So… I was officially diagnosed with fibromyalgia in past few months as well as osteoarthritis.(t_o complicate things I was diagnosed though likely had symptoms for sometime of dysautonomia/autonomic dysfunction / perhaps form of P.O.T.S in 2015…among some other health issues)_ I am 44 and until recent years I felt very young and relatively healthy. I thought I would feel 25 forever. I could do what I wanted…
It was in the past few years that I realized (&when symptoms intensified and new cropped up) that oh!–typical 40somethings don’t live with unusual daily pain and don’t feel like this, don’t have such desperate sleep issues and chronic exhaustion. I was so caught in my own daily life trying to function… I took me awhile to seek help. I recently read the term “voodoo doll knife” pain so fitting and funny not funny. How could I think that was normal for so long feeling random stabbing pains in my body? ( among the other lovelies that come with the dysautonomia and fibromyalgia my body working with)
I digress. I came to post today with a questions: 1)Physical Therapy: I tried in perhaps 2010 for a hip issue ( I believe related to either Fibromyalgia or Arthritis but regardlesss…) . I’m not sure how much it helped. The best thing was the heat compress at the end of the session.
2**) Meds**: My new (first) rheum. dr right now is prescribing my 2nd round of meds (I am chemically sensitive --I believe due to the dysautonomia; many don’t work, undesirable side effects or I become allergic). I have yet to try them–psyching my self up to it in next few days --Gabopentin and something else can’t remember, an antiinflammatory that lasts 24 hours. I live in a state with legal medical marijuana. I am considering (will take along time to think about this) at some point to try that route though the process of getting license seems intimidating and complicated. I would love to get pharmaceuticals out of my system for a bit and give that a try at some point. ( I also take a few other meds for migraines etc)
Anyone have good outcome with Physical therapy for joint/ muscle pain and general energy level? Another issue for me is just time. Would it be worth my time? I am still working and parent of older children. I do walk more than a mile several times a week when my feet and hip pain are not at a level 10. Seeing a orthopedist soon to make sure this is not detrimental to my feet due to an odd Xray (perhaps TMI) just clarifying I am not completely sedentary and my job is teaching young children so as long as I can do it --I rarely sit still during the day. Though I am on the couch every night as soon as I get home if I am able…
Long post for really two questions. Thanks for anyone who takes time to read and listen. Always heart-filling to find kindred spirits who REALLY understand the journey.
Hi Stella…ive been deali g with fibro a d CFS for over 30 yrs. Gabapentin has helped me greatly for a number of years. It is prescribed alot for fibro and nerve pain and many find it helpful, from what i hear, some do have negative reactions…just start slow on everything. Whatever docs prescribe, i half or quarter things at first. Ive tried phydical therapy two different series…aquatic therapy and regular. For me, both seemed to exacerbate my fibro pain but i read about many who have great benefit. It all depends on your specific issues and your body. Perhaps mine wasnt helpful as the ones i saw didnt seem to have any particular knowledge of fibro or cfs. I still plan to go back but since i have to pay out of pocket…im going to make sure i get someone experienced in our issues. We are not “one size fits all” people. Good luck in your healing journey.
Physical therapy wasn’t helpful for me, but moderate exercise (when I feel well enough) seems to help a bit with my energy level.
Meditation and visualization help some with my pain. I saw a therapist for a few months who helped me with guided imagery, trying to figure out what kinds would help with certain symptoms. It takes willpower to stick with it, though, and I don’t always do it.
I haven’t found any super helpful medicines. I take tramadol, which helped a lot for a few months, and now only slightly. Magnesium supplements (250 mg twice a day) help a bit, as does fish oil, I think, but it’s harder to tell if the fish oil helps than to tell that the magnesium does.
As for gabapentin (Neurontin), I got a slight benefit for a few months at a low dose, and then it stopped helping. I went up to the highest dose and had pretty bad side effects and no benefit. The medicine Lyrica is chemically very similar but has fewer side effects for most people so it might be better to start with that one (didn’t help me).
My doctor thinks I should try ketamine and low-dose suboxone (sp?) next. As for medical marijuana, you can buy CBD oil (marijuana with the THC removed, basically) on some websites, sometimes Amazon. Haven’t tried it but my dr. says it helps some of his patients.
Hi, Stellaluna,
PT did help me, mostly to get me started and structured with light to medium aerobic activity. Initially, during my “diagnosis period,” my situation was worsened overall by 2 torn rotator cuffs, and much inactivity due to fairly serious pain. When I could finally rise and do even some energetic walking, it all helped.
The medical MJ has been helpful to me in some instances, but not to the exclusion of other more traditional drugs, as the situation has warranted. Btw, take all drugs EXACTLY as your Dr orders it, don’t mess around with dosing. If one were to have concerns about side effects, best to address it with the prescribing physician, don’t monkey around with stuff. (No, seriously.)
CBD is the non-psychoactive components of the medical marijuana, frequently good for pain. My understanding is that CBD and certain THC components compliment each other. You can get CBD-only products, and you can get it balanced with certain percentages of THC. (A new-ish thing: more MMJ strains with higher CBD proportions are being developed due to its demand in the MMJ arena. Yay!) If youre lucky enough to have medical MJ available in your state, then inquire of the doc who certifies you or your local dispensary about the best way to dose yourself. I had CBD tincture drops for under the tongue, but I had a side-effect of a racing heart feeling. I don’t think that is all that common, but when I had some edible forms of CBD (taffy! delicious), I didn’t have that problem.
Hope you feel better. Hope ALL of you have an excellent day or three, in a row even!
Oh. P.S. I’ve been referred to a good pain clinic, and I understand that they have many excellent, non-pharmaceutical options available to folks. As with all that enormous tangle that is FM and related issues, it’s all trial and error.
Thank you for the reminder about meditation and visualization. I often use that for sleep and anxiety. I think I should make and actually physical list for managing my symptoms. I often go through things mentally as I attempt to manage but I think an actual list will help when I am in the throes of it all.
Here it is a few weeks after being prescribed gabapentin and I’ve yet to work up to trying it. (my plan is in next few days) I did try the NSAID (Mobic) … I was at level 8 in many joints last night and it brought it down to maybe a 6.5. This morning the pain is much relieved. I can move/bend my big toe more than I have been able for a year. I did not like a feeling of agitation/ uneasiness that I can only associate with the Mobic though for most of the night. It is nearly gone now. I suppose will see when I take it again.
Oh… out of pocket/deductible/copays. Forgot to consider the cost of physical therapy. duh. I have been going to acupuncture as much as I can afford, sometimes twice a month so that might/would take the place of that.
Thanks for your response. Yes! I think I will half the first dose of Gab.
From the little bit that I have read, what I don’t understand about Fibro and physical therapy is the goal or prescrib therapy is to strengthen the muscle and work around the joint. But how do you do that when, as in my case, every joint in your body is affected (except shoulders) and have arthrits?
I guess you mentioned aeorbic exercise, I keep leading away from PT and leaning toward walking and other exercise as I can on my own…
Thanks Megan. I need to push myself to get to a pool. I spent MANY years as a swimmer and in the water just need to get there again would probably be a wonderful thing.
I have to remember that–1/2 what drs. prescribe. I know for my body likely a good thing at first for most.
I have tried physical therapy, mostly aquatic and did not see any improvement with symptoms. The only benefit was the warmth of the water was relaxing while in there.
I take Gabapentin and have found some relief with it. I tried it when I first was diagnosed but did not like the side effects at all. I do take Vitamin D, magnesium, and fish oil and do think they have helped some.
I hope you can get some helpful medicine without the side effects. Good luck.
Hi Stella, I found physical therapy to be a benefit for me. It took a little bit but once I really committed to doing the home exercises it did help me. I also was fortunate to find someone experience with Fibro. I personally haven’t had success with medications. For one thing my body metabolizes the meds super quickly so often things are not effective. I have had to learn other coping mechanisms. I use a lot of mindfulness activities and work to keep stress as low as possible. Please keep us updated on how you are doing.
Welcome to the site! I have had Physical Therapy twice and about to go for a 3rd time. I find that it does help me for when I get really bad. I don’t work so if your still able to work that is great. If the Physical Therapist doesn’t know anything about Fibro it will be difficult for them to gauge the activities to do with you I would think. There is some level of discomfort because your working out some kinks. I also was on Gabopentin but it did not work for me. I ended up going on Lyrica which has worked until recently. I am home a lot because I don’t work which is bad idea for people with fibro because the more you sit the worse you feel. I’m sorry your going through so much. I live in MA where the voters legalized marijuana but the state doesn’t have the legislature in place. I don’t think I would go that route because it’s not my thing. I’m glad we’ve got a lot of people responding to your message.
Ah, yes. Warm water. Need to muster the energy to run a salt water bath when I’m at my lowest; so healing.
I have not done anything further looking into PT. Trying to save money, I have not been to acupuncture in quite awhile but finally just made an appt. Thoroughly looking fwd to that.
I worry about sharing too much online hence my online name but… important piece of my story here is that I am a teacher. I work with young children and on my feet most of work day non stop (until the autonomic dysfunction forces me to the nearest seat; high stress (oh the stories I could tell parents, children… and of course I am an obligated reported to social services if that gives you insight…). Over the past few years, I have become less able to manage some of the stress. The past 6 months, my physical symptoms have grown exponentially. This week I was also diagnosed with NonAlcoholic Fatty Liver Disease. I also have a minor heart condition. So among other things, yeah I guess its a little crazy that I am still able to work and I am panicking as the new school year is about to begin. Can I do this…? Ok enough vent.
Update: I started Gabapentin. Did NOT like it the first day. Committed to give it some time. I have been using 200mg for about 10 days and It is helping my sleep quite a bit, I think. At first was helping my pain but now seems the pain ease may be wearing off if that is possible? Or my pain is now worse? I have stuck with the NSAID Mobic and seems to be helping quite a bit with some of my joint / arithritis issues. Though after seeing my Gastroenterologist this week (I see him to keep an eye on some hopefully benign liver lesions and cysts), he was a bit concerned about the NSAID use long term. Suggested a OTC like prilosec at very least. I find myself singing that Huey Lewis song “I want a new drug…” I just want something to fix it ; something to make everything better, something that won’t make me feel 3 feet thick, something I can drive on… If only…
I think it is awesome you are a school teacher. I have no doubt there are tons of challenges but you have been making it. I currently also work and even though at times I feel like I am dying I think it does help me overall. I am more active for sure than when I wasn’t working. I can so relate to the feeling of wanting something to make it all better. Man if someone could come up with a cure! The things i have learned over the past few years is to try to focus more on what I can do and what I have versus looking for a cure. The more I accept this the easier it is at least mentally. I also challenge myself to try new things to help manage symptoms. Before, I never would have done physical therapy but when I actually tried it I found a lot of benefit. I also have focused a lot more on mindfulness things. Visualization and deep breathing help me the most. I tried therapeutic yoga once but that was a disaster :-). Anyway please keep us updated on how you are doing. I will be thinking of you with all the little kids, teaching them. Sending hugs!
