Myofascial pain syndrome? & persistent knot in calf

I just posted this also on the Patient.co.uk/forum, but thought I would post it here too, so here goes: One of my first PMR symptoms was what I thought was a horrible cramp in my left calf, but it never went away, and was extremely painful when walking. I had recently undergone a spinal fusion, & had gone to bed one night feeling fine, and woke up with this. Every test known to man was done to this, thinking it was coming from my back (ultrasound, EMG, MRI's), and nothing was found. My PT worked on me for months & discovered a hard knot in my calf that was not responsive to any manipulation or exercises. He had consulted with another PT & thought it may be a myofascial problem. Then after 6 mos, it just kind of went away about the time I developed a searing bilateral groin pain. This was all last summer & my calf hasn't really bothered much since then, but I do get some discomfort, usually when I have a day that my arm muscles flare a little. Just within the last month, the calf pain has increased again & the knot is back and very painful. I've been trying Bowen therapy (I've had 4 treatments so far a week apart) and the rest of me has benefited from it, but not this spot. The massage thereapist tried to work on it yesterday, but it was so painful that I finally had to have him quit & it's even more sore today. Has anyone else had a spot like this and did you find anything that worked on it? I'm not even sure which of my doctors to ask about this.

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  • Last year I got a hard lump in my upper thigh which caused me to limp. I went to the osteopath and things improved a bit, the pain came and went. The osteopath recently suggested I see a vascular surgeon and it turned out that I had phlebitis, it was a vein that had turned varicose even though it did not show as such.

  • May I ask you what investigations /treatment did you receive for the phlebitis?

  • I went to see the vascular surgeon and he used ultrasound to look at my leg and you could see "black holes" where the problem is. It was quite interesting, as I was able to see it too. He is going to destroy the vein under local anaesthetic. He said it would take about twenty minutes.

  • Hi Piglette- You probably already know this since you've been playing the PMR game awhile, but, if you're still taking Pred, suggest you up dose before and shortly after the procedure. Not sure what procedure your doc will do to destroy that lump, but I had bilateral saphenous venous ablations a few years ago and that can cause quite a lot of local inflammation, which may trigger a flare for you. A saline injection can also cause local inflammation.

    Interestingly (to me only, probably) I still get redness along the line of the ablated veins when I'm having a bad PMR flare or after a hot shower.... Weird. All the vascular aggravations are so tied to PMR, as we know...

  • Hi Zoesquare1

    Most interested reading your post and outcome for you at the time.

    I had bilateral endovenous laser ablation 11 days ago and was extremely nervous as to how my body would

    cope from side effects of the various injections plus procedure in general.

    My PMR is fairly much stabilized after almost 4 months of Hydrocortisone, dosage equivalent to 10mg Pred daily.

    I am most pleased to report my fears were unfounded and have done everything thus far my Specialist advised me to do exercise wise.

    I gently massage my legs (excluding incision sites) with aloe vera gel with vitamin E, pure magnesium oil and colloidal silver cream containing manuka honey, avocado oil, silica, jojoba oil + .

    This is done morning and night.

    My bruising is slowly subsiding, upper legs still knotty and sore to touch but great improvement daily.

    I no longer awake in the night with leg cramp that almost wants to make me vomit and faint at the same time.

    I did not alter my dose of meds.

    I am truly grateful that this exercise went well and my fears were unfounded.

  • Megams, I am glad things went well, did you find the PMR pain changed at all? How long did you wear a stocking for?

  • Hi there Piglette - great to hear from you again.

    No changes at all to PMR, other than some fatigue first 3 to 4 days as one would expect.

    l must confess whilst I was terribly nervous leading up to the day (due to me possibly having a reaction to the various chemicals injected, which was a possibility) - the Vein Specialist prx'd 2mg Lorazapam which I took one hour prior to procedure - really was helpful in every way. This is standard for all her patients I believe.

    I appreciated having this meds as she did have trouble with a vein in L leg which was small and needed several attempts at new entry points.

    It is 2 weeks tomorrow since wearing these becoming lovely thick stockings but absolutely imperative wearing as you want to minimise the possibility of a DVT and support ablated veins +.

    The incision areas have healed beautifully, I took & still take extra lypo-spheric Vit C as extra in healing throughout my day.

    I'm thrilled thus far how well I did, you can too, I am sure.

    Also 45 minute walks daily weather dependant (early winter here now) so use my excercycle 10 minute stints.

    Good luck and let me know how you go.

    Blessings.

  • No mention of Lorazapam in my case, perhaps women doctors are more aware of people being nervous, my surgeon is male. I am only having one leg done, in the upper thigh. Do you wear the stockings all the time? Do you know for how long? The surgeon said that there is a honeymoon period at the beginning when everything is fine and then pain starts after a few days, did this happen with you? Did you take any pain killers?

  • Hi there Piglette

    The Vein Specialist explained that she would not recommend carrying out this endovenous laser ablation (ELVA) without Lorazapam as the many injections along main vein line (lost count after 30 + as I can't have adrenaline) was like a continuous bee stings.

    This is why she recommends a light sedative. I watched her doing her job as I enjoy anything medical.

    Pleased for you its only necessary to have just one leg done, so you may be fine - don't be afraid to ask for a smaller dose of 1mg Lorazapam if you feel you might want a bit of help - any comfort for us folk is worth asking for.

    Yes, had to wear stockings night and day. for 2 week period up tomorrow.

    Legs still tender and bruised but no where as bad as they were.

    Be careful not to knock the area either - you will know about it if you do.

    Yes, day two onwards was extremely sore, swollen and painful (mainly bruising and the lumpy veins that had been ablated.

    I managed with one Paracetamol - have a reasonable pain tolerance I must admit. It does settle down as the days go on of course.

    Good luck.

  • Thanks so much Megams. My osteopath had the same thing and said the anaesthetic was very painful, so did the vascular surgeon!

    I have never taken Paracetamol in my life, so I suppose there is a first time. I have had a letter today saying he is going to use schlerotherapy too.

  • Yes the schlerotherotherapy is another chemical used to shrink vessels.

    I still have more of this to be done and in one months time once the main areas had settled and I am back from o/seas I will attempt a little more.

    Panadol might help or something stronger which I haven't used.

    Regards once more.

  • Thanks Megams, it is so nice to hear other people who have been through the same thing. I got the impression the vascular surgeon is doing the foam sclerotherapy at the same time as the VNUS closure, which uses RF to zap the veins. I assume he may do some more later if there are extraneous veins.

  • That's good Piglette.

    I believe the foam sclerotherapy is what is mainly used these days, but was not recommended for me having a previous heart defect, partly corrected.

    She did inject diluted small amounts of liquid sclerolant (not sure if spelt correctly) for the superficial veins which she will do more of after I return from a short stint overseas.

    What is RF to zap the veins?

    I think for us this may be a on going situation.

  • RF is radio frequency, it is used instead of laser and is supposed to have less bruising. Apparently foam sclerothapy is used for the wiggly veins as the VNUS bit can only be done on the straight veins as the probe they push up the vein cannot go round corners. I had the op yesterday afternoon and all your information was really helpful. The bee stings were rather drowsy bees and were not that painful. Dozens of injections though for the anaesthetic and the wiggly veins. It took about twenty minutes in a proper operating theatre. Yesterday evening I got the PMR fatigue, wow did I. Apparently I can take the elastic bandages off in three days and can swim after that. The vascular surgeon said the steroids will help the pain when it comes in a day or so, which is one plus of taking pred. Also because of the steroids I will get more bruising and it will all take longer to heal.

  • Glad its all over for you and take it easy.

    Three days only with elastic bandages and can swim, wow that's great news Piglette.

    Take good care in the days ahead.

  • Thanks Megams, it does seem fast. I thought it would be a couple of weeks. I may give it a few more days before I swim. My thigh looks like I have been attacked by a swarm of bees. The bruising is not too bad though, but I have had some bleeding.

  • Hmmmmm. keep a close eye on that and so pleased bruising not too bad although do give that time as it still may be manifesting.

  • With the pred I bruise really easily. When I go to the osteopath I come out with fingerprints all over me, so I was surprised. I thought I would have beautiful coloured bruising, but just got a pale grey look which is fading.

  • That's great news as I am sure the bruising just adds a little extra discomfort.

    Sounds like you have done well.

    Good on you Piglette, continue to go well and gently.

  • That is interesting Zoe, both the vascular surgeon and my GP said it was not necessary to increase my pred dose. I must admit I was a bit sceptical. I am having the VNUS closure which is the RF technique like yours. I will check on the results to see if I have any red lines on the ablated veins, I am sure it will be of interest to me!

  • Hi Piglette & Megams, I didn't have PMR

  • Oops! Hi Piglette and Meghams,

    As I started to type below 😜, I didn't have PMR diagnosis or pred treatment when I had my ablations and I had a hard time w/ the recovery (fatigue and phlebitis). Perhaps the untreated PMR aggravated things.... Dunno. Meghan's I'm so happy you had no difficulty! I think we all respond different to things and good attitude (and a pred boost when needed) can help.

    Piglett, my brain leans toward research, so I'm always "curious" about my experience and that of others. Think there is SO much to learn about auto-immunity. SOmuch overlap and individuality. Some day we will all be genetically mapped and treatments will be individualized. We are starting to see a lot of that in oncology now, which is very encouraging to me. Hugs and happy weekends all!

  • I will let you know how well it goes. I was told by the vascular surgeon that there is a honeymoon period for a few days after the op and then the pain starts!

  • Wishing you the very best result, P. Will be curious re your results.

  • I had an ultrasound of my calf last year when this happened as my doc suspected a DVT since I had recently had surgery, and it came out clear. This really feels like it's in the muscle.

  • Have you ever had torn muscle fibres? Google torn calf muscle. I wonder if you have that (I've done it just trying to step fast off the side of the road to cross to the other side) when you have PMR that the repair of the damage goes wrong and forms an area of fibrosed tissue?

  • No, I haven't ever had a tear. When we ruled out the blood clot last year, I started going to PT, and even my PT was baffled as to what was going on--didn't react to any of the normal treatments for a muscle injury. I hadn't been doing anything prior to the pain starting and it came on overnight, then went away spontaneously after 6 mos., then came back again now out of the blue (9 mos. later), and in the same spot. He was thinking back then it was something related to a myofascial problem. The knot feels deep in my muscle & is extremely tender to try and manipulate & feels worse afterward. After reading here how often myofascial pain syndrome can go alongside PMR, I'm really suspecting that it's a particularly ornery tight knot. I've read that an injection can be given in those resistant knots, and was wondering if anyone here has had that done.

  • Interesting. The injections I've spoken about are generally used in the shoulder, waist level and hip level trigger points which are recognised - I've had that done as well as the manual mobilisation. The cortisone shots are only part of it though - you still seem to have to disperse the hard bit afterwards though I suppose maybe then it doesn't have the concentration of cytokines there that is the underlying cause and which might cause it to reform. The cytokines bit is proven - although it isn't mentioned in the Wiki entry, it says the cause isn't known - I know the orthopaedic specialist who did the work and have heard his lecture about it. I have no idea if it is published though.

    Have you read the Wiki entry about MPS? I'd not done so until now (wiki can be good or terrible so I am very selective) and there is an image of the points for injections - a mygenesissimage - which appears to show some in the calf muscle.

    Has the discomfort from the massage faded at all? I know from experience that in PMR the post-massage discomfort in muscles that have been worked on hard does tend to be worse than it would be normally and lasts longer.

    If you find someone who will try a cortisone shot do give us some feed back. Needling works in back muscles - wonder if it would work in calf muscle.

  • I have an appt scheduled with my orthopedic surgeon (follow-up on my spinal fusion that was done last year), this coming Thursday and I'm going to pick his brain on this. He was the one who was trying to help me last year when we thought this was coming from my back, so he at least has some background in what we tested for before and he's a pretty bright guy who may be able to come up with some ideas.

  • I hope he will be nice and broadminded and try things - the (Italian) orthopod I saw here told me the low back pain was due to degeneration and nothing could be done. Hardly encouraging since I could stand for about 5 mins at the age of 59! Physio and pain doc had a fit - hadn't he heard of muscles? ;-)

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