I'm back in physical therapy with Dr. Leon Melkonian, the greatest doctor who specializes in Fibromyalgia. He was referred to me by my Rheumatologist, Dr. Thai, in Huntington Beach. Dr. Mel, as he likes to be called, is in Costa Mesa at West Coast Sports & Pain Center. He is a Doctor of Chiropractic Medicine, but also administers a lot of pt. He's really helped me get the worst of it out, and has great tips. The most recent one he gave me was that study's have shown that soaking sore arthritis areas (such as my hand) in epsom salts for 10 minutes and then using the pariffin bath actually help in slowing down the inflammation to that particular joint. Thanks doc! In case you're interested his phone # is 714-438-1190.
So, as I said I've been really struggling with my stupid and completely annoying Fibromyalgia lately. My Rheumatologist changed my anti-depressant just over a month ago, by decreasing the Neurontin from three times a day, to just in the evening, and putting me on Wellbutrin two times a day. At first I thought I'd go crazy with the amount of nerve pain I had. It's slowly been getting better, though as always, if I don't exercise or walk daily it rears it's ugly head. I'm not sure if the Wellbutrin has helped my pressure points much, the ones on my right side seem to be the same. I don't feel near as foggy, and I have been able to lose some much need weight. The Dr. increased my dosage from 150mg 1 x a day to 100 mg 2 x a day in hopes of helping with the nerve pain. It helped considerably in the beginning, but now it seems to be coming through. I'm sure hoping the next step up, if necessary, will do the trick. I certainly don't want to go back up on the Neurontin. I'd be willing to stretch more just to stay off that particular medication. My medication list is soooo long!
At the gym I've found out how to do not only light weights for my upper body, but also how to use the machines for that area. Ever since I was initially in physical therapy for my Fibromyalgia several years back, I was taught to use the tennis ball to help work out some of the pressure points in my back and shoulder areas. I place the tennis ball between a selected shoulder area and the wall, and run it up and down or around the area after every exercise. It's my thinking it doesn't allow the pressure point to build up in size and pain. I've tried not using the ball and found out that as soon as I do 1 rep of 1 exercise that area has an increase in the soreness and size where my pressure point is. It takes longer to work out, but believe me, it's well worth it.
My Remicade treatments are going good. As my Rheumatologist had told me the infusions are accumulative, and I feel much better than I used to as the time nears for me to have another infusion. I still get fatigued, espeically since I've been seriously dieting, and I try to accomodate that by getting plenty of rest. Not always easy, but worth doing. My right shoulder and my hands are the areas that I notice getting more painful the closer I get to my infusion date. I can get flare-ups with my RA, something else my doctor told me was possibly, but I've quickly learned how to take is slow on a regular basis. Nothing like pain to keep things under control! I am glad I decided on this course, although I am concerned with the decrease in doseage due to weight loss and how I will feel if it comes to needing to do that. Any time you change medications the "fear pain" roars loudly!
Had my Remicade infusion yesterday, August 14th. The 1st day or two after I feel like I've been run over by a truck. Nothing seemed to help this time, plus I had a headache and back ache, 2 common side effects. After a fitful night's sleep I feel like I might be over the worst of it. The Dr. put me back on steroids the 3 weeks prior to the infusion, to try and help with the break through pain and stiffness. It seems to be helping but it does give you the'got-the-munchies' that we all love. Trying to look past the fat and see that it's all for the good. humm....will let you know how that goes.
Wow, this last Remicade treatment I had this morning has really kicked my butt! I have been so wiped out today. It took a little over 3 hours for the infusion and all I want to do is sleep. I have little strength and it is a real struggle to keep my eyes open. I'm not sure if it's because I was pretty exhausted prior to the treatment or what, but I haven't had this reaction since my 1st infusion. I'm also having a struggle with the billing staff at the Dr's office and the insurance. The insurance requested the dr's tax id, address, etc, which is nothing new for them to do, it's almost like a stall technique. But the billing staff called the insurance company and found out they want my medical records as well. I'm sure they are questioning the fact that I'm seeing 2 RA drs. The RA Dr. that is monitoring my Remicade treatment down here in M.V. is not the RA Dr. that I have been under the care of for the last 5+ years. She is up in Huntington Beach and was referred to me by a very good source. I am very very pleased with her, and trust her. This M.V. Dr & the H.B. Dr are friends, and he is monitoring me during the infusions because I needed a Dr. within my network so I could afford the cost. My H.B. dr is out of network. Each vial of Remicade medication costs the Dr's $1000 each. I am getting 4 vials. Out of network infusion would cost me $3,300 a year! These medications are so outrageous. Of course we get a lower in network cost, and it is worth it for the benefit I am getting from the medication. I have been on 2 injectables, Humeria, and twice on Enbrel and am also on a lot of other medications. The last 2 years have been rough so we are all thrilled that the Remicade is working. I do appreciate everyone's suggestions to take a different approach to my RA such as holistic, etc, but please, no comments. I've looked into everything and have read the pro's and con's. Thank you though.
This next week will be my 3rd infustion of Remicade and I'm ready for it. Within 2-3 days I noticed improvement in my hands and shoulders and some in my knees. My rheumatologist told me I would feel the effects wearing off close to when I was due for my next infusion. I went 2 weeks between the 1st and 2nd, and 4 weeks between the 2nd and now 3rd. I will probably go 6 weeks between the 3rd and 4th infusions, during which time I am hoping I will see even more marked improvement in my shoulders, hands, and knees. My hands and shoulders are the worst, especially during peak times of crafting, gardening or cleaning. I'm still trying to work out at the rec center 2 x a week, but with my busy schedule lately, I've been going more like 1 x a week, with stretching and walking done daily. I am feeling somewhat optomistic about the positive aspects of Remicade and hopeful it will continue to improve.
I'm started a new arthritis treatment today. I had my 1st IV infusion of Remicade today, administered at a local RA Dr's office. There is a nurse who is in the room the whole time (3 1/2) hours, along with several other patients who are taking different medications too. She caters to us, taking our blood pressure, checking to see if we are ok and if we need anything, etc. All very comforting. It totally wiped me out, made me slightly nauseous, upset my IBS, and exhausted me. Other than that (trust me that's good!), I came through it just fine and I'm scheduled for my next treatment in 2 weeks. I'll be getting a treatment every 2, 4, 6, then 8 weeks, and hopefully be able to be on an every 8 week treatment plan. I'm trying to remain positive in hopes that this medication will help with the pain and stiffness that has become an every day part of my life.
At this last rheumatologist appointment, the doctor changed my antidepressant medication. I've been on Neurontin for a long time for my Fibromyalgia nerve pain, and she wants to see how a change to Wellbutrin will help. I'm feeling hopeful, but I know there are newer drugs that have been slated as Fibromyalgia specific drugs, making me consider asking her about those. Most recent was Pregabalin. My sister is on Pregabalin, brand name Lyrica, though I haven't heard if it's helping her. It is is a compound that is chemically and structurally similar to gabapentin, which is Neurontin, which may be why the doctor suggested something different. It's all a game of Russian Roulette anyway!
Had another check up with my RA dr. The shot of Celeston brought such relief, though, as normal only lasted for at most 4 days. Still grateful for it and also the knowledge that it is my RA that was flaring up. I'm feeling a bit better now, but still have my bad days, so Dr. put me on Prednisone, every other day until I see her again. I'll stay on the Humera until then and see if it is going to kick in more. Hope so cause the next thing is Remicade, and I really don't want to go on it, as according to Dr it is the last resort. Think I just need to toughen up and realize that I'm not going to be rid of the pain and issues. Just life....
I'm so over my RA, Fibromyalgia, and any other disease I have and may get in the future. Seems like it's one thing after another and I'm sick of it! Had my 2 month check up with my rheumatologist. We discussed whether this new injectable medication Humera, is actually working any better than the Enbrel injectable medication I was on. My stiffness in my hands and in general every where has become increasingly worse to where I'm having trouble doing any thing. I feel like I'm walking in slow motion and using my hands is hard. It takes at least 1 1/2 hours in the am to feel like there is a improvement, and even then I still drop and fumble things all day. The RA doc gave me a steriod shot of Celestone. It really helped, and lasted for a few days. I could feel it starting to wear off over the weekend. (I saw her on Tues) The shot was for relief of course and as a tool to see if my flare/symptoms were due to RA. I see her again in a month, and hopefully by then the Humera will have kicked in. If not, we'll discuss what's next.
I've also been having issues with my right hand and forearm. I saw an Orthopedic, had the nerve test he requested (holy s_ _ _ !! that hurt!!) which cost almost $1,000, and saw my RA dr. She thinks it's Lateral epicondylitis, commonly known as tennis elbow. She suggested getting a splint, which I've been wearing every night. Waiting for the test results, and hoping to get some answers. The splint does help, it just doesn't take much use during the day to set it off.
I'm dealing with my medication change as best as can be expected. I've had some new & very annoyingly muscle pain since the change. The RA Dr. has assured me that it is not related to the med change, but I see her next week so I will explain and address them in person rather than via the phone. The changes feel a bit like nerve pain, but also like muscle pain and get so bad that I can barely function. In addition I get foggy headed and nothing annoys me more than mis-representing myself. ha! My RA doc says its fibromyalgia related, but since it seems to be partially related to my hypoglycemia/eating I had a check up with my MD. He did the short 2 hour diabetes test on me, the results which I should receive next week. He seems to think it is not diabetes, but being the good Dr that he is, puts up with me! He has referred me to an endocronologist, which I think I will pursue, after seeing the RA Dr of course.
I'm sleeping great, and with the new installation of a ceiling fan above our bed, a lot cooler too. My poor sweet Jerry...he puts up with all this as if it's just something everyone goes through. Have I mentioned lately how much I love him?
While at the MD I mentioned the bottom of my foot hurt A LOT....thus resulting in the diagnosis of plantar fascitis, a common yet annoying condition one gets from old age, which is a catagory I fit into nicely thank you. Expensive shoes and orthodics later, it feels better. As I know it, it takes about a month to overcome. So much for "matchy-matchy-cute-and-stylish-shoe-wear" for now!
Once again I'm changing my medications. My RA seems to be held at bay with the Celebrex, Enbrel and Methotrexate. My DDD in my back and neck give me problems but with physical therapy there isn't much else I can do except grin and bear it. My fibromyalgia on the other hand is a constant problem. I've been dealing with nerve pain in my legs and my pressure points get aggravated at the least amount of work. I still try to work out 1-2 times a week, go for a walk almost daily and still it stays with me. Physical therapy helps, but only to a certain point. My RA Dr. decided to try me on a different anti-depressant; Cymbalta. From what I understand it's fairly new and supposed to help with fibro. She had me step down on my Effexor from 75 mg a day to 37.5 mg daily. She also is having me take Neurontin in the morning as opposed to my usual evening dose. The first 3-4 days were horrible. I was in a constant fog and the nerve pain was unreal. I was also really dizzy and felt like a zombie. The fog has mostly lifted, and the nerve pain is the worst in the mornings, subsiding for the most part by the evening, only to start all over again in the morning. My pressure points are still very tender as well. Maybe this side effect will eventually work it's way out, but for now I'm not enjoying it at all. I'm only in my second week so I have room to feel hopeful. Tell me that's true.
Wanted to make a note here; my Rheumatologist put me on a new medication in the last few weeks. I've been experiencing an usual amount of leg nerve pain, which I mentioned to her. She said it is called Restless Leg Pain and prescribed "Klonopin", to be taken only as needed. I've used it a few times and found it to be a great relief. The symptoms are a little different than the nerve pain in that my legs feel like the muscles themselves are constantly moving even though I'm still. The combination of nerve pain and this pain is not fun. Thank goodness for my Dr.
Starting to see the light at the end of the tunnel. In other words, after 2 1/2 days of a totally unfun flare with my RA and Fibro, I'm beginning to feel like I might live. I stupidly did way too much last week, with the termite/front patio rebuild, errands, chores, adding weights and an additional day to my work out schedule, as well as trying to get a lot done around here and basically ended up being down and out all weekend. My sweet hubby has been a great help both around the house, with meals and taking care of me. I also reluctantly decided to take a day off work to climb the rest of the way out of this hell hole of pain and get back on my feet. It is during these times that I realize 2 things; 1) There are people out there who have it a lot worse than I do, 2) I hate pain. Until later, feel grateful for what you've got and don't take advantage of those around you. You never know when you're going to need to ask for help. Big grin inserted here.
So, the fall I described back in January resulted in some painful neck and shoulder problems that after more PT finally resolved itself. I had to back off on my exercise routine, but have since recovered the loss. A couple of new things to report lately. One, I have a synovial cyst on my right ankle. A Synovial Cyst is very similar to a Ganglion one often sees on the the back of one's wrist. It is a benign (non-cancerous) problem, is associated to my RA, and not a concern. My RA Dr. put me on Klonopin for my Restless Leg Syndrome, something I didn't know I had. 1/2 a tablet really works wonders, and I'm taking it only as needed. I'm still on the Neurontin for the fibromyalgia nerve pain. I'm continuing to work out with the machines at work and free weights, and am amazed at not only my progress but at how it is helping my fibromyalgia. I would not have thought it was possible. I think more rest/sleep would make a big difference in being constantly tired though!
My body continues to amaze & frustrate me with all it's endless problems it throws my way. About a month ago I started noticing extra pain in my neck, shoulder and right arm. Later this was accompanied by numbness and tingling in my thumb, forefinger and pinkie. Additionally I had new pain and soreness in myback, on the top of my shoulder blade. About 2 weeks ago I once again proved my klutzyness by tripping and falling in the living room. Details will not be provided. I landed hard enough (with arms outstretched) to produce a loud thud, which Matt heard. Splattered within the depths of our dirty beige carpet, I called for Matt with that horrid commercialized phraze "I've fallen.....". He was already half way to my aide asking what he could do. When I realized all that was (at the time) wounded was my pride, and having embarrassed myself once again in front of youth, I picked myself up and laughed it off. Semi-fast forward to a week later to the sound of my alarm clock announcing that yes, it was indeed time to start another day of my life. Imagine my surprise when I could hardly lift my head off my neck without feeling like it was the Rock Of Gibraltar. I stupidly ran a few errands, until I thought I was going to vomit and went home to my heating pad, ice pack, and TENS unit. I made an appointment for the following day with my boss, a PT, to access the situation.
Had my 2nd opinion with the Orthopedic. He had an intern from UCI with him (UCI rocks!). The difference between the 1st Orthopedic doc and this 2nd one is night and day. This Dr. is not at all arrogant or pushy. He has a very positive and pleasant bedside manner and took a long time with me. The wait to see him was fairly long, but I don't mind when the Dr. is worth it. His opinion is that I am NOT a candidate for surgery. While I do have lumbar DDD, he said the MRI pictures showed it is not as bad as the 1st Orthopedic had said. Additionally he said the fusion surgery I was told I needed on my lower disk would only apply additional pressure on the upper disks which in turn would cause them to degenerate quicker. Nice. Not. He did say my sciatica is from a combination of health issues; lumbar DDD and Fibromyalgia. He suggested 3 x a week for 4 weeks of PT with daily stretching exercises with a return check up. I also have ITB, Iliotibial Band syndrome. The iliotibial band is a thick band of tissue that extends from the thigh down over the knee and attaches to the tibia. When the knee bends and straightens, the iliotibial band slides over the bony parts of the outer knee. It is a well recognized cause of pain in runners, although not unique to them. It is associated with overuse situations as well as with conditions that produce tightness of the muscles such as Fibromyalgia. Isn't that neat? PT should help with that, as well as stretching exercises.
Had my thyroid tested for a 2nd time and the levels are still low. Dang. So once again my meds were adjusted and we wait. I'll go back in 3 weeks to re-test and hopefully they will have leveled off. So, I'm still really tired and cold. Errgghh! At my Rheumatologist's request, I'll have a 2nd opinion on my lumbar DDD to a Orthopedic she highly recommends and one whom she said would give me the honest truth as to whether I need surgery. She also is referring me to find out if my sciatica is all due to my lumbar DDD, or in part related to my fibromyalgia. This should be interesting. BTW, he's in Newport Beach. I hate the 55 freeway.
My health hasn't been that good lately. My last blood work showed my thyroid levels were low, so my meds have been altered. I wondered why I was so tired lately, and cold. It's been 2 weeks and I still feel really tired, just don't have the stamina like I did. I sleep A LOT! I was told I can take other medications if necessary to help with that, but I'm hoping my body will level off and adjust. In the meantime thank goodness I have a nice bed. Thank you honey! Oddly enough though, my hot flashes have improved, so go figure! My back & sciatica have been driving me nuts lately. Still getting PT, but just once a week now. Trying to keep up with the exercises and grin and bear it. It is possible, but it would help if life would slow down. Jerry came into work with me and my boss showed him specifically how to stretch my leg to help my sciatica, which has helped. Overall though, I just feel old! So much for 51, right?
Some good news.....if you can call having arthritis good news. I was initially told I had osteoporosis, which is not a good thing. I talked with the Dr.'s office today and the diagnosis is actually osteoarthritis. Not exactly good news, but when you've been thinking for 3 days that you have osteoporosis, well....you get the drift.
Too much going on with my health lately. My MD referred me to a spine orthopedic Dr. due to the MRI back results. I wasn't surprised to learn that he thinks I am a candidate for back surgery. The worst of my problems are in my lower back, where I have pinching of the nerve, which was obvious when he discussed the MRI pictures. The right side is pinching more than the left, but that too is starting to get pinched. This explains the daily sciatica problems. I'm doing exercises for my back now in addition to my leg and shoulder exercises. The spine orthopedic Dr. did a few other tests and because of the results strongly suggested I get an MRI on my neck. I've gotten some of the MRI results back on my neck, although I don't see the spine orthopedic Dr. until next week. Turns out I have almost the same kind of problems in my neck as I do with my back. Thank goodness their isn't any nerve pinching in my neck. My RA Dr. called & faxed over more PT to treat and strengthen it. She also said that the diagnosis for treatment is not Rheumatology but rather osteporosis. Damn. This was totally unexpected and obviously upsetting. I've been really good about my diet & taking calcium & vitamins for a long time. I've also exercised for years, so I'm hopeful that these things will be beneficial with my new diagnosis. Once I see the spine orthopedic Dr. as well as my RA Dr. in the next few weeks I'll get more information which I hope will help me even more.
Much has happened since I last blogged here. Seen the Dr. a couple times, had some minor adjustments to my cocktail, and some new problems crop up. I'm back on my higher dose of Neurontin and it is helping with the dull ache/ sudden drop syndrome (my terminology). Yeah. Also increased my methotrexate to 6 a week, which has helped with pain and being so tired. Dr. put me on a short term high dose of prednisone to "crack the whip" so to speak with my hands. It helped temporarily, but now I'm back to square one. In general they complain whenever I use them. I do have a hot wax machine & dipping/coating them helps a lot. An added side effects is how soft it makes my skin. My knees are in better shape. Not sure why. Not asking either. Still plodding along with my exercises; walking, stretching, & ones given to me by my PT. My R shoulder has been flaring up, DR. said it was due to RA, and my back & sciatica have been given me tons of problems. RX with PT showed more rotator cuff/shoulder girdle problems in my shoulder, so in physical therapy. Ya Hoo! I live for the pain. Not. Dr. ordered me a MRI for my back. That was very interesting. Never had an Open MRI before. Lots of knocking sounds, but I basically took a cat nap through the 1 hour process. Despite my predictions of nothing showing up, the results were not that good. L1 through L5 discs all show some levels of degenerative arthritis, also known as DDD, or dengenerative disc disease. Damn. Add to that varied disc bulges and narrowing of the invertebral foramina (space in between disc's & vertebral bone) and you have ouch syndrome. Icing on the cake: fibromyalgia and a weak back and the prognosis is "exercise/maintain/don't gain". Got that? Lucky for me I have a wonderful Rhematologist and Physical Therapist where I just happen to work.
Had my 8 week checkup with my Rheumatologist last week. She adjusted my cocktail in hopes of calming down my RA and Fibro. I had decreased my dose of Methotrexate & Neurontin to see if I could tolerate it. Found out I don't do that well without the meds. Just in the short amount of time I decreased my methotrexate, the knuckles in my hands started getting larger & hurting all the time. My knees also have become a constant source of pain, with RA, bursitis and tendonitis. Also had some new Fibro symptoms going on in my arm and leg. A sudden deep & dull pain would arise and I drop or nearly drop whatever I am holding. If I'm standing, I feel if I can't remain that way. The Dr. said the added Neurontin should help. In actuality, I hope it completely gets rid of it, but I guess I shouldn't expect that. Still doing the walking, stretching, pushups, situps thing. Horrah for me. I feel so darn old.
I've been gradually increasing the amount of my daily exercises. Not bad for this ole' broad. I've also changed some of my medications; I've decreased my Methotrexate, increased my Celebrex, and decreased my Neurontin, all in hopes of helping out my liver, making my mindfeel clearer, and fine tuning my Rheumatoid Arthritis and Fibromyalgia. Decreasing my Methotrexate was hard, and I can definately feel the effects. I thought I'd never get used to the decrease in the Neurontin, the leg pain I have from the Fibro drove me up the wall for about 2 weeks, but it has finally dimmed considerably. I can feel a bit of improvement with the double dose of Celebrex daily, but still miss the Methotrexate. Stupid body. The interesting result of doing exercises which I never even saw coming was how the push ups have helped out the horribly large and painful pressure points I have in my right arm, down my right side and in my right shoulder blade. The pain from daily use of my right side has decreased and the size of the pressure points has decreased as well. Amazing. Who would have ever thought?
So I've been doing my exercises daily and religiously ever since Christmas. I do push ups, situps, knee strengthening exercises, back strengthening exercises, and my regular stretches. It sure feels good to do all this.
Leave it to my good friend Debbie, the Pro PT Assitant at work, to find a way to motivate me. She gave me a card with my gift, and in it she said "Now drop and give me 20."! My heart took a sudden extra ping because I thought she was going to hold me to it. Yet somehow I managed to get out of showing her just how weak I am although I'm sure she really knows, she's just too kind not to say anything. I've been giving it some good thought though, and decided to see what I could about making that casual remark in my Christmas card a possibility.
I’ve been feeling pretty good for the most part lately, surprised by how much I can accomplish. I haven’t had to take a pain pill, thanks in part to the TENS unit, which I use almost daily. The Cuddle Ewe and new mattress have been wonderful. I wish we’d gotten them sooner. The Effexor is still helping, I think. I’ve read horror stories on line about going off of them, and feel terrified to do just that. Maybe I’ll never have to! Still can’t handle lifting weights of any kind, but I walk, stretch, and do “mock” weight lifting; the movements without the weights. I’ve read some people with fibromyalgia can’t do any weight lifting at all, so I don’t feel too wimpy.
I’ve been on Effexor for about 2 months now, and aside from feeling nauseated 24/7 and having no appetite what so ever, I have found that it helps with the pain from Fibromyalgia. It makes day-to-day living a bit less stressful. I’ve been using my TENS unit again on my right shoulder pressure points that seem to be constantly huge and painful, which I am grateful for. I’ve also found I can take ½ tab of Ambien (as opposed to 1 full tab) and still get a pretty good night’s sleep. I’ve tried another product by Hylands; Calms, Nerve Tension Sleeplessness. It sure helped me feel relaxed and I slept great. Still loving my Cuddle Ewe mattress pad too. It’s like sleeping on a cloud! I’ve been paying close attention to my diet and how certain foods affect me. Carbohydrates really make me feel spacey, as opposed to protein, which helps me think clearly. Just a thought.