Newcomer

[youngatheart]

I have finally found my people! After browsing through and reading some threads I decided to introduce myself, there are others who get what I am going through. I am a 47yo female who has lived with chronic pain for over 20 years. Took me 12 years to find a doctor that took my complaints seriously and to start the road to discovery. After years of steroid injections, in 2018 I underwent hip surgery; in 2019 I had my first lumbar spinal surgery, I then had a surgery or two every year up until June of 2021. The ortho doctor was recommending surgery on my shoulders; the pain management doctor I was seeing wouldn't prescribe ANYTHING for pain and was suggesting more steroid injections in my neck and another surgery; I couldn't get an appointment with my PCP; I ran.
Now, to be fair, I do have nerve damage in my neck ( leading into my right arm ) and a torn rotator cuff. However, after all the other times, I just seemed to deteriorate. I became weaker (even with PT), pain intensified and became more widespread, and sleeping is a luxury I get once in a week, lol.
I found a new, young PCP who isn't afraid to think outside the box, listens and takes what I say to heart, and documents everything, including pictures in my files. She started with bloodwork, running tests no other doctor had ever ran or even mentioned. Which led her to referring me to a rheumatologist. Unfortunately, I am not so sure I agree with everything he said. After doing my own research I do believe his diagnosis is correct and that most of his information was factual, I do not believe that there is nothing that can be done to help better my pain.
He recommended the usual, reduce stress and anxiety, exercise, and improve sleep quality. These recommendations make me . If only I could! More on that another time.
I just wanted to give a little background on myself and say how wonderful it was to find this community, thank y'all for letting this woman know she's not alone. Good night.

 

[JayCS]

Hi @youngatheart and welcome! Great you're reaching out.
I've recently added a young GP to my array of docs. Haven't yet completely said goodbye to the old one, cos he was more naturopath, but "tired", does have ideas, but has difficulty following them up.

I do not believe that there is nothing that can be done to help better my pain.
He recommended the usual, reduce stress and anxiety, exercise, and improve sleep quality. These recommendations make me . If only I could!

Well, both of you are dead right there, I think. Problem is docs can just recommend and don't know how, cos that's an extremely tricky business, so can't even begin to teach us.
I bet you've find sunkacola's advice post already - if not, it's here.
Aside from that if you'd like to write what you've tried already for stress, anxiety, exercise and sleep, we can get more specific about what there still is to try, which is tons.

"Exercise" is one thing however I'll start with a bit of specifying: If we aren't able to "exercise" in the sense of workouts and walks, then we need to start with "exercises", meaning esp. stretches, but starting as low and slow as necessary to minimize backlashes. And at the same time treating pain points manually with pressing, massaging and stretching those specific areas carefully in a large variety of ways. Something good, gentle, listening manual therapists and youtube physios can help us with. Maybe we'll never get beyond that, so it might stay a workaround, our own kind of exercise.

Similarly there are lots of workarounds and helpful possibilities for stress, anxiety and sleep.

So I hope we can do more for each other than just feeling understood, important enough though that is to take the first brunt off it all!

 

[sunkacola]

Hi @youngatheart , and welcome to the forum. We are glad you are here, and you have found people who understand chronic pain. Do you think your pain comes from all the surgeries and so on, or do you think you have fibromyalgia? Another possibility is that if you used steroid shots regularly for years, your pain may be exacerbated because your body became dependent on the steroid. Obviously that's not the whole cause, though, because you got the shots because of pain.

Whatever the case, you can find support here, any time.

I would like it if you are able, or when you are able, to explain why exercise, reducing stress and anxiety, and improving your sleep are not possible. Maybe we can help because many of us have had to find work-arounds problems we had with those things.

Eating a very healthy diet will also help (if you are not already doing so), and if you haven't tried a food elimination diet to see if any foods trigger more pain, that might be a good idea.

Identifying and eliminating -to the best of your ability - the things in food, environment, activity and so on that are triggers to more pain is a very worthwhile pursuit.

Let us know how we can help!

 

[youngatheart]

Hi @JayCS and thank you for the welcome.

Short of kicking my family out of the house and shutting myself off from the world, I have tried: meditation, medication, guided meditation, music, therapy, and a slew of other things to try and alleviate stress and anxiety.

Without getting to deep, I should share that I have Complex PTSD, still untreated. Finding a counselor/ therapist that I feel comfortable with has been extremely difficult. When the pandemic hit it became nearly impossible to even get an appointment. I am a huge supporter and advocate for therapy and know that I would benefit greatly if I could find the right fit.

As for exercise, I do what I can when I can. For years (most of my life) I have ignored my body and it's limitations, pushing myself to survive. I ignored the doctors when they told me to slow down due to the damage that had already been inflicted. It has taken me years to learn to let go and stop pushing ( I still struggle with asking for help), to learn to listen to my body. Even on my worst days, when I just want to lie in bed and give up, I still try to move every 20 minutes; even if it's just a short walk through the dining room and kitchen and then back to whatever spot has become the spot at that time. Sometimes I am more comfortable sitting propped up in bed or lying down; other times it's my recliner or my spot on the couch. I go out at least once a week with a dear friend of mine. She picks me up and we run to the store, the bank or whatever errands have to be done that day. We rarely leave our local small town; except once a month to the next town over where our pharmacy is. These weekly outings drain my social battery for days! This makes it difficult to conduct business calls (e.g., scheduling appointments); it makes it difficult to communicate with family both in home and far away; and to continue to socialize with friends. My dear, dear friend (whom I mentioned earlier) is always trying to pull me out of my comfort zone. Anyways I have gotten off topic, my point being is I stretch several times a day; different stretches, different body parts, at different times, on different days. Depending on what joint, muscle, nerves, and area of the body are hurting the most at that day/time whilst being extra careful not to exacerbate or cause a flare up elsewhere.I move my body as my body tells me it needs me too.
Some days this is just a short few laps around the house several times a day; going outside for even a few minutes with the dogs (more days than not), and simple stretches. Other days I can walk (with a cane) around the yard or at the park with my friend (must specify this happens very rarely as weather conditions must be precise ☀☀for me to spend any amount of time outdoors). Finally, very, very, rarely do I feel well enough to go out shopping, to dinner, or what have you with my adult children or friends. And let's be honest when it comes to my children I go no matter how I feel: even if I am gritting my teeth behind my smile and trying to mask the pain from them (Which I have done all their lives.). Of course as they have gotten older that has become much harder, however they have also become more understanding of what I am going through.

Ahhh sleep my dearly departed friend!!

You ask what I have tried and I dare you to please tell me something new!
Melatonin, Valerian Root, and Kratom are just a few herbal supplements I have tried. I use Benadryl on the reg. Adjusting temperature in my room, white noise, guided sleep, meditation, different positions, setting a scheduled bed time, avoiding naps during the day (naps also rarely happen), turning off all electronic devices an hour before bed, I could go on but I think you understand .
Most of the techniques I have tried work for a night maybe, and it's a stretch, two. So then I play what's going to work this time. Until I am finally blessed with a great night's sleep. This is often cut short however so I still very rarely feel completely rested. Sensory issues and my PTSD make it difficult to wear ear plugs, headphones, etc. Shutting my bedroom door is not often an option, we heat our house with a wood stove.

This post has taken me all day to write, working on it off and on, and to be completely honest I am ignoring the cramping in my hand to finish it before I finally try again to get some sleep. * Tried bedtime but pain had me moving. So I decided to finish up here.

I feel I have rambled but you asked
Have a blessed night/day.

 

[youngatheart]

Hello @sunkacola Thank you for welcoming me to the forum.

The pain I experience is from a number of reasons. First and foremost having hip dysplasia at birth that went untreated for a year. Numerous childhood injuries (e.g. broken bones, dislocated joints), childhood physical abuse, adult physical abuse, numerous car accidents, physical labor, and genetics.
These occurrences have led to nerve damage, arthritis, carpal tunnel, tendonitis, herniated discs, and other issues. On top of this, yes, I do believe that the diagnosis of fibromyalgia is correct. It explains the rest of the pain I feel that there is no other explanation for, i.e. skin feeling as if its on fire.

As for exercise, stress/anxiety, and sleep please read the response i posted to JayCS for some info. I will clarify here that my brother and his girlfriend have moved in with me, to assist with household chores and financially. I have become caregiver to my elderly uncle (who we believe has early stage dementia). My 21yo child has recently moved back in. They all brought their dogs with them, so I now have 5 dogs (one of which is only 5months old). This is all stress and anxiety inducing in itself! I have been unable to return to work since 2018. This of course causes financial strain which increases my stress/ anxiety. Have been fighting for SSD and am in the process of preparing for a court hearing ( stress).

I appreciate you asking how y'all can help, and to be honest just being able to share and read others posts has helped tremendously . I am always interested in ideas that might help me manage my pain better, and willing to try almost anything (if finances and insurance allow lol).



Thank you for reaching out and have a great day.

 

[sunkacola]

@youngatheart , Well, it sounds to me as if you are truly doing all that you can. You didn't mention diet, but hopefully that is as healthy as your circumstances can make i, and no doubt that varies a lot.

Good grief gal, you have been through the wringer physically! And you obviously have learned how to manage it the best you can, and I tip my hat to you for that. It takes courage and strength to do that, and you deserve a medal.

Of course you can come here and write as often as you want to or can. We even have an entire section dedicated to threads that start with someone just wanting to vent and complain. If you want suggestions at any time, just ask. If you just want to vent and don't want anyone to give you suggestions, just say that in your post and you will just get empathy. Others here are in similar situations or have been. I am glad you found us.

 

[JayCS]

You ask what I have tried and I dare you to please tell me something new!

Yup, I can see that's gonna be a tough challenge!
Cos I can see how you can sense into your body, have tried a lot, and PTSD alone is a big one.

And like you said in your first post, I definitely know very well where you're coming from and are... Many of my posts take me all day to write on and off, too, for sleep I had to identify and tackle >30 triggers like yours, supps for sleep I take >10, for exercise I do what I can when I can, used to ignore my body too much.

Differences between you and me are

• that I did often find therapists and online support that could help me in parts.
• That I didn't take as long to learn to slow down, because my full flare came with a jolt and ripped me out of my previous life.
• That I never want to lie in bed (cos it's worse for pain and sleep) or seriously give up (cos I've learnt radical acceptance more and more in my life, and now the semi?-final version).
• That I can't afford any social outings any more: I'm down from maybe 2 hours to people usually having to come to me - only the nearest and dearest - and me having to "throw" them out or buzz off myself after an 60' or 20 mins.
• And that I never feign painlessness, especially with the kids - I can stretch it without me or anyone except my wife noticing and then often just going, but learning more to start saying gotta go soon, if I realize (which I don't, thank cortisol), but my wife takes over with that (saying "you've gotta go") and with the socializing with the kids and friends. I can sometimes stretch that time with breaks, like socializing 20', retiring 30' etc. And I look for quality time for interacting, like with everything - 20 minutes of real time can go a long way without lashing back at me for hours or days. My people have got used to it, even the grandkids - prefer 20 minutes of me to none of me.

But this is nothing new for you, just you've made different decisions to me.

So: new for sleep? Well, the things you list seem to be a whole lot of the usual ones, without some of the new recommendations by sleep experts like Andrew Huberman and Hugh Selsick based on newer studies, have you been thru those yet? They made quite a difference for me:

• Looking to the sun or a daylight lamp for at least 10 minutes "first thing" (inside the first half hour of waking), and in the afternoon again so the brain gets a good circadian rhythm, cortisol is used up, melatonin builds up. 20' to 60' if overcast.
• Getting up early, not lying in.
• Going to bed when you first start feeling sleepy.
• Not falling for the wake spike that may come one hour before sleeping time.
• Aim for 10 to 6.
• NSDR/yoga niedra to incite or substitute sleep (I like Ally Boothroyd best).
• Trying to keep eyes open, sometimes that trick helps (but seldom).
• But getting up and out of the bedroom if we're awake (for "10 minutes").
• Of course not doing "anything" but sleep in the bedroom.
• Supps: Myo-inositol, apigenin, magnesium threonate or bisglycinate, GABA. Not melatonin or valerian, careful with L-tryptophan and 5-HTP. Glycinate and L-theanine work for him, but paradoxically for me, same as taurine.

That's excerpts from hubermanlab toolkit for sleep.

• And "screen curfew" you say one hour: I say 3h if 1h doesn't make enough difference. All lights in the evenings dimmed, low, "red" not "blue". And night mode and dimming the screens is definitely not enough, I wanted to believe it was for a long time.

• "Guided sleep" or "guided sleep meditation" (not sure, cos you had a comma between): Does that mean you use NSDR/yoga nidra? Not sure fire for me, but 80% certain now that I'll drop off soon, and in earlier fibro days a good substitute - 2h of NSDR is more restorative for me than 2h of shallow sleep or dozing....

And if you're in to trying really anything:

• cold showers help me a treat to sleep, even in the middle of the night. (Cold can be relative if you're not used to it. Or alternate or warm if that's better, as the research actually says...)

• Waking up at 3 in my case was often a histamine reaction until I went low histamine, but GABA and cold showering gets the histamine and my chatterbrain (incl. anxiety and bad thoughs) down, it's so good to start "afresh" and warm up under my 2 usually pretty thick duvets.

The other supps aside from Huberman's that were new but useful to me still are

• glutamine to counteract the large amount of GABA I need for serotonin, PQQ, CoQ10, quercetin, luteolin, honokiol, NAC (had to switch to glutathione tho), and old favourites that long helped me are no longer necessary at night: an overdose of passiflora, rhodiola, but I take them in the daytime now for blood pressure... But maybe you know these all too? (For a time an antihistamine I needed helped sleep, but then I realized it was dulling my head and causing a sinus headache in the morning.)

That's some of the general things in my toolbox that very much work for me, still with quite a few sleep breaks (3-6), but usually only <1h, and always feeling restored.
But for specific insomnia triggers like pain: a great help was to regularly get all my local pains down to zero. But I can see your nerve damage is probably taxing for sleep, or what exactly is keeping you from sleeping, do you know?

 

[male]

Hi I'm a 61 year old man and I have just been diagnosed with fibromyalgia. I totally agree with all of you exercise doesn't help with fibromyalgia for me it makes it worse. I was in unbelievable pain and it took ages for anyone to believe me. Doctors saying it was sciatica I've had sciatica in the past and it was totally different to this pain. It seems to go on for weeks and weeks and all this time you are in pain. I went to the hospital many times after phoning the NHS helpline. X-ray scans nothing shows up so why am I in so much pain. The put me on tramadol but the pain was still there. Finally a doctor at the hospital tried me on nerve blockers pregabalin and after a couple of weeks the pain went away. I have tried playing tennis again but I can only manage an hour then the next day I'm in pain but not as bad as before. The worst advice from a GP was to walk the pain off, that is so hard when you are crying in pain every hour of the day barely able to move.

 

[sunkacola]

I totally agree with all of you exercise doesn't help with fibromyalgia for me it makes it worse.

Greetings, @male , and welcome to the forum.

The thing with exercise is that it needs to be the right kind in the right proportions, and done the right way and so on. It's not true across the board that exercise makes fibromyalgia worse; in fact, the right kind is very helpful. The key is finding out what kind of exercise is best for any individual. And even more important, it is learning to listen very closely to your body so that you know when to quit.

I think it's very hard for anyone who has been an active person to learn that last part, because we are used to working our bodies hard and only getting stronger as a result. Learning how to quit is hard. Changing to a completely different form of exercise, which maybe at first you don't like as well, is also very hard.

As someone who has led a VERY active lifestyle, I am all too familiar with how hard it is. But I can also attest to the fact that, if you do the right kinds and levels of exercise for your body....and for your body's needs as they change day to day...it will help, not hurt.

Moving too much or in the wrong ways will result in more pain, definitely, but not moving at all is deadly.

Good for you if you are playing tennis again! I suggest that you don't even try to do an hour, but try playing for a half hour or even less, and see how that goes. Or maybe even just practice some swings, gently, without a ball, and see how that goes. For some people with fibro, a slow walk around the block or the yard is enough; others can do a marathon if they are careful. It's all a matter of finding out what works for you.

What is never, ever a good idea is to push through pain and force your body keep going. I have a rule for myself that the moment I feel the very first twinge, I have to stop. Now. It's hard to do that, because sometimes that first pain comes after 5 minutes and I want to say, "Oh come on, really?" But I quit. I cannot do what I used to do and I don't like that at all. None of us likes it, and we don't have to like it. We get to hate it sometimes if we want to. But accepting it as reality and adapting how we live accordingly is the best way to manage it.

I hope this forum is helpful to you. That's what we are here for.

 

[male]

Thank you for replying to my message, I have been stretching after tennis and that does help also the club has a steam room which helps alot. I will take your advice and try different ways to get stronger. I am a bit worried if I come off the pregabalin that the pain will return because I could barely move when it was at its worst.