. I take 50,000 IU of Vitamin D once a week.

I also take Vitamin B complex and Magnesium Oxide every day as suggested by my doctor. I just started taking these and I'm still not sure if they help or not...I'll have to wait and see!

Stacey :o)

 

inpainandirritated - August 30

Well Stacey it was really good to hear from someone. Reading chats on forums led me believe that I should be on something else, not just an anti-depressant. Hearing it from someone who knows how I feel just reinforces that feeling. I have been considering a change considering my docs choice of treatment is an anti-depressant, acupuncture, aerobic exercise (right!!!) and pressure point injections that I now know do not work for me...and not much else. So maybe the winds of change are a blowin...:)

 

Fantod - August 30

inpainandirritated - Welcome to the board!

I'm going to give you a crash course on Fibromyalgia (FMS) so that you have a better understanding of what is happening to your body.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation and the Centers for Disease Control and The World Health Organization. OTC remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

If you don't want to share this website with your husband, family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

A rheumatologist is the doctor best suited to help you manage your symptoms. There are now three prescribed medications to treat the pain of FMS. You have probably seen the ads on TV for Lyrica. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. That also includes Splenda. If you require a sweetener, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which can be found right alongside the other sweetners in any decent grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. If you find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

And finally, the National Fibromyalgia Association website has a list of fibro-friendly doctors available for quite a few states. Not all rheumatologists are created equal. If you feel that your current doctor is not addressing your needs, than get a second opinion. Be sure to take a copy of your medical record and current tests with you to save time and money.

I hope that my comments are helpful to you in some way. I'm not sure why you have to wait months for an antidepressant. I'd be fighting that tooth and nail as antidepressants is the class of drug most effective to treat FMS. Good luck and God Bless.

 

Fantod - August 30

Incidentally - as far as exercise goes, it is recommended for folks with FMS. But regular aerobics is going too far. You could do Tai Chi using a DVD at home,join a water aerobics class for arthitics or walk. Any of those options are kind of doable depending on your symptoms from day to day. Take care.

 

inpainandirritated - August 30

Hello Fantod...thx for the informative narrative.I have some knowledge but u have given me more. I am not waiting for an anti-depressant, I'm waiting for it to start working its been about a month since I have been on Effexor, prior to that Lyrica. I don't feel any difference in the amount of pain, and not a whole lot of difference in my mood. Still irritated (lol) and now even more restless/anxious and suffering from a broken thermastat...imagine chills in Summer. :) I thank you for your insight and your gracious welcome.

 

inpainandirritated - August 30

I also wanted to comment that I do take Calcium w/Vit D but thats only 1600 IUs daily and as for exercise I have joined a gym have been there twice and mainly do the treadmill with some light exercise for my abs and shoulders, so I am trying to get past the exhaustion and boost my attitude. i must say that during my time there I do not feel much pain but it does come back. Will have to see what happens during a flare. Also I have reached acceptance though not always with grace...but no pain no gain right?

 

Stacey373 - August 31

Hi Inpain - I've got to say that "pushing" yourself to exercise or to do anything else is a HUGE mistake. I know from experience that this will only make you feel worse in the end. Eventually our bodies just give out and you really don't want to push yourself to that point.

If I'm feeling fairly good, I will keep pushing myself just so I can get things done. Over the past few months, I am slowly learning not to do this and figuring out when to stop. But in the past, I would keep going because I knew it wouldn't last long and that I'd be in bed again and wouldn't get done whatever I was trying to do.

Pushing yourself even when you aren't feeling very good...that's probably worse than the other. With Fibro, we have to stop before we've gotten to the point that it's "too much". otherwise you will be hurting even more and you could go into a flare up that lasts for weeks or months.

I admit that I still over do it sometimes. I'm still trying to figure all of this out. But I know that since I've been not "over doing it", I am feeling so much better and get less flare ups and headaches.

As for exercising...each of us has to figure out how much we really can do without over doing it. What I've been doing is walking up and down my driveway. my driveway is about 1/4 mile long each way...so walking it a few times is enough for me. On the days that I'm doing a lot of other things...cleaning, shopping, etc...I figure that's enough "exercise" for the day and I don't walk my driveway.

Also, I'm pretty sure that if you've been on Effexor for a month and you're not seeing a difference...then I don't think it's going to work for you. I'm not sure how long it's supposed to take, but I always figure if a medication isn't making a difference after 2 weeks...then it's probably not going to work at all.

I apologize if I'm jumping all over the place and not making much sense. It's the first day of school and it's WAY TOO early to be up and trying to think! (But, yea! the kids are going back to school! LOL)

Anyways, I hope you seriously re-think all the exercising and stuff. Just remember to take it easy and "allow" yourself to take lots of breaks. Take Care, Stacey :o)

 

inpainandirritated - September 1

Hi Stacey, you sound like my husband who worries about me at the gym. LOL The treadmill doesn't feel bad and the pain that comes back isn't much worse than when I went in...luckily. I want to try but I know when I am too tired, which feels like all the time I can't push. I almost feel like I am lazy which is hard for me to take but then I have to remember what is really going on and just accept it. But it is nice getting out with g/f and away from the rugrats...lol ;)

 

rbccpeek - November 22

I too am newly diagnosed with FMS. I am on Lyrica and Cymbalta. I first experienced extreme relief in terms of the pain and overall achyness--however, I have experienced two episodes of EXTREME muscle spasms in my back. The first was my lower back, the next was my upper back. Even though it seems like I have tolerated back pain for quite some time...these two episodes were very different. They were--knock me dead type spasms. I read that Lyrica can sometimes cause this...I am wondering if anyone else has experienced this??? I have an appointment today to discuss with my Dr. and perhaps change to Savella, which also scares me in terms of some of the side effects I have heard/read about.

 

rudegirl771 - November 30

hi, I was diagnosed sept 10, I lso have herniated discs in my neck and lower back. I am on 60mg of prozac and 50mg of armytriptaline althogh this may be getting increased. I was on oxycodin for my back and this was stopped when the fibro was diagnosed. I am in more pain but feel better as the oxycodin where hideous. I live in Scotland so I guess drugs and treatment are differnet worldwide. I am getting a better sleep on the armytriptaline, still wake up and have leg jerking but it better. I hope this has been some help to you. kind regards denise

 

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