Back pain is holding me back

Yes, have the lower back pain too, for several weeks now, waiting to see Rhemy again, but she is useless,....

Everyday is different, today woke up with new groin pain as well, and all I did was bend down yesterday to look closer at a flower!....what aprice to pay.  I may go to Physio, but as Eileen says "interview" them first to see if they are familiar with our problems.....but don`t know yet if that`s allowed!...The receptionists usually think they know everything....but don`t want to make myself worse!

Seems like we`re all in the same boat....a rocky one....good luck to one and all fighting this PMR battle, that comes with other problems too!....

Groin pain could be bursitis - don't let it get too bad.

If it is bursitis...where do I get that treated please.... unfortunately  though we don`t have such good people here as you do!  Thank you...

Speak to your family doctor and point out that bursitis, especially iliopsoas and trochanteric bursitis, is very common in PMR. Or perhaps it would be more accurate to say that they would be if we were all examined with ultrasound or PET imaging when diagnosed! 

The source of my info is a new book out on PMR and GCA, edited by Dasgupta from Southend in the UK and Dejaco fromGraz in  Austria, which I have spent this afternoon reading. So not just off the top of my head!

It depends where you live but steroid injections, which are probably the best approach, are available in the UK , even if there is a bit of a wait. My GP here will do the injections but she is rheumatology trained, that may make a difference. Either a rheumatologist or an orthopaedic specialist would be the obvious doctors - but that doesn't always follow.

 

Thank you for that info....I often see the name "Dasgupta"  about pain ect....is the book available to buy?  I have complained to my library that nothing is available on PMR, the librarian has put it forward and requested something....don`t hold out much hope, what with all the "cuts" .....but have tried.  Thank you

Yes - in the UK it was said to be available in May but someone who ordered hasn't had a copy yet (no idea where she ordered it). i found it on Amazon and my daughter ordered it an brought it with her yesterday - it was already available there a couple of months ago. 

A warning though: it isn't a book for patients unless they have a science/medical background. It is basically scientific papers from a range of top experts about several different aspects and some chapters are VERY technical even for me. Perhaps the best use for a patient to have a copy for is to brandish at their doctor who is disagreeing with best practice. But there are still things in there that we as patients would say weren't entirely correct - and there are contradictory statements in different chapters. It isn't really a handbook on how to manage PMR/GCA. It just presents accepted stuff all in one place.

That is interesting about your friend, Faye. In the last few months I have been getting sciatica which is awful. It then goes away, but every time I try and reduce the pred it comes back. I just have to take the lower dose one day and it is back the next.

I was thinking about asking how many PMR sufferers had dealt

with a bout of sciatica.  Maybe it's just more common than I

knew.  Mine hasn't totally gone away either.  It's not too bad

but always there.   That was the worst pain I think I've ever

felt.  The sciatic nerve is the largest nerve in the body and

when it gets pinched it is excruciating.  I've had PT and

went to chiro but none of that was a cure.

I cannot decide which is more painful sciatica or the PMR before I was diagnosed! I wonder if it is because our blood vessels are compromised and are so not feeding our muscles properly, which then clobbers tendons, ligaments, bursa and the sacroiliac joints. My sciatica is caused by an inflamed sacroiliac joint pressing on the sciatic nerve, although I have pain from the one on the other side too, but no sciatica. 

Hands down....no contest....sciatica was waaayyyy more

painful than anything I've ever had....well maybe childbirth

but that didn't last as long.   My kids are all in their 50's

 we didnt have epidurals.....did it the hard way....  I have no

idea why sciatica started, what I did that may have caused

it,

I am blaming the PMR for mine. I have to blame something! 

Hi all

Got a bit more time to explain why I recommended Bowen.

Below is an extract from the following: (could not produce it all too long).

University Hospital North Durham Chronic Pain Services

What pain treatments are provided to help me?

The consultant at UHND Pain Management Centre here at the NIHP Durham will carry out an assessment and produce an individual Treatment Plan. This will consist of one or more of the following treatments and services:

Acupuncture, Bowen Technique, Physiotherapy & Corrective Exercise

Counselling, Psychotherapy, Psychology & Sleep Support

Wellbeing & Self-Management Mentoring

Now the thing is that getting a referral to a pain management clinic, means at least a wait of six months and the pain has to be chronic.

Bowen - you book for three sessions - one hour per week for three weeks.  If there is no improvement after those three sessions, it is not going to work for  you and the Bowen Therapist will tell you.

I was cynical - but I did try it and it worked for me. Best money I had spent in a long time.

We had the therapist to two different support meetings and other PMR people gave it a whirl.  However, what also happened was that a couple of family members who accompanied the PMR people also tried it for entirely different reasons. 15 booked sessions and of that number it worked for 13. Not bad odds.

But if you do decide to check it out, make sure you google Bowen and find a registered, trained practioner.

Do I know how it works, NO, but what I do know is it worked for me. 

I have never had sciatica before but have had a few bouts recently since PMR diagnosis! I was offered physiotherapy but declined it and it has eased. I have changed my vacuum cleaner to a rechargeable and it helps though not totally. I have also paid attention to how I tackle cleaning and no longer overreach in one direction as that certainly causes it to return. I now move nearer whatever I am doing as it is not worth the pain to lean too far to one side.

I have been taking pain killers for sciatica which do not really work. I have been offered paracetamol, co-codamol, naproxen and tramadol! I have been to a physio and she was quite good. I had a new sciatic flare and went back only to be asked by the receptionist what did I want, it then transpired she had cancelled my appointment by mistake. I went to a new physio who is absolutely brilliant and as a plus is also cheaper than the other one and is closer to my home. My GP reckons physio helps too.

Ptolomy, the hand of fate guided you to your new physiotherapist!  Mine is a total angel.  She has been treating me for things I didn't even know I had, or if I did that there was any hope.  And feeling much better for it.  I finally polished off the last of my sciatic pain by going to bed with a very hot hot water bottle under the complaining hip for a couple of weeks.  I still can't lie on my side or the pain comes back very quickly, but most of the time I'm not troubled by it when out walking or just doing ordinary everyday things.  Mind you, there's always something; now have a wonky shoulder, but I don't have to walk on my shoulder! 

Boy....you are blessed to have found brilliant physio.  I was

sent to pain management and the doc was an absolute

anal cavity.....they gave me meds way too strong.  I finally stopped

going to him and my Primary and I handle my pain right now.

I too have that wonky shoulder.....had x-ray and my doc

practically told me I had to go to PT or might wind up with

frozen shoulder and that's a much bigger problem than I

have right now....Golden years huh?

Thank you, ptolemy. I have not taken any painkillers and do not intend to and knowing that they may not work aids my decision. At the moment I am managing but if it becomes a problem I'll seek private physio. There's a good one locally. I hope your sciatica eases soon.

Thanks Silver49, it has definitely improved and is currently pretty mild, good old physio.

I am very blessed here in Italy - I'd always been somewhat sceptical about "pain management" for chronic pain but was delighted to discover that here they send their anaesthetists off for pain control education. They don't just hand out ever increasing quantities and levels of drugs - they seek  the cause and endeavour to do something about it.

In my case the PMR add-ons were primarily due to myofascial pain syndrome leading to trigger points, hard knots of muscle fibres identifiable in the middle of particular muscle groups. They in turn irritate any nearby nerves causing referred pain in appropriate places further away and spasmed muscles.  

Astrid identified them and then worked on them for a few months using steroid injections and needling as well as manual mobilisation techniques to "break up" those hard knots. I also had some physio although the PMR did make that quite problematical. Other than the injections I was never offered pain medications - the work was entirely on the cause rather than masking the pain. She is now a local GP - with a private specialist practice in pain management so I would have to pay where before it was covered by the healthcare system - but it would be worth every cent! It's probably about the same as a Bowen session. But once she got it sorted and I had the bite problem that was probably the real cause dealt with - no return!

Both myofascial pain syndrome (MPS) and piriformis syndrome are often found alongside PMR - I've written about it a lot. In both cases they can trap or irritate the sciatic nerve - in some people it passes through the middle of a muscle group and if those muscles are in spasm that is what happens. MPS is caused by the same cytokines that cause PMR - except they are concentrated as hard knots of muscle fibres whereas in PMR they are all through the body or systemic. These trigger points, as they are called, overlap with the ones they identify in fibromyalgia but are a bit different - pred works on them! They are found in pairs on either side of the spine in the shoulder muscles, about rib level and in the lower back, where the baby's dimples are. All of them can irritate nerves - and lead to shoulder.upper arm pain, rib pain and low back and leg pain, as far down as the knees and even ankles. Muscle problems - which don't show on x-rays - are the most common cause of sciatic pain but doctors are notoriously bad at identifying them. A local orthopaedic specialist here told me my back pain was due to wear and tear and I'd have to live with it - this was post a whiplash injury. The pain doctor and the physio at the hospital saw it straight away when they examined my back - expressed surprise at the doctor's opinion and solved the problem eventually.

Chiro may help a bit if you are lucky - but it is a soft tissue problem, chiro is aimed at bones. Bowen is soft tissue chiropractic in a way.

ptolemy mentions sacroiliacitis - mine was like that too, the spasmed muscles tightened the sacroiliac joint and it became inflamed. I couldn't move so they admitted me to hospital for treatment - unfortunately although it worked well they couldn't continue with the fast version, I reacted badly to the infusion of diazepam by developing severe atrial fibrillation and tachycardia! So it was down to the slow method in the pain clinic (see the other post) which took months but worked superbly. If I'm daft and overdo certain things the back muscles will have a small paddy and the low back pain returns briefly but the warning is enough!

I had a hard knot on the right side of my upper back that had

been there for years.  The pain mgt. doc gave me some shots around

it and it helped.  Also had cortisone shots in or on side of spine 4 times

a week apart.  The source of my pain is known.  I have two herniated

disc just between my shoulder blades.   I've known too many people

that did not have good results from spinal surgery so want to avoid

that at all costs.  At my age it would have to be an emergency

situation for me to even consider it.   My Primary and I are just

trying to keep me comfortable and mobile.  Then along comes

PMR to add to my problems.  However. doing okay from day to

day.

Thanks for all the good info.....

I remember having the most excruciating pain on the right side of my upper back for quite a while, one evening I went out and my PA's husband was going round asking what drinks people wanted, he put his hand across my back as I was sitting and he was standing behind me, I felt intense warmth across my back and have never had the pain again. He had nothing to do with complementary medicine, but obviously could work miracles.

Boy that is a puzzle huh?  If he could do that for everyone he'd

be modern Miracle Worker.