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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Intermittent claudication. Due to protein S deficiency possibly. Have DNA MRNA panel done. Extremely informative. New Amsterdam Genomics is imo the best. I suffer from similar symptoms. Low and behold I have a mutation which causes this. The excruciating leg (mainly calf pain) is what I feel. The arch pain in my feet was progressive and a later symptom for me as well. Its almost as if the blood slows and temporarily blocks within muscles and arteries. Its horrific and considered asymptomatic until suffering a clot. This is bs. The aches and pains are very real and dangerous. Please look into this. I really hope you are alive and well!
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