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Calf Pain for over 3 years with no diagnosis
I (32 F) am hyper mobile with a current BMI of 36 after losing 45 pounds in the past 9 months. I have been having pain in my left calf that no doctor I have seen in the last 3 years can figure out a cause for. The pain started around the beginning of 2022 with me first bringing it up to my primary care doctor in May 2022. When the pain first started it would only happen after I was sitting and would take my first step I would get a severe pain in the back of my calf during the part of my walk where my weight is all on that leg. The pain was absent when sitting and standing and only happen during walking and would last from 10 steps or longer but would eventually stop. It did not happen every time I sat but I did notice certain chairs made it happen more frequently. Eventually this has progressed to the pain starting while walking. I can be pain free for many steps then suddenly the pain is there and can last for minutes to hours being felt with every step but just standing was pain free. Then it would randomly start while I was standing and movement did not help. I even randomly get pain now while sitting or even while laying down. There is no obvious swelling. Left calf actually measures slightly smaller. It does hurt to push on my calf muscle on the left side.
Jan 2022 - pain started
May 2022 - Primary care had me try muscle relaxers before bed for weeks with no improvement. Eventually my right calf started doing the same thing.
November 2022- injured tailbone and knocked wind out of myself. breathing hurt for months and could not sit on tailbone due to pain.
Mar 2023 -Appointmemt with pain management. Ordered Ganglion Impar Block for tailbone and physical therapy for calf pain. Also started pregabalin but after slowly increasing dose for months no effect on pain so was tapered off.
April 2023 - First ganglion impar block. Stopped the tailbone pain for 6 months but also strangely stopped the calf pain but only for about 1 month.
May 2023- Went to physical therapy weekly for about 6 weeks. Was taught stretching, strengthening, massage. Had metal instrument scraped over back of leg to break up fascia and promote healing. Was also recomended to wear compression socks and use topical ibuprophen. No effect on pain.
Dec 2023- second ganglion impar block. same effect on tailbone and calf pain as the first one.
Dec 2023 - appointment with valscular to check for peripheral artery disease. Within 5 minutes was told not a vascular issue.
Dec 2023 - appointment with sports med. X-ray taken =normal. MRI of lower left leg Ordered. EMG and neuro consult ordered. Discussed exertional compartment syndrome but said does not fit well enough to test for.
Jan 2024 - MRI shows fluid signal on T2 weight images along the gastrocnemious.
Feb/Mar 2024 -EMG normal. Neurology orders MRI neurogram left upper and lower leg. Discussed possible focal myostosis. CK ordered =normal
Apr 2024- MRI shows similar fluid signal as previous MRI 4 months earlier. Refused to order muscle biopsy with a normal CK.
April 2024 - Checked to see if artery behind left knee is being closed off when knee is bent. Test is normal.
May 2024 - Sports med does not no what to do so refers to Mayo in Rochester but after speaking to them they do not accept my insurance and I can not afford to pay out of pocket for more testing there.
May 2024 - Last time the right calf has hurt like the left calf.
Aug 2024 - 3rd Ganglion impar block that fails to fully work for calf or tailbone.
Nov 2024 - discussed prolotherapy option for tailbone and brought up calf pain. Tried 4 sessions of Osteopathic manipulation of calf fascia that I was told Had many fascia herniations. No effect.
Nov 2024- started getting pain in left foot arch that typical starts after hours of being on feet ( not fitting plantar fasciitis) Does not seem to coincide with calf pain.
Dec 2024- 4th ganglion impar block.
Worked like the first and second block.
Mar 2025 - Talked to primary care about pain and what doctor to try to see/ any unexplored option. Does not know what to try. Orders MRI neurogram of left lower leg but still awaiting results. Orders MRI of lumbar spine to check for sciatica- Normal
Had a MRI of pelvis at some point that was also normal.
So here I am over 3 years later with no answers and pain ( that can get as bad as a kidney stone) everyday in my left calf. Anyone have a similar case? What type of doctor should I try to see? If there is still fluid in the newest MRI should I insist on a muscle biopsy to check for myostosis or compartment testing? Any other ideas? Even if the pain can not be treated I would really like an answer as to why this is happening.
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@blu93
If I were you, I would get an updated EMG/nerve conduction study by a new, highly rated neurology specialist, small fiber neuropathy skin punch biopsy and neuropathy bloodwork done by a neurologist, see a rheumatologist for hypermobility testing (Ehlers Danlos syndrome), and see a vein/vascular specialist for a ankle brachial index test/evaluation.
I also have left calf pain and had a recent EMG done that shows nerve damage that did not show up on 2-3 previous EMGs done by different specialists (I have had different results each time). I also have confirmed small fiber neuropathy.
Did your read the details in all of your MRI reports? I have found things that were never reviewed with me by the ordering doctors.
@blu93
I also have hypermobility and told by an EMG specialist that I should be assessed for hypermobile ehlers danlos syndrome by a rheumatologist.
Have you had an ultrasound of your ankle/calf/knee/thigh?
Have you ever had cortisone shots in your calf? Have you tried nerve pain patches like Salonpas lidocaine patches or nerve pain creams like capsaicin? Have you tried icing or using heat on your calf? Have you soaked in a warm epsom salt bath?
I did actually have 4 skin biopsy's taken from my right arm and right to test for small fiber neuropathy last june that came back negative. Yes I have tried heat and ice at different times with no relief. When i asked about getting tested for elhers danlos I was told there was no reason as the treatment is the same as hypermobility so they would not refer me.
I found my MRI results.
First one said "Muscle bulk is maintained. Slight increased T2 signal intensity within the lateral gastrocnemius muscle. Fluid signal intensity is seen tracking down the myofascial border of the medial gastrocnemius"
Second "Unchanged mild edema-like signal within the lateral gastrocnemius, nonspecific. Unchanged fluid tracking along the myofascial border of the medial gastrocnemius muscle"
Still waiting on results of the latest MRI.
Testing for small fiber was done in june and was negative. Doctor didn't think sending me for testing of elhers danlos was worth it as treatment was the same as hypermobility.
I found my MRI results.
First one said "Muscle bulk is maintained. Slight increased T2 signal intensity within the lateral gastrocnemius muscle. Fluid signal intensity is seen tracking down the myofascial border of the medial gastrocnemius"
Second "Unchanged mild edema-like signal within the lateral gastrocnemius, nonspecific. Unchanged fluid tracking along the myofascial border of the medial gastrocnemius muscle"
Still waiting on results of the latest MRI.
Doctor didn't think sending for elhers danlos was worth it as treatments the same as hypermobility. The only ultrasound was when they checked if the blood flow behind my knee was getting cut off when i bent my knee = negative. Yes I have tried ice and heat many different times to no effect.
I have similar case. I have had a cramp in my right calf since 2021, with no diagnosis. When I become inactive my calf slowly cramps up and walking slowly releases the calf. While doing physical therapy my physical therapist noticed my calf was shrinking. I have seen 20+ medical personnel since 2021. I'm currently work with neurologist at the Mayo Clinic in Rochester. This month alone I have had EMG, blood test, brain and full spine MRIs, all past and current tests have the same results nothing to account for my symptoms. The neurologist told me I get to join the special patient club of undiagnosable. He has me on carbidopa levodopa aka Parkinson's medication because I'm to young to be on muscle relaxer.
@blu93
See the following based upon searching terms in your mri results:
1.
https://radiopaedia.org/articles/tennis-leg?lang=us
2. https://pmc.ncbi.nlm.nih.gov/articles/PMC6473016/
3. https://radsource.us/tennis-leg-plantaris-tendon-rupture/
4. https://pmc.ncbi.nlm.nih.gov/articles/PMC6473016/
5. https://radsource.us/not-plantaris-keys-better-diagnosis-calf-strain-injuries/
6. https://link.springer.com/article/10.1007/s10140-019-01680-5
7. https://pubs.rsna.org/radiology/doi/10.1148/radiol.2017160267
Hi.
If your dates are correct I'm blaming the tailbone.
Chiropractors are the best at assessing and adjusting the coccyx. Because you are hypermobile you would need a low thrust adjustment.
calf pain started 11 months before I hurt my tailbone
Thankyou for the resources. There was no trauma before the pain started happening and definitely no sensation of a pop in my leg. If my tendon or muscle had ruptured wouldn't the pain be constant and not come and go so randomly? No evidence of a bakers cyst has been found.