Fibro too?

General
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Someone talk to me about fibro. The muscle pain in my back and ribs is beginning to wear thin with me. I have been researching causes of intense muscle pain all over and fibro keeps coming up.

Does anyone have experience muscle pain that was diagnosed as fibro? In addition to all the PSA joint and enthesis pain, I have developed ongoing bad pain in large muscles, mainly in my back. This is going on 5 months now and is no closer to getting better. It hurts to lay on the muscles, use them to get out of bed or out of a chair. Sitting in my hot tub for as long as I can seems to help the back pain for a few hours. Oxy and muscle relaxers do not seem to help much at all.

Readin that fibro can be brought on by stress, they think, all the recent pain and problems from the PSA may be setting it off??? Any ideas anyone???

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Definitely worth exploring. I would start with your rheumy though, they tend to diagnose it. And it tends to be a diagnosis of exclusion too. Sadly I know very little about it, but it is a kind of overreaction to pain type thing as in your brain thinks you’re in pain rather than something is actually injured or damaged.

Sadly though there isn’t a huge amount of treatment for it, other than those happy with that diagnosis do seem to do a lot better consequently. For many people a diagnosis of it is given and they don’t believe it’s the right one as for example they believe they have PsA instead but that diagnosis and therefore treatment is withheld.

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I am just becoming so frustrated. I have been able to deal with the pain until recently. I have reached a point that it is becoming more than my mind can dial down. All the large muscles on my back, ribs, shoulders, and chest hurt! Not a little. They hurt to be pushed on. I will not take more oxy to tamp it down, because it seems to have little effect. I have added Robaxin to the mix and it may help a little. I already take 75mg of Lyric twice a day, and have since Lyrica first came out. I do not take it for pain. I take it for an off-label reason. For some people, it can act as a mood stabilizer and it has for me. Much less side effects that other meds that do that I had tried.

I know more Lyrica is one thing they try for fibro or constant pain when it seems to be nerve related. About 6 years ago, they ran my dose up to the 300mg a day that is usually prescribed for constant pain. It did little other than give me the jitters and mess up my eyesight more. I finally took it back to the 75mg BID. I have added 300mg of Neurontin to my daily meds. I have a script for Neurontin as a PRN because I have some terrible burning nerve pain on the back of a shoulder from my neck being split open twice to work in it. It has always helped with that and an occasionally trigeminal nerve pain that runs up over an ear and onto my scalp in the middle of the night sometimes.

If the Neurontin seems to help, it may definitely indicate that this is nerve based like fibro is suspected to be.

As I have researched fibro, I have read that when the muscles/tissue hurts, people can’t stand to be touched on it. I have reached a point I can barely stand to lay down. When I lay on my back or side, I can feel every wrinkle in the sheet or blanket under me. It hurts and burns.

The burning muscle pain has gotten so bad, I don’t really think about the pain in my shoulders, knees, and hips from the PSA, but it is still there.

I told my wife I suspected I had fibro. At least she was honest and said she didn’t think there was a damn thing they could do about, and she is right,

I have got to come to some kind of understanding with my brain and body, I was already down because I think about how much the PSA has taken away from me. There have been so many things I cannot do anymore that I want to do. I spent an afternoon putting a wire antenna back up for my HAM radio that I had to take down because I had some trees trimmed, That took almost 5 hours and should have taken 2. I took my time and stopped and rested when I needed. It was nothing strenuous, just work. I finally got it done, but paid for it for a week. The only relief I have been able to get for 3 or 4 hours is after I sit in my hot tub for 30 or 45 minutes.

I had told myself that I didn’t care if something I needed to do was going to make hurt for several days, I was just going to do it! But, with this new pain, it is getting impossible to even move. I shuffle when I walk because my pain level is so high. I groan each time I get up and go to the bathroom. I don’t sit anymore, it is more of a controlled fall to the sofa.

I have dealt with the PSA pain for 6 years now because I had to put up with it to survive and keep going. I have never had what feels like full body pain! My wife asked me where I hurt when I woke up this afternoon and she heard me groaning as I sat up. I told her from my hips to the top of my head.

Sorry, everyone, I just need to vent. Any ideas or suggestions would be appreciated!

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Sounds bad but surely good old, poorly controlled PsA is the cause.
Been through the same recently but since being on Rinvoq it’s all settling down.
When my PsA flares and my tendons are inflamed my muscles hurt. Everywhere!

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I have had dobro since 1991. Fibro can make your muscles hurt. Getting a hug can hurt during a flare. It can make it feel like you are moving through mud. Have you been diagnosed? That’s an important first step. It can be treated with meds, diet if you choose and believe it or not moving helps. So stretching and exercise dr. Approves.

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Welcome back @Allan! Always good to hear from those who have been gone for a while. I think you are the first one I’ve encountered that is also on Rinvoq. I agree, the flares cause tendon inflammation and muscle pain all over. How do compare Rinvoq with your own history of meds? Side effects?

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Thanks Amos. Ive been on Rinvoq for 6 weeks and keep improving. The previous biologicals I have been on all needed a side serve of prednisolone to give me some relief

After having my second shoulder replacement last year, going back on the biological with no pred I descended into the worst flare Ive experienced in my 75 years. Since being on Rinvoq my spondylosis improved and the improvement has extended to my hands and feet now. Ive improved sufficiently to be able to cross my fingers in the hope it continues!
Have you been on Rinvoq long?

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Tomorrow will be 1 year on Rinvoq. For me, it seemed to work in spurts always improving even after 6 months. It has likely peaked in its effectiveness so I can now sort of figure out what life is like. I certainly wouldn’t say that I am in remission, flares still come and go at various levels of intensity. I’d say that it has taken away the “squirming in pain” issues…things are quieted down when not in a flare. Most flares are self induced by too much physical exertion on my part. Hopefully it is fighting progression of PsA. I suspect that if I went off of it, I would be in near non-functioning condition. I do seem to be more prone to barometric pressure changes both up or down. They bring on a headache and I never had headaches before. I would highly recommend that you just hunker down and stay on it for 9-12 months to really discover what Rinvoq might do for you. I doubt that anything else would give me more help. My rheumy was very confident that Rinvoq could be the game changer for many people with all sorts of autoimmune diseases allowing them (us) to stay on one med for many, many years.

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I would definitely encourage you to speak with your rheumy about this. They would definitely be the ones to theoretically diagnose.

I’m thinking. . . Since the physical end of things has been so rough, what about meditating or something similar. I’m just thinking of ways to help destress that aren’t all physical.

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I have been reading some older posts about severe leg pain. Wondering if it is PsA or Fibro. Sounds like a lot of folks have issues with leg pain, as they say, from the waist down. I have been unable to sleep more than an hour or two every night this last week. I am exhausted. I can’t find a way to put my legs to get any relief.

Pain meds don’t help. Muscle relaxers a little, I have got to get some sleep.

I’m heading out to the hot tub.

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You have so much going on and quite the list of past and present meds that obviously are not helping as much as you would like. Of course, you need to listen to your physician regarding any changes and use of prescription drugs but sometimes I wonder if we need a “reset”, a sort of cleansing from all or most of the meds to find out what our “normal” is. Too often, I think we are treating the side effects of going on meds or off and everything in between. Many of us benefit tremendously from the drug therapy but so much of it is experimental while trying to find the right mix etc. As far as the Fibro goes…I tend to blame my PsA for a wide range of aches and pains. While I might (and do) have large muscle pain, it might well be “Fibro like” but still be the radiating effects of enthesitis which is inflammation of the tendons connecting bone and muscle. @tamac, I suspect that you have enough PsA issues to set you up for all sorts of severe pain. Even something as simple as a PsA induced limp can cause hip and/or back pain as the body compensates for foot or knee pain. My back muscles are tight on one side trying to pull me away from pain and become painful…I’m sure you get my drift. The biologics are quite “logical” as they are meant to go to the source of the pain right at its core. I would humbly encourage you to focus on the source with your professionals because chasing pain relief on its own just never seems to satisfy. If I put it simply, (for my sake not yours) I can take a pain med for foot pain or take the stone out of my shoe. My hope is that you and your professionals can see past the pain and treat the cause. I’m in no way making light of the real pain that you have. Due to three severely herniated discs in my lower back, well before the PsA diagnosis, I learned that pain therapy, especially the meds that target nerve pain, can have huge mental/psychological side effects while giving marginal and temporary pain relief. The ever increasing/changing of pain meds can be a dangerous rut…been there! Since I’m babbling anyway, I find that when I am in a lot of pain, it is usually a “burst” of pain and by time I take something for it, it has settled down anyway. Others can correct me but I find that the priorities are: 1. deal with inflammation 2. rest and rest some more 3. keep moving 4. use only what is necessary for the “residual” pain that exists after the inflammation is dealt with (or in the waiting for meds to work) My apologies if this is just “babble”…sometimes we write for our own good! Peace.

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Thanks for the advice. I think as you do. I take no more for the pain than I need to rest, or need to be able to think. Working from home has given me a chance to be able to take a break when I need to do it, but some days I just can’t think due to the pain. On those days I try and relax and take a little if I need it. I made the decision months ago I would not make myself suffer needlessly.

That is what is troubling me now. As you say, often if I just wait, the pain will eventually die down enough to keep going. But for the past several months, the last few weeks especially, I cannot sleep because of the pain. First, it was the pain in my back and ribs. I could not stand to lay on either. I would struggle all night to find a position to sleep. I would eventually fall asleep, but wake up an hour later in pain and would have to move to try and find a new position.

Now, I don’t get that far. My legs hurt all night every night. If it spreads into my feet and heels, I can’t stand to put my feet down on my heels because they hurt when they touch anything. My legs don’t ache, they hurt. Like someone else said, I hurt from the waist down. I just lay and moan. Tossing and turning with no luck in finding a position that doesn’t hurt. The odd thing is, they hurt much much less when I am sitting up. Once I lay down, it is only a short time before they start hurting. Some nights I will just sit up on the sofa I sleep on and fall asleep that way, until I wake up from things hurting from sitting up.

I have found a combination of meds that help some. A little pain meds, and a lot of Neurontin seems to help. Last night I finally went to sleep about 2:00 AM. I woke up about 2:00 PM. I needed the rest and thankfully my wife didn’t interrupt it.

I think the PsA is the source. My hands and fingers are swollen more than usual and my feet feel swollen more than usual. The pain in my ribs feels like the costochondrisis I have experienced.

I am going to take a mini vacation next week. I get next Monday off anyway, so I am going to take Thursday and Friday off and spend some downtime assessing things. I think I will be touching base with my rheumy. I thin the Talts has had its chance. After two TNFs and two IL-17 blockers, I am going to suggest I try Tremfya.

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