Sorting it all out

[bunnymom]

Just celebrated my one year PMR anniversary. I find myself continually trying to sort my health concerns. In one year I have seen 4 Drs and 2 physical therapists, as well as a massage therapist. I believe I have myofacial pain syndrome on one side of my rib cage which has probably caused me to take a higher steroid dose than necessary over the past year, but who knew! I am now under going testing with a Neurologist who believes I may have a pinched nerve in my neck or a ruptured disk. I have been trying to get this figured out since last summer. I don't understand why Drs aren't on the ball about these "side ailments" that come with inflammatory diseases? If I can read about it can't they? Ok end of rant. Here's the question... after the PMR burns out does the myofacial pain go as well or does it remain? I see it is considered a chronic disease. Thanks for all of you for being my lifeline and sanity for the past year. I don't know how I would have managed without the information and support you all so willingly provide. xoxo and I had no cake at my PMR anniversary party cause I am watching my weight lol.

[DorsetLady PMRGCAuk volunteer]

Hi bunnymom,

Happy anniversary! 💐But no🎂. Sorry, can't help on the MFS pain, but sure others will.

As for doctors, think problem is in main stream medicine they are not taught to look at things holistically, they only see the specific problems. Sometimes I do wonder whether they actually see us as people at all!

Many are brilliant, doing a very difficult job in difficult circumstances, but then they're are others!

Hope you soon get some answers.

[bunnymom in reply to DorsetLady]

Made an appointment with my GP who is always sympathetic

Thanks

[DorsetLady PMRGCAuk volunteer in reply to bunnymom]

Good, my GPs have been sympathic, unfortunately previous one knew little about GCA, but learnt quickly with me. Current one is also very good, but unfortunately coming up to retirement age!

[PMRpro Ambassador]

I had MPS long before PMR. You are left to wonder if they are linked, they are caused by the same inflammatory substances, that has been shown in research, and it was a talk about that research that was the lightbulb moment for me - it validated what I had said for a long time. The guy who gave it agreed that for a lot of people they belong together.

On the other hand, the symptoms I had in the end were so severe an orthopaedic specialist assumed it was wear and tear and I'd have to live with it - no thought of muscle problems at all. The Pain Clinic doctor and a physio identified it quickly enough - and assumed that it was too simple an answer for bone doctors! MPS is a relatively new concept though and it alone can cause the "pinched nerve" syndromes. It should always be considered when the scans show "nothing" - muscles are invisible.

[bunnymom in reply to PMRpro]

Will let you know what shows up suspect nothing

[bunnymom in reply to PMRpro]

Drs here have never of mps. What a surprise. I smooth the tender places out myself to get relief. Drs now think arthritis in back is causing rib cage pain. The comment I hear from every single one about PMR is oh you take high dose steroids and then the pain goes away. I told the last dr that's like telling a diabetic You'll take insulin and your troubles are over.

[PMRpro Ambassador in reply to bunnymom]

Good for you! Because it is the same...

MPS is a fairly new concept - but research has shown it is due to the same cytokines that cause PMR, just they are localised in the trigger points. Can't give a reference as it was an invited speaker giving the talk. But in the UK anything like that is regarded with deep suspicion for years...

[9lives]

Hi happy anniversary x

I was diagnosed may 2016, I too suffer from some sort of muscle spasm pain, usually in my ribs or lower abdomen. It comes and goes and stays for around 10-14 days. It can be quite excruciating at times and I have to roll to get out of bed . My rhummy ran loads of tests but all came back negative.

Thanks to this site I have learned a lot about PMR and all that can be associated with it.

Like you at first i ran myDr and she upped my steroids but now I just wait for it to pass, and I have noticed that each time it comes back it is less painful.

I do hope things improve for you . I don't know if it goes when the PMR burns out. My rhummy did suggest muscle relaxers but I didn't like the sound of those, When it's bad I run a bath with salts which seems to help.

Carole

[bunnymom in reply to 9lives]

I too love a bath.

[Zacsmimi in reply to 9lives]

My muscle relaxers help a lot. Take only at night. carisoprodol

[bunnymom in reply to Zacsmimi]

Thanks I will ask about them. Nice to hear from you.

[Zacsmimi]

I have back spasms. But I had them before PMR. I do take muscle relaxers, as needed. Maybe twice a week. Our anniversary dates are very close... my first one was last month. My medical bills for 2016 blew my mind. THank God insurance covered a lot ( after my $6,000 deductibles and copays). I found out yesterday that I have something wrong with the glands that produce oils for our tears. Which gives me dry eye and therefore, blurred vision. I came home really frustrated but decided that was a waste of time, and I will just do what I can and manage. I dont have the energy to spare. If you do ever get it all sorted out, congrats. I don't know if I ever will.

[PMRpro Ambassador in reply to Zacsmimi]

Here are some links with cost-free advice for managing meibomian gland dysfunction:

aapos.org/terms/conditions/141

nhs.uk/Conditions/Dry-eye-s...

The second one has a set of pages with explanations of what it is you are dealing with and what makes it worse.

[Zacsmimi in reply to PMRpro]

You never cease to amaze me. Thank you!❤️

[bunnymom in reply to Zacsmimi]

I don't think I have ever felt so medically helpless and left on my own.