Suzyq, is your dog a service dog? And how did you go about getting one? I am trying to look into myself. I think it would be a benefit for me.
Kim
Hi Kim. I'm sorry to hear of your fibro and now the broken toe. Like you, I am on Lyrica. Aside from Ibuprofin, I couldn't find anything else to help with the fibro pain,and mu doctor tried me on a bunch of different things.
However, perhaps your method of weaning of the Lyrica could use fine tuning. Lyrica is one of those drugs that you have to titrate off of - that means come off slowly, by taking a full dose, then reducing it slightly, then after several days, reducing it slightly more, etc. And you might have to return to a full dose for a bit then try again. Don't do it cold turkey!!! You might suffer some extreme reactions if you get off quickly.
I sometimes use over the counter pain patches (Salon Pas) for some quick relief. They sometimes help, sometimes not.
I hope you can find something to make you more comfortable right now because I imagine that your pain must be very intense.
Hugs,
Petunia
Hello…I’m sorry u are going through so much on top of ur other issues…I was on lyrica for a few month had to wean off due to the severdepression it cave me…well I real just went cold turkey tho I’m sure that is not for everyone. I don’t remember much issues getting off except the depression…and that went away after a few months…tramadol does work for me but the doctor advised taking 2 /50mg pills at a time…also norco 10mg pills when needed…other than that just try to refocus from the pain…I have tried this new pill called buspirone and that has helped me feel more normal and able to deal with the pain better. I have been off work over 3 yrs so I get where u r at…I hope ur other issues get better fast so u have less to focus on. Lots of hugs to u.
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Thank you,
Petunia
Yes, I have read in several medical articles that tumeric is good for reducing inflammation. And that magnesium is good for muscle spasms. That's great advice, chammy.
chammy said:
Hi Kim,
Just like Barbie just said, everyone is giving good advice. I am just like Barbie as I get worse during my cycle also and I have not had a period in more than 7 years, just something our bodies remember. I do not use any medications other than valium 5 mg when I get really bad. I use magnesium oil three times a day (really helps muscle spasms and calms you down also ) I also use turmeric (all natural anti inflammatory). I have been able to increase my exercise (walking) to about 35-40 minutes a day (that really helps, even though it hurts too). Let your foot heal before you do anything, and just remember that we are all sending good thoughts and prayers your way. You will have better days coming. Gentle hugs
For service dog info:
http://k94life.org/programs/servicedog/
Oh, heck, we have a group here at Ben's Friends for this very topic! Just go up to the Fibro banner, then skip down a line to the fibro tool bar. You will find "Groups" and it will be listed under there, once you double click on "Groups."
schmoots2 said:
Suzyq, is your dog a service dog? And how did you go about getting one? I am trying to look into myself. I think it would be a benefit for me.
Kim
Just discussing this very thing with several others on another discussion group. If you would like I can add you…just friended you
I hate hearing you at having so much difficultly…I’m a work in progress myself. I never tried Lyrica, because of all the side effects. They had me on Neurontin, but it really effected my stomach in a bad way. Besides the constant widespread pain, Fibro keeps me nauseated and throwing up, almost every day. My pain Dr has me on Nucynta ER and Meloxicam 2 x day. Both seem to help. I still have pain, most days it’s a level of 3-4. But, once in awhile it’s really bad and I have to take my Tramadol or even Hydrocodone and Flexeril. I’m also in Physical therapy. I really hope you can find some relief. Depression is a real issue, I think with most of us…I would really encourage you speaking to a pain therapist. Good luck!
Hi, Kim.
I had to stop Lyrica after a couple of weeks due to vision blurring, so can't answer the calf issue. I stopped taking Cymbalta due to weight gain, but that was about 35% effective for me in reducing overall pain, in addition to brain fog. Allergic to NSAIDS, I cope with 20 years of chronic pain with heating pads, hot soaks with Epsom salts, ice, massages, limiting alcohol, incorporating green-based anti-inflammatories into my diet, and becoming a workaholic, which takes my mind off the pain. I recently bought a Spoonk acupressure mat that really appears to work! Like massage, it's painful at first, but reduces my pain for awhile.
As for your foot, your doctor likely recommended elevation and ice, right? That helped me when I had a similar injury. My foot was fractured at the base of two broken toes. My husband broke his little toe at work last week and luckily had 4 days off to recuperate. Messed up our road trip, but he needed the rest anyway. Aspirin, elevation and wearing Tevo sandals helped him immensely.
About to start getting acupuncture, at the advice of my new doctor, a Physiatrist. My first visit was yesterday. He prescribed the new release of Horizant, which, in simplistic terms, is an 'extended release' version of Gabapentin. He suggested Neurontin/Gabapentin may not have worked for me in the past because it doesn't absorb well. I took one 600mg tablet last night and didn't noticed any pain decrease today. He told me to take two tablets if one didn't produce results after a few days. I'll check back in after the 10 day trial.
I have to give props to the new doc, Paul Paily, at the Baylor College of Medicine in Houston, TX, after only one visit. He did things I've never seen a doctor do - personally interviewed me and entered all details into a laptop for an hour AND he personally called me last night at 6:30pm to discuss x-ray results for a knee problem.
Also, I was born with Poland's Syndrome, which he was not familiar with (most doctors aren't because it's so rare), so he looked it up on the computer and we discussed it for about 10 minutes - he was truly interested and wanted to know everything, as I've always wondered if that played any part in my other issues - Deteriorating arthritis and nerve damage in neck, FMS, CFS, TMJ, severe dry eye, Carpal Tunnel.
Best wishes for a quick recovery. -Mary
Hi schmooze2,
No Heidi isn't a service dog maybe someone who has one can tell you how.
Thanks for your post - I agree 100% with everything you suggested. I've always needed a cover over me, even when it's hot - now I know why! It never occurred to me, although it really should have, I guess. A pain relief product that works well for me is 024 for neck / back pain and aromatherapy. I love the stuff, although I've read complaints about it being "just camphor and essential oils". It reduces the pain in my neck immensely and the oils help me relax and sleep better. Your post reminded me that I've been out for awhile and need to restock! Thank you! http://www.024zone.com/
evysmom said:
It sounds like you and I have a lot in common. I have had to stop working. Have had fibro 10 years now. Even stopped driving. I also walk with a cane everywhere I walk. When I don't use a cane, I'm in a wheelchair. My muscles, even though they feel relatively strong when I can use them, are unreliable. I can't count on my legs to just not "give out" under me. I am doing so much in the way of fall prevention. I am certain the last thing I need is another painful injury on top of this crap. I'm so sorry you dropped a weight. OMG that sucks!!! In that regard, try adding some anti-inflammatory foods to your diet. You might be surprised how much cinnamon, ginger, and cayenne pepper can do to reduce inflammation from injuries.
I have many times like you are describing where I just am overwhelmed by the very thought of even getting out of my bed. I tried Lyrica once and since it didn't help me within 2 months, I came off it. I don't take anything for my fibro. I do take a combo of antidepressants. I also take 2 migraine preventatives. I have one migraine rescue drug and take valium 5mg as needed when I just cannot tolerate being conscious.
There are times when I actually cannot even brush my teeth, let alone prepare food for myself or groom myself very well. And forget about coherent talking. I stay entirely confused for hours at a time.
The only thing I can tell you is this: These drastic, extreme pain times don't last forever. Someday, somehow, it will lessen and you will be able to function a little better. Who knows when but, it is something to look forward to. Keep your eye on that prize. I love a quote I read once saying "The night is not forever". And that's true, right? The sun does come up, and that's true of us too. We have ups and downs. You are in a super low spot. Don't put pressure on yourself to try to do a lot. Don't beat yourself up because you are having trouble thinking and talking. I agree with Auburnm, try to control what you can control. I really believe in essential oils as relief and healing. Even if you can't sleep, make yourself rest. Deep breathing. I have a magic blanket which has made a HUGE difference for me. My nerves crave weight against them. I used to pile on like 6 blankets. You should check this out since it sounds to me like we are very similar in our severity. Most of the folks I talk with don't have to use canes like you and I do. Here is the link for the blanket. It is pricey but, its not a pill with side effects and it works instantly. Its the best investment I ever made. I have a twin sized one and mine is 16 pounds. You figure out how much weight you need from a chart and whatever size you want. Can choose fabrics also. http://themagicblanket.net/index.html
I so hope something here helps and you get some relief soon. I have been where you are and it is frightening to think you cannot cope with life. But don't lose confidence, you can do it. It is crazy hard and miserable but, you can.
Liz:
I'm highly allergic to a lot of meds, too, especially NSAIDs. I have a hard time with exercise, like everyone else, but I have a Pilates machine in the box that I bought about 6 months ago! I owned another many years ago and loved it. I've been planning to redo the room, so I haven't opened the new one yet. Well, my new doctor told me yesterday that he strongly recommended Pilates over yoga or other exercises. That was enough for me to start on the room today and get the machine set up. I have deteriorating arthritis in my neck and had a cervical laminectomy and fusion in 2004, so the protection Pilates offers in that area while exercising is a lifesaver for me. I also agree with aromatherapy and deep breathing - they really do help me relax, which lessens pain and helps me get to sleep.
I'm sorry we're all going through this, but I am so grateful to have found others who understand what I've been dealing with for over 20 years! -Mary
Liz said:
Kim,
I am so sorry that you are going through this. As someone who someone that has had fibro for 28 years, I have been through a lot of Drs and different treatments. Lyrica was not right for me either. I had 3 strokes and a heart attack while on it. My husband thought he would lose me for sure. I also had complex migranes. I tell you all this to let you know, that some meds are just night right for the fiibro group. I have move from my home in Louisiana to a home in Tn my husband bought us for the summer. I spent the money and got the best mattress on the market. I know everyone can not do this. But getting away from stress and sleeping well are major factors to how your fibro reacts. Also, whatever brought it on is another thing to look at. I find that keeping a journal and making myself realize what happen is passed now I look after me. Calm youreslf. Get some organic products that will help you sleep. One I use is very cheap but very good. It is call lavender night lotion. You get it from Avon. It will actually relax you. In the morn after a shower, use Avon energy lotion, which picks you up. You will find sense of smell does a lot. I am not one for even the least of exercise, because my body will kill me the next day. No matter how many times a week or how light I suffer. I allow myself to go to bed when I am ready if the restless legs are not there and get up when I want. Talk to your Dr. if you need to ask for a fibro specialist. I got lucky. My Drs wife and partner both have fibro. He is very knowledgeable. Enough to tell me no more meds, I am allergic to them all. But there are new things coming out all the time. Look up some of the new studies, ask your Dr about them. But I must say this. God gives me a lot of help. As a Pastor, I lean on Him every day. When I lean on man everything falls through. Get closer to the Lord and ask for some help. He will never fail you. My prayers will be with you. Tender hugs and love.
Plus, it have not been proven the ingredients really work - google it. I recommend safe and moderate exercise and a healthy diet with smoothies made from all natural ingredients for safe and healthy weight loss. It's cheaper and proven. Zeal is another expensive product that's being publicized. A friend sent me some and it made me nauseous. On the other hand, whatever works for you without harming your health is worth spending $$ on.
Petunia Girl said:
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Thank you,
Petunia
Barb, I never thought about my 'cycle' being an issue since my total hysterectomy in 2011, however, it makes sense! Thank you for the awareness. I will definitely keep a journal to track and see if this is an issue with me! THANK YOU. This is why it is so important for us to share our experiences!!!
BarbieBlurtter said:
Kim,
All the ladies gave you very good advice. So, I'll only add a little. Just know that there are a lot of people who are sending you good thoughts & energy. This is just a phase. I find the worst of it during my cycle (I don't have a period any more, but the body still has a cycle). Using a calendar to keep track of the severity (1 - 10 scale) can help you with future flare ups, thus preventing activities that make it worse on those days.
Wishing you well and a better day. Barb
ANY pet would be of service to you, I promise. Doesn't need to be a service dog, although depending on your circumstances may be what you need. ALL animals bring joy and comfort. From a rescuer/adopter/foster...
shmoots1 said:
Suzyq, is your dog a service dog? And how did you go about getting one? I am trying to look into myself. I think it would be a benefit for me.
Kim
Yes please. Thank you.
lesley said:
Just discussing this very thing with several others on another discussion group. If you would like I can add you...just friended you
Me, too, thank you!
shmoots1 said:
Yes please. Thank you.lesley said:
Just discussing this very thing with several others on another discussion group. If you would like I can add you...just friended you
Severe pain makes anyone foggy. If you're taking narcotics for the pain, there's even more fog.For 6 months I've been having terrible pain and couldn't walk.
I have fibro and 3 autoimmune diseases. All my medical problems aside, I want to talk about pain. I've be on narcotic pain meds for 2 years (prescribed by a pain clinic. Very light dose, but if I take a second dose in 12 hours, I turn to jello.
Recently my pain became overwhelming. I knew I was slipping. I called my psychiatrist and he put me on Effexor. After 2 weeks I felt better and I'm walking now. Not that anything has healed, but this antidepressant blocks chemicals that transmit pain in the nerves. Someone here mentioned cymbalta--it's also an antidepressant that does the same thing.
The medication has tuned down the pain about 90%. It also makes the remaining pain tolerable. And I only take one pain med at night. When I get up in the morning, the stiffness I've been experiencing is gone.
You got to hold on.
Hi Kim, Lots of caring and great advice here! I do relate as I have had fibromyalgia for 17 years and had to stop working when fibro hit me. I’m now having to use a cane to walk also.
I see from your profile that you are working with both your PCP and a neurologist for you fibromyalgia. You absolutely need to get in to see the dr who prescribed you the Lyrica and discuss your issues with the swelling and weight gain. I had a similar reaction to Neurontin, which is in the same class of drugs. But you should not just stop Lyrica on your own, you must do it under your Drs supervision as you can have withdrawal from it. Often another medication such as Savella can be started while the Lyrica is tapered, as they are two different drug classes.
Ask your neurologist about Savella. It does not cause weight gain and is also approved to treat fibromyalgia. Everyone is different but there are many medications that can work together to relieve the worst symptoms. Examples would be Savella for the nerve sensitivity (now thought to be the primary mechanism of fibromyalgia), Elavil or Ambien for increased Stage-4 sleep, Flexaril for muscle tightness, Tramadol for chronic pain (not truly an opiate), and the Percoset for break-through pain. Then of course all the non-medication modalities that people have mentioned here, like meditation, deep-tissue massage, heat, hot baths etc.
But first, go call your Drs office and get an immediate appointment to discuss the Lyrica situation! Then take it from there.
Starr
USAGirl, I am very glad you are feeling better. I also have multiple auto-immune diseases. I am not the type to give up; I will fight until there can't anymore.
Starr, I am on Elavil and Klonipin for sleep.
Because it has been mentioned, I do see a therapist who I absolutely adore. She is great and really takes her time. I am also on an anti-anxiety, paxil, which y'all are right that they do help! I have an upcoming appointment with my Neuro., but I plan on moving it up to discuss my options. I tappered off the Lyrica, I know withdrawl can be a b**ch bc I did it once on accident. I take so many meds I didn't realize I had run out, and I thought I had the stomach flu for about 3 days.
I would also like to thank everyone for the prayers and positive thoughts. I am grateful.