So fed up of pain!!

[MissMarvel87]

I have been diagnosed with fibro for just over 2 years now. I had a car accident in October 2019 and it took a long time for my shoulder to heal, I had damaged my rotator cuff. They think this was the start of my fibro. In May 2021 I saw a full length picture of myself and sobbed, but it gave me the boost I needed! Now 18 months later I have lost 4.5 stone, and maintained the loss for over 6 months, I gave up smoking 1 year ago and at the start of the summer I felt amazing! I was going to the gym 4-5 times a week, cycling 20-25 miles on a weekend, walking the dog 3-5 miles, 3-4 times a week, met a new guy who is amazing, and I was loving life! Then around August 2022 I started having issues with my shoulder again, pain in my elbow and in my upper arms, fingers and toes - I can't even open a bottle of pepsi without help!!
The docs drew blood and the rheumatoid markers came back very high, but told I don't have arthritis yet. They sent me for an MRI and I have bursitis in my shoulder and elbow to add to my ever growing list. I had a cortisone injection in my shoulder and the elbow failed, they are going to do one under ultrasound guidance. I am miserable with the pain, I will often get both upper arms feel like I have dead arms and can't get off the sofa properly, I wear a splint on my wrist and elbow and feel like a hypochondriac most of the time, then a test will come back saying there is something genuinely wrong and I fell better that it's not all in my head, but I just want all the pain and issues to stop! I'm taking too many meds for different things and as much as I try to put a smile on my face and just try to get through it day by day, I feel like a duck - calm on top and peddling away like mad underneath!
I don't know what I hoped to get from this, but felt like a rant and thought like minded people might have some suggestions, or just to offload any stresses or rants you have too! I tell myself every day when I get up - You got this, you can do this! But I'm starting to lose my temper and motivation with myself for saying it, especially on a bad day!

 

[Harpy]

Missmarvel87, you should be so proud of yourself for coming back so strong after your accident.
Congratulations on losing such a huge amount of weight and keeping it off. Now that is hard to do , I lost 38 kg back in 2004 and pretty much kept it off , well apart from the 4/5 kg float that’s comes and goes with my prednisone .
Sorry about the duck but but I did have a little giggle , I have not heard that phase before.
You will have some very knowledgeable people on this forum with some good input for you.
But no matter how hard it gets we do keep making it through each day. Some days I don’t know how.
But for me is today I know will be a gods few days as I just seen my osteopath and apart from his helpful treatment he is the perfect listener and we are very good friends and can read me like a book and knows I self harm when I can’t cope. Kind of funny as my husband doesn’t know I do it .
You are strong just keep swimming .
You will get more helpful tips when others chime in . Take care.

 

[cookiebaker]

I'm taking too many meds for different things....

not sure what you are taking meds for, but many can cause more problems than they solve.

I tried a bunch over the last couple of years - gabapentin, duloxetine, fluoxetine, nortriptyline, and sertraline (maybe others too, i forget) - and had more undesirable side effects from them than any real help - everything from utter exhaustion to tremors and a lot of other things in between. I finally gave up on the "traditional meds" and feel slightly better for it.

I do currently take 4.5mg of naltrexone and might be going slightly higher soon... it did seem to help for a while but lately not as much - not quite sure why, however.

Might be worth talking to your gp about your meds and what could possibly be changed and/or eliminated.

 

[Forgetmenot]

I came here today for a moan.i suffer with my shoulders.and today I feel backwards and pulled both my shoulders.
I cant tell you how much it hurts. I've had a virus which left me coughing for 6 weeks.had 2 weeks good then got a chest infection Christmas day.
So been coughing ever since.thats really hurting my shoulders. So that's another 6 weeks I would think.imnsorry your hurting .I can't even brush my own hair.xx

 

[Harpy]

I am so sorry to hear you fell. That’s my greatest fear. I hope you feel better, go to the dr and get checked , always have it on record with your doctor, you may need a scan. Life’s hard for us but I hope your feeling abut better soon .
I obviously got a bit of sleep last night as I must have been scratching my rash in my sleep, I have got blood all over the bedsheets and my pjs.

 

[Forgetmenot]

Ty..do u have eczema?

 

[Harpy]

No not eczema, some how I got a staph infection on my arm and the itch is crazy, the cream helps but got to keep applying it a lot. Be another day or two before antibiotics kick in.
How are you feeling today? Are your shoulders any better.

 

[Forgetmenot]

Flipping sore slept on my right side,which I never do.but I'm pulled something. I can move it ok.bless u having that infection isn't nice.i do hope u get better soon doll x

 

[Harpy]

Oh forgetmenot, have you been icing it? Or heat packs?
I love heat, the hotter the heat pack the better for my spine.
My moms both shoulders are no good , they can’t replace them as she can’t go under general anaesthetic because of her lungs. Hope you sleep better tonight. Take care.

 

[MissMarvel87]

I am proud of myself, I wallowed for a while and then gave myself the kick up the backside I needed, I feel loads better for it and for the first time in years can appreciate who I see looking back at me in the mirror. I’m going to go for another ½ stone or more in the spring, in the hope that the pain in my shoulders and elbow eases and I can get back on my bike. I miss my long rides!

Haha, the duck thing is one I’ve heard my mum say for years and some days it feels very much like this!

Hop you get the help with the osteopath, and sometimes it is helpful to talk to someone who isn’t too close to you who can understand what you’re going through. I haven’t self harmed before, but I find myself in the need for some pain to decompress (which I know seems so strange when we are in constant pain), but I usually go down the route of new piercings or tattoos, which I can’t afford either of at the moment, but they are a form of pain therapy for me that I can control and enjoy the result of for years to come and know that they are a coping mechanism and art!

Thank you for your reply and I hope you get more help too

 

[MissMarvel87]

not sure what you are taking meds for, but many can cause more problems than they solve.

I tried a bunch over the last couple of years - gabapentin, duloxetine, fluoxetine, nortriptyline, and sertraline (maybe others too, i forget) - and had more undesirable side effects from them than any real help - everything from utter exhaustion to tremors and a lot of other things in between. I finally gave up on the "traditional meds" and feel slightly better for it.

I do currently take 4.5mg of naltrexone and might be going slightly higher soon... it did seem to help for a while but lately not as much - not quite sure why, however.

Might be worth talking to your gp about your meds and what could possibly be changed and/or eliminated.

I am taking nortriptyline too and have found it does help, I notice the difference if I miss a few days that’s for sure! Codeine and etoricoxib (stronger anti-inflammatory) I take for the pain, but I also have other health conditions that need other medications as well as CBD capsules and Vit D pills. Feels like I rattle when I walk sometimes!

I haven’t heard of naltrexone before, but hopefully it does help you.

I have had a meds review recently, and with my weight loss and quitting smoking (which are huge factors on one condition), I have been able to half the dose on one of my meds, which has made my need for bloods to check my kidneys lower, so there have been some silver linings.

I have an appointment with rheumatology again in 10 days, so hopefully they’ll have some ideas on how else to help & refer for physio which I am not a fan of!

 

[MissMarvel87]

I came here today for a moan.i suffer with my shoulders.and today I feel backwards and pulled both my shoulders.
I cant tell you how much it hurts. I've had a virus which left me coughing for 6 weeks.had 2 weeks good then got a chest infection Christmas day.
So been coughing ever since.thats really hurting my shoulders. So that's another 6 weeks I would think.imnsorry your hurting .I can't even brush my own hair.xx

Oh no, hope you are OK, nothing worse than having a fall and jolting yourself! As Harpy said, hopefully with some heat and/or ice that will help you some. This virus & cough has been doing the rounds here too, hoping that it will skip me, I have also been lucky enough to avoid getting Covid too. Dreading getting either! My son had Strep A and seeing him in bed for a week with no energy when he is usually really fit and healthy made me wish more it skipped me lol.
Really hope your chest and cough clears up soon and allows your shoulders to heal. Wishing a speedy recovery x

 

[Forgetmenot]

Ty doll x

 

[cookiebaker]

I am taking nortriptyline too and have found it does help, I notice the difference if I miss a few days that’s for sure! Codeine and etoricoxib (stronger anti-inflammatory) I take for the pain, but I also have other health conditions that need other medications as well as CBD capsules and Vit D pills. Feels like I rattle when I walk sometimes!

I haven’t heard of naltrexone before, but hopefully it does help you.

I have had a meds review recently, and with my weight loss and quitting smoking (which are huge factors on one condition), I have been able to half the dose on one of my meds, which has made my need for bloods to check my kidneys lower, so there have been some silver linings.

I have an appointment with rheumatology again in 10 days, so hopefully they’ll have some ideas on how else to help & refer for physio which I am not a fan of!

nortriptyline gave me tremors - so bad i had a hard time eating if I couldn't stab my food with the fork to keep it there.

I would suggest trying to get off the codeine if you can.. opiates are bad news in general (addiction), and really do not do that much for fibro pain. If you have been taking it long term, it will not be easy to stop, but your health would be better off for it.

I came here today for a moan.i suffer with my shoulders.and today I feel backwards and pulled both my shoulders.
I cant tell you how much it hurts. I've had a virus which left me coughing for 6 weeks.had 2 weeks good then got a chest infection Christmas day.
So been coughing ever since.thats really hurting my shoulders. So that's another 6 weeks I would think.imnsorry your hurting .I can't even brush my own hair.xx

so sorry to hear you are hurting. Hope you are feeling better soon!

My partner fell hard over the Christmas Holiday - we think he may have cracked a rib or two..

 

[sunkacola]

I want to second @cookiebaker 's advice to get off the codeine. It is very highly addictive, and if you have taken it for a while you are addicted, guaranteed. You will need to wean off slowly with your doctor's help and supervision. But please do it. Taking narcotics is not a good way to deal with any pain that lasts more than a day or two. Please believe us on this.

If you have not already done so, please read my advice post. There are many things you can try that are not medication-based, that might help you a lot more than taking codeine. It also has suggestions for coping mentally, and it is clear that you already are working strongly with that, which is fantastic. It can make a difference. And yes, there will be days you lose your patience with it and/or get angry. that happens to all of us. But those don't have to be frequent days.
And...PS....you are not a hypochondriac, from what you have written, but a very strong person who is doing your best.