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New to Fibro and Need some Help
13 Replies
somewhat_damaged - December 28

Hello all, it's so nice to find a forum where I can find other people going through the same things. I am 28 y/o, and I have spent the last ten years of my life going from doctor to doctor trying to get a diagnosis. I have seen oncologist, had bone marrow biopsies, been told I had Lupus, and started on Plaquinil (just to find out it's NOT Lupus, and finally given a diagnosis of Fibromyalgia last year. They say it's a severe case as well.

I guess I struggled with not believing it for a while, and now finally am accepting it. I just recently had a invasive knee surgery, and since then have been miserable. Horrible calf cramps, feel almost like charlie horses (they thought I had a blood clot it was so bad, but the US was neg.), my arms are killing me, they feel bruised from the crutches, I'm tired all the time, sore all over, and I'm going a bit crazy.

It also seemed that my recovery time and pain level was much more than usual patients. And I have been struggling, because I don't think people believe what I'm going through. I hear that it's because I'm not working hard enough to recover, etc. or that the pain is in my head.

So my Q's are:
-Can fibro be triggered or worsened by surgery
-is the excess pain I'm feeling, muscles, etc. sound like it could be the Fibro?
-Anyone else have family that don't take Fibro seriously? My mom just dismisses it as a catch all diagnosis, and more in patients heads.
Anything I can to help people understand?

Please help!

 

somewhat_damaged - December 28

Oh also forgot to mention I also have this terrible, burning pain that seems to go from butt all the way down to my feet. Can't seem to walk around for very long without feeling like I just want to collapse from the pain and weakness in my legs and back.

 

Fantod - December 28

Hello and welcome to the forum!

Yes, surgery can trigger more issues with Fibreomyalgia (FMS). There are actual surgical quidelines recommended for people with FMS. I know this because I just had bilateral foot surgery at the end of October. The trick is to avoid putting the central nervous system which is already on overload in a more (if that is possible) hyper state. The area of the incision should have been injected with lidocaine or a long acting drug that is similar PRIOR to the incision being made. Once the repairs have been affected, add more local anthestetic and close. Your arms should never be extended away from your body during a surgical procedure because this aggravates FMS. And, a soft neck collar should be worn. FMS surgical patients routinely require more medication and a longer recovery time.

What you are experiencing is probably a combination of backlash from surgery and FMS combined. It sounds like your FMS symptoms are not well controlled in the first place. Nothing like adding kerosene to an already raging fire. I had a terrible time once I came off of Darvon. I spent a couple of days curled up in a ball praying someone would just kill me. In retrospect, I should have been gradually weaned off of Darvon to make a more tolerable transition. Next time, I'll know having learned the hard way.

I would recommend that you get s bottle of Malic Acid tablets from the nearest decent health food store. This really helps with muscle cramps and twitching. I usually take 825 mg a day. Make sure you understand how to take this homeopathic remedy and any risks associated with it. Malic acid helps quite a bit. While you are at the health food store, also pick up a tube of Arnica gel. This is like a sports rub but it helps with bruising and swelling too. NEVER put it on an open wound. This should help with your arms and around the incision site.

As for your family members - this is par for the course. FMS is recognised by the National Arthitis Foundation and the Center for Disease Control. The better educated you are on the subject the better you will be able to deflect those types of comments. Knoweldge is power There is excellent information on this site in the blue boxes on the lefthand side of this page. I'd also recomment that you order the "Fibromyalgia for Dummies" book and share it once you have finished reading it.

The pain you are describing in your butt and legs is probably nerve pain also one of the "perks" of FMS. I have it myself but it is associated with degenerative disc disease in my case. In either case, Gabapentin, is prescribed to address this problem.

When it is convenient, why don't you give us some more information on who treats you (type of doctor) and medication so we can make some more suggestions to help you. Take care and God Bless.

 

somewhat_damaged - December 28

Thank you so much for answering some of my q's. I really appreciate it. I have been seeing a rheumatologist for about 4 years now, but when I first started, I only had crappy insurance, and had to be seen in a "clinic" setting, which meant that I saw 5 diff docs, that never seemed to remember anything about me, when I got there. Now I have better insurance, and am seeing my fav. of the docs,an and don't have to go to the clinic.

Frankly, I stopped going to docs for a long time...I just got tired of never getting answers. But I learned that I need to be more aggressive, and not just give up. So I'm back on the band wagon. His office is actually one of the ones who are the front runners in fibro education in the area.

My next appt. is on the 8th of Jan. and we'll be discussing everything I have been going through lately.

I wish I had known about the surgery stuff before I went under the knife. I guess I can only blame myself. They did give me a femoral block and a sciatic block before hand, not sure if that matters. I had a Tibial Tubercle transfer in which they basically broke my tibia and realigned my leg so my knee cap would stay in place, and I have an 8 inch incision below my knee.

I have some DDD as well, and a disk problem in C6-C7 causing a pinched nerve that makes my right arm go numb sometimes, so I feel your pain.

Will check out that supplement and will absolutely go grab that book, I refuse to add to my own problems anymore. I guess I just got overwhelmed.

Between the fatigue, lack of sleep, and chronic pain, I just always feel like I should be 80 instead of 28. And my families reaction and lack of support has been hard.

Thanks again, this forum is a godsend!

 

somewhat_damaged - December 28

Oh and no meds right now, except Ibuprofen 800 and occasionally Vicodin 7.5 mgs. Unfortunately I have bad sensitivity to meds and they make me feel goofy and dizzy. Will be discussing more treatment options on the next appt.

 

Fantod - December 28

Ok - now I have a little more time so I am going to give me my mini not so famous lecture on Fibromyalgia (FMS).

Fibromyalgia is a disorder of the central nervous system which causes widespread chronic pain. There is no cure but it can be managed with certain classes of prescribed medication. FMS does not respond to OTC remedies such as Ibuprofen etc. You are wasting your money and probably tearing up your stomach and liver using large quantities of Tylenol etc.

There are now three primary medications used to treat FMS. Lyrica is advertised on TV all of the time. The most common side effect seems to be rapid weight gain. Another option is Cymbalata which addresses both the pain and depression that usually accompanies FMS. I use it myself in a very low dose as I am extrememly sensitive to medication. The newest drug in the FMS arsenal is Savella. It has been used in Europe for decades as was approved for use in the USA earlier this year. Most rheumotologists seem to have fre trial packs for patients to try prior to filling a script.

The reason that you are so sore and achey is due to a lack of restorarive 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 days activities. No deep sleep means higher levels of muscle pain which rapidly becomes a vicious circle. Amitriptyline is usually prescribed for this issue. I also use 1 mg of Melatonin (health food store again). You can experiment with Melatonin when you have nothing to do the next day. Try 1 mg and if that doesn't do it, the next time go to two mg. Three is the limit and make sure you understand how to use Melatonin and any risks associated with it.

Diet is very important with FMS. Eat smaller high protein meals throughout the day. If you use ANYTHING with an artifical sweetner including Splenda - get rid of it. Deep fried foods and luch meat (nitrates) should also be avoided as all of these items will probably ratchet your pain level up. If you require an artifical sweetner, try Truvia or Sun Crystals which are made with the nontoxic Stevia plant. You can find these items in any grocery store right along side Sweet & Low etc.

I am extremely sensitive to medication and sometimes rely on a compound pharmacy to make a standard dose of medication into an increment I am more likely to tolerate. There are compound pharmacies everywhere. If you are concerned about medication doseage, discuss this option with your rheumy. If one is not convenient to your home, the script can be faxed and the medication mailed to you.

A nifty solution for localized pain is the Flector Pain Patch. This patch is not an opiod and does not get into your bloodstream. It only works where it is applied. It will not make you drowsy or goofy. I use it for my lower back issues as well as any areas that are consistently troublesome from FMS. You can cut these up to make them go longer too.

You should be tested for a Vitamin D deficiency which seems to be common in people with FMS. This is done with bloodwork. You might also want to consider being tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be sensitive to gluten but not enough to cause full blown celiac disease. Both of these issues will also cause widespread, chronic pain.

You might want to ask the rheumy about injecting any spots that are consistently cramping and knotting (trigger points) with a pain killer to break the pain cycle. The longer a chronic pain cycle goes on, the harder it is to stop or manage.
If you think that this might be an option, take a cold pack with you and have someone else drive. I've had it done and it was not the most comfortable procedure. But, once I got over the injections (about a week) it did break the pain cycle and I was a lot more comfortable.

Family dynamics are tough when dealing with FMS. If you had an obvious problem like a halo due to a broken neck sympathy would abound. You have to be your own best advocate and learn to say "no." Mean it and not feel guilty about it. You might want to go to the National Arthitis Foundation website and use the "search" function to locate the section on FMS. Send people a link in an effort to educate them. Take your mother to your appointment in January so she can hear for herself thar you are really suffering and what the doctor has to say about your situation. And finally, be grateful for anything that you can do no matter how piddling. Don't dwell on the things you can no longer manage - it is not productive and may increase your pain level. Good luck and let us know how you do with your up coming appointment.

 

somewhat_damaged - December 28

Thanks again for the post, all the info is appreciated. I was on meds before for sleep problems, and in hindsight, I did seem to feel better during that time frame. I never had insomnia or anything, just never felt rested and never seemed to sleep "deep". I have bad dreams all the time and wake feeling as tired as I did before I went to bed. So your info explains that part. Will talk to the doc about getting a prescription.

I think I can handle the injections, because I frequently get steroid injections in my joints for my osteoarthritis. I know they suck, but I always feel so much better after wards.

As for gluten sensitivity, it was something I intended to talk to my doc about anyway, because of the IBS type stuff I suffer. It's awful and recently I learned that gluten sensitivity can cause the same thing. Good idea.

Thanks for encouragement, I will be thankful, as I know there are people out there who have it much worse. I will take all your suggestions to heart, and will keep everyone updated after the appt. Thanks!!!

 

Fantod - December 28

Sorry, but steroid injections on a frequent basis are a big no-no. Long term cortisone use causes tissue damage and is not recommended more than once a year. I have advanced OA in both knees. I would would be extremely reluctant to use cortisone more than once. There are lubricants that can be injected to ease the joint motion. The latter would be be my first choice.

I was given Sarapin injections which is a very effective pain killer. Sarapin is a derivative of the pitcher plant and does NOT cause tissue damage. It can be used regularly with no side effects. I had no lower back pain for about 6 months after having my tigger points injected. My rheumotologist uses it in his practice. You can find information about it online. There is no inflammation associated with FMS so cortisone is not an appropriate remedy for trigger points. Take care.

 

Fantod - December 28

And last but certainly not least, steroids are really bad for the immune system. As an FMS patient, I would not use or take steroids for any length of time as our immune systems are already badly damaged and do not need any additional stressors. Take care.

 

somewhat_damaged - December 28

The steroid injections are for the OA, and they limit the injections to 3 a year, although I never get more than 2 a year ( 1 in the joint, the other just in my butt). I did not know, that more than once a year was not recommended. My Rheumy always said no more than 3.

I will ask about the Lubricant, I never even knew that existed. It's a shame when you can learn more from a forum than from your Dr. lol

 

Deberly - December 29

I have help, doctors and info...too much detail to go over if you don't live close by. If you live in Texas (Dallas or Austin) I have doctors for you. I have SEVER Fibro (year 12 with diag. year 8 with it taking me to my knees) I can tell you I have DONE IT ALL and have doctors that are AMAZING and some not on the "normal line" Feel free to contact me If you live around this area. IF not..I will give you all the best info I have. Good Luck!

 

Deberly - December 29

EVERYONE look into the medication Metanx. It is a methlyated B vitamin (basically it is already in the form that your body needs it to work and NO over the counter stuff at the health food store will not work at all). Get your doctor to write you a RX....try a 90 day supply (cheaper and look for coupons on site). Basically...I am starting to get my life back with this and a RX D vitamin and a routine of antiviral meds (famvir/vlatrex) None of these MEDS are used for their RX reasons.....but they are the "combination" that is getting my life from 80% bedridden to 75% well in only 6 months! Diet is a key issue....NO artifical sugars (aspretame bad, evil) only use Sugar, Stevia or Sweet n low (if you have to have one its the best of the bad lot). No more BREAD....yeast is another issue for most fibro people....Read "The SCHWARBEIN Principle" and follow it!!!! I cut out sugar, bread, beans, rice, pasta, potatos, etc....lost 75lbs in 6 months and do YOGA or Thai Chi or anyform of stretching exercise for 20-30 min a day (yes even when you think you can't you MUST) Anything to keep the lactic acid from building up in the muscles helps amazingly!!! Stay AWAY from RX pain meds...that is a trail that you NEVER want to start. Finally see in you can find a Alphabiotic treatment person near you.....I promise it will change your body for the better. Anyone wanting more info....happy to help! Good luck and God Bless each one of you....I pray that you have the family support I do and if not find a support group.....you will NEED THEM!!!!!

 

Fantod - December 29

somewhat_damaged -

My point exactly! Just because someone is standing in front of you wearing a white coat that says "physician" on the front of it doesn't mean they are thinking about you as an individual. I don't suppose anyone told you that subsequent injections of cortisone may be less effective on your knees either. Ask them about Synvisc which is an injectable lubricant.

No one and especially anyone with an auto-immune disease (FMS) should use any steroid like cortisone or prednisone unless it is absolutely dire and then for the shortest amount of time possible. Steriods compromise the immune system and can cause plenty of other problems for people like us.

Never take what any doctor is telling you at face value. Research it, get a second opinion or a third if needed and be your own best advocate especially when it comes to FMS. Take care.

 

Awesome1 - December 30

Believe it or not, I was suffering from this problem for a long time (over 5 years). It was always occurring in the shoulder blade area. Within 48hrs I would get a headache; severe headache. The pain was worse than a migraine. I would get nauseated, and couldn't sleep well. Headaches pills were the first thing I took, and I was lucky if I could sleep it off.

What was irritating is that the doctors I used to see couldn't accurately pinpoint the problem. Whenever I said that it tends to occur after working out, they would say, "Did you stretch?" And what do I get for the problem? Pain killers.

Do you think it went away? Yes, briefly. But month after month I was always getting the same nasty pain. Sometimes I couldn't differentiate muscle strain and muscle pain. It was confusing, and I had to ask for a massage every month. Yeah...the tension was relieved but the pain, still lingering.

Then, during March 2009 I was told to take Mirac. I was sort of skeptical but I was fortunate to get some supporting documents. After getting some insights about the medication and where it is applied, I thought to myself, "why not give it a try".

Like I said, you wouldn't believe me. It is almost the end of the year and I am as normal as can be, and more excited to share the excitement.

Here is what we are all missing. The compounds found in this medication are all natural but, is pharmaceutically graded. FDA would rather control this medication so that we all get the other types; you know what I mean.

Right now, I will stand my ground and challenge any "Tom, Dick, & Harry" who thinks this is bogus.

I have read a lot of information about FM and no one seem to have an explanation as to the cause. However, even if I point out the cause to anyone, would the person be willing to acquire this medication?

We all want a cure but I will not tell you that it cures because there are too many of us out there who are sue-happy. What I will tell you is that this medication abates the cause of FM at the source.

If you think about it, FM, RA, & SLE seem to be a major complaint. When doctors find FM in you, there is usually a RA or a SLE problem diagnosed as well. If one is to put a stop at the source, what are the chances that it will put stop on RA & SLE (considered as autoimmune diseases)?

So, there you go. You're only 28 but feeling 80 yrs, what is your next step? By the way, 6 hrs of sleep will not rid of FM. If we’re talking about muscle recuperation after working out, it would make sense.

What we really need is an autoimmune solution revolution.

 

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