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Fibromyalgia

Oct 14, 2015 7:29 PM

Hello. New to the forum. Old to the app.

I was told today that, in addition to wide spread arthritis, I have fibromyalgia as well. It was a late afternoon discussion, so I did not engage in much discussion. That said, any pragmatic thoughts/pointed commentary on my very recent discovery?

Oct 14, 2015 7:39 PM

How do you feel about this diagnosis? It is certainly unfortunate that on top of widespread arthritis you also have Fibro. I'm very sorry you're going through this. ✌️

Oct 14, 2015 7:45 PM

Interesting question. I accustomed to pain over mission sustainmenr for the purpose of infil/rsoi but not why we are discussing.

Oct 14, 2015 8:01 PM

Bll I am so sorry. I too have fibromyalgia and it is a very long roller coaster ride with no real end. There are many medications out there now that help many people with fibromyalgia. Lyrica, Cymbalta, and Savella, are some I have tried. I personally did not get a chance to get relief because I have severe chemical intolerance and these medications gave me terrible side effects. Do not get discouraged by my experience though as I seem to be a special case. I have heard many people do get great relief from any one of these. Try to find others with this illness because noone can understand it unless that have dealt with it. My husband calls it roving pain because from one day to the next I never know where my pain will be the worst. Some days, most days actually, my skin hurts. I also have herniated disks so I always have back pain and never pain in my legs and feet. The other fibro symptoms I have are difficulty sleeping, sensitivity to heat and cold, sensory issues, noises too loud, lights too bright, sweating profusely when I am not that hot, worse at night. Severe fatigue, mood swings, fibro fog, or difficulty concentrating, memory problems. Morning stiffness and stiffness if I sit or stand in one position too long. I could go on, but cannot think of them all at the moment. Having a bad day today.

One major suggestion I have is start walking if you can. Ten minutes at a time to start and work up from there. It helps to stay mobile. Reduces stiffness. It is the only real exercise I can do. Make sure you invest in good walking shoes.

If you have any other questions I will be happy to answer them. I hope that now that you have a diagnosis you can work towards coping and pain management. It took six plus years to get diagnosed. Some doctors do not believe in fibro. Find a good one that does and is willing to keep up with all the newest research. Do research for yourself. Advocate for yourself. I hope you are able to find some relief. Gentle hugs.

Oct 14, 2015 8:16 PM

I find the entire thing a bit overwhelming. Heavily physically active all adult life:ball special Army schools, 30 yrs none-stop. Other situations and scars, but walked out end of the day. Now, serious roadblock. Just need to seriously reconsider what makes us, as humans, productive. Head spinning...need an aperitif πŸ˜€

Oct 14, 2015 8:21 PM

Pain management For my generation was "take a Motrin and stretch better in the morning". No argument when I was 21. 32 added a unique perspective. Most of our 25+ yr vets, we come from a different DoD philosophy.

Oct 14, 2015 8:23 PM

I equate it to old school coal miners..

Ok. No harm meant if taken. Shutting up now.

Oct 14, 2015 8:27 PM

Well Bll stretching better in the morning is still good advice. Before I ever get out of bed I do gentle stretches of my entire body. However, you may need a bit more than that these days. Motrin is still good since it is an anti-inflammatory. Give yourself a few days for this to sink in and do some reading on the subject. With that kind of background you were bound to have some added pain with age.

Oct 14, 2015 8:30 PM

What!!! Age related pain!!! ;-). Just whining a bit. You are right. Life will go on.. Thanks

Oct 14, 2015 8:48 PM

Yep. I did a lot of damage to myself over the years too. Pushing my physical limits. I always had something to prove because I was 5 ft 4 inches tall and a tomboy. I was repeatedly warned I would eventually pay for it. They were right.

Oct 14, 2015 8:58 PM

I just went from an"nothing is wrong with me" to this almost overnight... Again, just a whine. But we'll be good to go!

Oct 14, 2015 8:59 PM

That said, if this stuff doesn't get fixed, BY GOD I will be back with a venue nice !!! 😁😁😁

Oct 15, 2015 1:22 AM

The pain does tend to put one in ones place, though, doesn't it? A great equalizer of sorts.

Oct 15, 2015 3:00 AM

Sorry it happened that way. Mine was more gradual. I went from nothing is wrong with me to everything is wrong with me over years. But I still put on a brave face and try to keep on living.

Oct 15, 2015 12:22 PM

Bll, welcome. I also have osteoarthritis with fibro, along with DDD, TMJD, bulging & torn discs, osteopenia, hypothyroidism and sjogrens, and many more. I do the morning bed stretches, pre & post exercise stretches, and a 10 minute walk on a treadmill, 1-3x a at, 3-4 days a week, which Saphire380 mentioned. I don't over-do my limits. I pace myself at everything I do, with frequent breaks. If I'm feeling bad I skip the exercise. If I need rest for days, I do it. I'm 53 and feel 63+...Lol. I'm totally deconditioned and every new diagnosis creates more challenge. I'm asthmatic and both allergy and overexertion can trigger my asthma.

Educating yourself on fibro will help you. Here are some sites, not doing the "www" because they'll run together:

Fmnetnews.com


butyoudontlooksick.com


living-smater-with-fibromyalgia.com

I wish you all the best. Coming to acceptance is probably one of the toughest hurdles. I stopped working in 2010 for surgery (5 in 1). I was dx with fibro in 2012 (started symptoms 07-08). Now many other issues jumped on board, but I only accepted it atop last year. I won't work again, and my lifestyle is forever changed. But my life isn't over because I refuse to let my issues defeat me. I may stumble and fall, but I won't stay down. My faith is my lifeline of strength and endurance. You'll be in my thoughts and prayers. Thank you for your sacrifice, and God bless. πŸ™πŸŒΌ

Oct 15, 2015 1:04 PM

Apologies for the rant last night. I know it is hardly the end of the world, but the the wind got knocked out of my sails for a bit. Shan't happen again.

Oct 15, 2015 1:26 PM

Don't apologize Bll. We all need to rant now and then to relieve stress. You got a blow and need to catch your breath. It's OK. You've got to figure out what's the best method of coping for you. We are all different and what works for one may hurt another. Just know that you don't have to travel that road alone... We're all here to help you along. (((Hugs))) πŸ™πŸŒΌ

Oct 15, 2015 1:29 PM

I agree with FlappysLady81. You have to get it out sometimes. No need to apologize here.

Oct 15, 2015 4:12 PM

I agree, we all need to process. We're here for you whenever you need to talk. No need to apologize my friend. πŸ˜€

Oct 15, 2015 7:26 PM

Any stories about Savell? I was on Cymblata for about 2 yrs; didn't work and the withdrawals were heinous (!!!). Now Savella. I trust the doc, but it appears I may be heading down the same road. Thoughts?

Oct 15, 2015 7:40 PM

Ive never tried Savella, Cymbalta was not for me and your right. Withdrawals are heinous. Do some research if you can in this new med.

Oct 15, 2015 8:35 PM

3d med approved by FDA for Fibro. Started today. Advisories of nausea are well warranted. Joy. Should take two weeks to achieve advertised results.

Oct 15, 2015 9:30 PM

I suggest if you get no results within suggested time, two weeks, do not continue. No reason to subject your liver to it long term, or yourself to the side effects and withdrawals. Worst nausea I ever had was on savella, but I am super sensitive. Also, if the nausea does not begin to subside over time I do not suggest staying on it unless you are getting good pain relief. The only drug I have been willing to stay on with nausea was fentanyl patch, because of the amazing pain relief I actually received.

Oct 15, 2015 9:54 PM

Thanks much!

Oct 15, 2015 9:59 PM

I do hope that you have good results with it and that the nausea subsides quickly. I actually had severe nausea for 4 months with fentanyl and lost 40 lbs. I stayed with it because I had barely been able to get out of bed for two years and suddenly I could get up and down and instead of living at a 10 on the pain scale, I was quickly at a 6, which was huge for me. Good luck.

Oct 16, 2015 11:57 AM

Hi Saphire380, I was going to post asking about fentanyl patch. Yesterday my doctor switched me from 4 Norco per day to 25mcg or 50 if needed. I put the first one on and within a short period of time I had a splitting headache and my pain level had not gone down. I put a second patch on and my headache got worse, I did get some relief from the pain, not much but some is better than none. I started having a really dry mouth and couldn't get enough to drink. Feel like my heart was beating in my ears, dizzy and I was never able to lay down and sleep last night due to headache. Did you have side effects like this when you first started taking it? I called and left a message for my doctor. Waiting for a call back. I took my bp and it was 142/93. I took the patches off and took 4 ibuprofen and my headache got better. I'm also very sensitive to medications. I couldn't stay on Morphine, oxycodone or OxyContin. They all cause worse muscle tension in my upper back, neck and jaw. I cannot take soma because I have a very bad reaction to it. The only medication I've had good results from is Norco. Are these side effects normal and will they possibly dissipate with time? I just feel like for the amount of relief I did get along with these other yucky side effects it hardly seems worth it to me? Thank you and sorry for barging in.

Oct 16, 2015 12:20 PM

Bll yes I did have headaches at first with fentanyl it went along with the nausea and vomiting. My doctor tried to start me at 50 mcg and I convinced him 25 was better. After a few days I believe I actually went down to 12.5. I have always wanted to be on the lowest dosage possible. I am surprised you got that affect so quickly. It should take 13 to 17 hrs to get in your system and up to 17 to get back out of your system. Could the headache have been withdrawal from the Norco? I would definitely not go up to 50 that quickly. I rarely ever have a headache these days and I am up to 100 mcg. I occasionally get nauseated, but not severe. Over the 3 or 4 years I have been on it I ramped up very slowly starting at 12, then 25, then a 25 and 12.5, then 50, then 75, then 100. Those first few months were very tough. Maybe try the 25 with Norco for breakthrough. I took Norco for breakthrough up to the 50 mcg then 30 mg morphine 3 times a day and when my insurance changed I went to the oxycodone. No tylenol or ibuprofen for me anymore because of my GERD and hiatus hernia. I am not saying fentanyl will work for you but if it does it is much easier on the stomach. You can take ibuprofen with fentanyl if it helps with the headache. Definitely keep an eye on blood pressure. Good luck. This is a hard road getting meds right and it probably will not get rid of your pain 100%, but too much can quickly make matters worse. I hope this helps.

Oct 16, 2015 12:22 PM

Create a post about fentanyl patch. I'm sure I am not the only one here that has used it.

Oct 16, 2015 12:33 PM

Bll I have been on Savella 50 mg 2 x day for about 4 years now. For me it was a life savior.. I had been on Gabapentin for about 4-5 years for nerve pain I thought that it took care of all the nerve pain thru out my body. But I was wrong only the upper body nerve pain, and I needed something for the lower nerve pain, it was amazing the relief I got to be able to once again climb in and out of our ram 1500 and ride all day. With minumal pain . Don't get me wrong ,I still hurt but I'm able to pay bills, and grocery shop easier than before taking the Savella. My insurance doesn't carry it on their formulary list they carry Lyrica and for ed me to take it for 3 months it did nothing for me like taking Tylenol. So every year my Dr has to fight with them to pay for it. I also take Fentonyl patches 50 mg. which has helped tremendously I still have a 6-9 pain level it depends on where all I am hurtin. I believe that I have had Fibro since the mid 70's when I got a 3 degree sunburn with the blisters staying inside. Since then I have had pain all over my body, and pain full when anyone would touch me. I was finally dx in 2003. I take 800 mg 4 x day of Gabapentin, and Hydrocodn / Acetaminophen 325 / 7.5 every 6 hrs as needed for pain. My Neuro recently put me on Cymbalta at bedtime and it has helped me rest at night. My PCP told me to keep a close check on my blood pressure because it could cause me to have strokes due to too much Serotonin with the Savella, I stopped taking the Cymbalta.

Oct 16, 2015 6:35 PM

Let me digest. On Gabaprentin now for exactness same reason with confused results. The whole Fibro thing is confusing for me right now; quite controversial.

Oct 16, 2015 6:52 PM

Be very careful with Gabapentin. If you decide to stop taking it at any point make sure you ween yourself off. It is not a drug that should be stopped cold turkey.

Oct 17, 2015 5:45 AM

Interestingly, I wastoldmto take GABA and Savella together. Thoughts?

Oct 17, 2015 5:56 AM

No advice. I was not able to take either savella or Gabapentin. Savella gave me such severe nausea I was vomiting blood. Then when I complained I was told I was being uncooperative. Gabapentin immediately gave me Parkinson type tremors and I was told that was a side effect that indicated severe intolerance to the drug and to stop taking it immediately.

Oct 17, 2015 5:57 AM

Bll, first I would like to welcome you to our community family. As you can see, when you need help, everyone comes running!! I'm glad you decided to check in with the group. It is an invaluable resource for information, support and advice. I have been in pain for 22 years, had 29 surgeries and have been diagnosed with around a dozen (and counting) diseases that cause horrible pain. I have DDD, DJD, Cervical Spondalytic Myelopathy, Fibromyalgia, RSD/CRPS, LongThoracic Nerve Palsy, Bilateral Valgus Deformities of the knees, sciatica, scoliosis, SI Joint Disfunction with fractures. Among others I can't remember right now. It is hard to get a diagnosis and wrap your head around it immediately. I know I have arthritis from old injuries (getting dumped off of horses, playing football, falling out of trees, etc.) it would sure be nice if we could go to Target or Walmart and just order new parts but, alas, no such luck.. LOL!!! I hope you find the information and support you need. Keep up posted as to how you are doing. I wish you all the very best and you'll be in my prayers. πŸŒ»πŸ™πŸ»

Oct 17, 2015 6:07 AM

Thanks much! I had a headache once...then this 😁. Just kidding... The whole concept of chronic pain and the apparent "dial a solution" approach is fascinating to me. I thought (mistake) we would have been beyond that considering the numbers who suffer.

Oct 17, 2015 6:15 AM

Bll it is great to see you still have a sense of humor. I truly believe that those of us in chronic pain need to keep our sense of humor alive more than most.

Oct 17, 2015 6:20 AM

I hear you... Unfortunately, it's not the case. I hope that your doctors find something that eases your symptoms. Try to keep a pain diary so you can recognize what your triggers are and what makes you better or worse. Unfortunately with Fibro it's so hard to keep track of the pain because many times it changes and moves to other places or stays where it is and then there are added places it shows up. It's different for everyone. Also, there are days you may feel "foggy" and not be able to concentrate or remember things. That's normal and affectionately known as "Fibro fog". Some don't get it, others do. It's all a guessing game sometimes and very frustrating at the same time. Glad you're here and I look forward to getting to know you.😊

Oct 17, 2015 6:21 AM

I have heard of this "fog" a few times. Any insight on that?

Oct 17, 2015 6:33 AM

The fog is very frustrating. I forget names and words constantly. Commonly I will be talking and completely use the wrong words. Also if I am talking and get interrupted or distracted I will completely lose track of what I was talking about. It makes me feel stupid, but I am sure it is different for everyone. Difficulty focusing is common. One of the reasons why it is great to make lists when going to the doctor or pretty much anywhere.

Oct 17, 2015 6:35 AM

Very interesting. I started using lists for doc visits a few months ago... Thanks much for the insight!

Oct 18, 2015 11:41 AM

So, day four building up to prescribed dosage of the Savella. Very annoying nausea. Common result?

Oct 18, 2015 12:46 PM

Hi Bill, I tried Savella several years ago but had nausea and weird dream disturbed sleep. My doc stopped it right away. Unfortunately those kind of meds have a start up period, different for everyone but it usually takes a couple weeks to tell. Four days is pretty new but if it stays that annoying you can always talk to the doc and see about trying something else. It can be painstaking but hopefully you'll land on something tolerable and pain relieving. Good luck, maybe you can drink some seltzer water or peppermint tea and something soothing for the gut--sometimes a little food helps with the nausea from meds.

Oct 27, 2015 11:43 PM

Hey howdy!! Made the decision to stop the Savella as my reactions to it were worse than Cymbalta and had not even reached the full dosage yet. Not dealing with that again. Breakfast is now x-number of Gabaprentin (dull the edge) and a few Percoset. But no more Cumbalta, Savella, or Lyrica. Meeting with a naturopath in a few weeks. Hurts like hell with no chemical suppressant, but at least I am not sleeping all weekend and can remember where I left my shoes...

Oct 28, 2015 9:18 PM

That's good Bll. I wish you the best with the naturopathic doctor! πŸ™πŸŒΌ

Oct 31, 2015 8:33 AM

Fatigue is getting worse. Pain incrementally increases daily. No more Cymbalta, Savella, Lyrica. Effects are worse than the pain. Gabapentin and Percoset tondull. Nothing else. Sleep apnea assessment in 2 weeks, followed by Neuro exam, then naturopath. Interesting set of circumstances.

Oct 31, 2015 11:16 AM

Bll, I am so sorry that you're worsening. It is always hard to deal with when symptoms get worse. Then, to be so sleep deprived at the same time is even harder. I hope that you can meditate, use aroma therapy, do some deep breathing exercises or try to concentrate on something that brings you great joy and peace. Perhaps then you'll be able to rest. Sending you gentle {{{Hugs}}} and prayers that you are able to find some relief and get some rest while waiting for your appointment.πŸŒ»πŸ™πŸ»

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